When do you know if citalopram just isn't working?

Hi katecogs,

  I just read your reply and would like to as about side effects. I am on week 16 now. At 8 1/2 weeks my side effects seemed to be going away. Then a couple of weeks ago I started having side effects again. Is this what they call a blip and how long before it will go away again. Only side effects I'm having is waking up shaky and sleeping less, although sleep is better than it was. Is it normal and can it take up to 6 months to completely stop as I've seen on some of the posts?

Thank you for your help.

Sue

Hi Sue

Yes it can take 6 months - for some people it's quicker and others, longer.  Everyone is different and the meds will work in their own sweet time :-(

Yes that could be a blip you're having.  You start feeling better, only to have it snatched away and all the symptoms come back.  It'll happen time and time again, and each time the good feeling will get longer and stronger.  There seems no time limit on blips - they'll last as long as they want to.  For me I found that when back in a blip, it was best to try and relax towards it, just let it be there, don't tense up against it, go with the flow, go about your day in a relaxed manner, walk slower, drive slower, don't keep checking if 'its' still there ........ I know, very hard to not to rush about.  Relaxing towards it helps release tension.  Also try and accept its a blip, remind yourself it will go and that you're healing.

Along the road to recovery, little things will upset our rhythm and make the blips return .......... being over tired, a change of scene sometimes (holiday, job), stress, rushing about too much ........ 

Your nerves are over sensitive and your body over reacting.  The meds help calm the nerves back down and in turn return our reactions back to normal again.  Little things can make you have that pang of anxiety flick on and off all day long, and especially in the morning when first waking.  It's a long bumpy road, and it takes everyone different times to recover.

My son had a melt down nearly 2 years ago and he was very ill - was off work for 3 months.  He was put onto Fluoxetine and had a dreadful journey time on it.  It took around 9 months for him to recover and he's now back to his normal happy self again.

When I recovered, the last symptom to go was the dreaded morning anxiety upon waking.  Hit me every morning as soon as I opened my eyes.  But I did find that it wasn't always an indication for how the rest of the day would pan out.  By the afternoon I'd start feeling well and it lasted the rest of the day .... until the next morning again.  Eventually I began waking anxiety free.

Took around 3-4 months for me to start feeling patches of good things beginning to happen, and by 6 months I was feeling really good (still had the occasional blip though).  I recovered more and more after 6 months too.

Hope that helps :-)

K xx

Thanks so much for taking the time to respond Kate! Everything you wrote is very reassuring. I think I am starting to feel those good patches you are talking about, as I am just tipping over into a little over 3 months. 

I have added CBT and counselling into the mix and have found that EXTREMELY helpful. 

Framing the bad days as blips is really helpful cognitive restructuring too - from now on, I am going to lean into the bad days and be gentle with myself and maximize the good days, afternoons, whatever.

Thanks again!

Hey that's great - those little patches of wellness come and go, so enjoy them whilst they're there and work on the relaxed attitude when they've gone - you learn more in those low times.  They'll eventually be a thing of the past.

K xx

Thank you fofor the positive words about your citalopram experience, it's given me hope .  

Glad my words helps Lorraine ..... give the meds a lot of time.  

K xx

So glad I read this.  There is still hope for me.  I have been on celexa 20 mg for 8 weeks. I have felt no change.  I'm not really sure if I have had the side effects. Just still the stressful anxiety.  No energy at all. No motivation.  It is definitely worse in the morning.

Hi Twinnotes

Yes 8 weeks (2 months) can be fairly days for some.  Think I started noticing small changes around 3-4 months.  I've taken these meds twice and the second time I had no energy or motivation at all for months - I felt nothing inside, no joy, contentment etc.  It wore off over time.

Mine was worse in the mornings too (both times on the meds) and as my day wore on it seemed to lift.  It does get better, so just keep on doing what you're doing and give it many months.  Everyone's different so it takes different times for us all.

I was on 20mg too.  Just stick with it, head down  xx

Hi John

I am past 3 months now and think I am starting to have better afternoons and evenings.

I have been on 30mg for 5 weeks and am telling myself that dose adjustements take 6-8 weeks to really evaluate.

Hang in there!

Try and get some counselling or do some reading and therapy at home with some books. I have started both those and am finding it really helps to open my eyes and makes me understand myself and my symptoms more. 

 

Hi there S-Mere. I've had 2 pretty good days in a row. Been awhile since I have had those. I have been trying to keep busy and now that the snow is gone I ride my bike for an hour. Guess it all helps. Even though I've been feeling a bit better it seems that I'm looking out for the Big Bad Boogieman to come around the corner!!!!!! Lol. Hope he runs away from me. I pay attention to Kate's comments and hopefully we will all feel really good soon!!!!!!

Hi Lorraine, I've been going through that same exact stuff with my son.  If it wasn't for Kate and Lois, both ladies in this website forum, not within this conversation though.  I really wish we could find out from Sweetmere and John how they are doing and how long it took them.  Everyone is different, but it's nice to read someone's positive experience.  It helps me feel like I'm not alone.  

Hi . Thanks for the post, I'm definitely getting better but it's slow. I guess I want a quick fix. One week of 30 mg I can manage every day tasks but get anxious if I take on too much, tinnitus is worse if I push myself too. I hope your son is doing better. All the very best 

Hi Lorraine 

Did your side effects get worse going to the 30? And did it make you more tired? I am worried about upping to 30 like I am supposed to. I started on 10 mg 4 weeks ago and then went to 20 after 2 weeks and now supposed to go to 30 but I am scared since I haven't been on it long. 

Hi.i just increased to 30 a week ago, obviously aware of increase but have to give it time, i think in a month I hope to feel the benefit if not back to the drawing board. 

Good luck . 👌

It took me 8months to feel better...it's not a change your dose I will feel better process..takes lots of time as in months....trust me...take care

Thank you. This is such a good forum . Gives me hope that I will get me back. I'm still struggling with anxiety. So exausting.

My son had 2 halfway decent days.  Don't know what to think or even if I should think.  I keep hoping that we're turning that corner of this nightmare we've been in.  His anxiety has gotten so bad that he couldn't swallow.  He had no saliva in his mouth anymore..  he lost so much weight from not eating for days and weeks.  Down to 113 lbs..  19 years old.  Pretty sad.  He's been eating these last 2 days and it is such a beautiful sight.  Do you think it'll go backwards and be that bad again?  Oh God I hope not.  

Hello JoJo.thats great his eating again..I had lost 20pounds in the beginning...plus I also had very dry mouth prior to celexa..the celexa did make those anxiety symptoms worst ....but then they subsided and went away..thank goodness...for me they never came back.. knock on wood...take care

Is it good odds that he won't be living in that hell again?  

?So my son is going through the exact thing you did.  How did you get through that?  How long did the "hell" days go on for?  These 2 days weren't great..  don't get me wrong.  But he's like 50/50 right now instead of anxiety threw the roof.  Will it go backwards again.  I know that's a tough question, but did it happen to you??

Yes it comes in waves ...but the waves get lessor and lessor... sometimes if felt like such a relief from the symptoms/side effects when they came ... because Everytime they came it was less...but then I would think they where the same...but in reality they where less...I know confusing right...but that's how this med worked for me....I had a little blip last weekend...but now gone...it's like it wants to come thru ..but celexa slows it and or stops it..it's crazy...but better than I was for over 20years... believe me...

Hi jojo

Glad to hear he had relief for 2-ish days.  Yes it does come in waves, but as Lois says it gets easier and the blips get less severe.  Don't expect to be out of the woods yet (sorry) but remember the general trend is up.  He's doing well.

My son also lost so much weight when he was ill too - his cheekbones stuck out, eyes were sunken and he looked dreadful because his appetite was poor.  I gave him small amounts only, also soup and any liquids, oh and he started drinking tea back then too.  It is worrying for a mum to watch her child - I felt pretty helpless at times, but we got through. 

I got my son interested in music and today he plays in an African drum group and plays guitar too.  I know your son doesn't like to venture outside much, but if there's something he'd like to do / has an interest in, then its worth pursuing.

Yes when they do something (like eating after not or a while) its truly a beautiful sight.  I remember when I heard my son whistling upstairs for the first time in months, it made me cry.  That was a sound of being happy and I knew we'd then turned a corner.

The first Christmas when he was well he gave us a beautiful card with such a lovely message inside about us being there for him and how much he loves us, and the thanks for helping through him through that difficult time.  It sits on my bedside cabinet still ........ 

Your son is on the mend - he's still going through recovery and seems he's on the right track.

Remember to take time out for yourself too xx

 

Thank you as always Kate for the re-enforcement.  I really appreciate it.  How old is your son?  Does it matter what caused the anxiety in a person with this med? 

Watching any person, especially your child starve that they turn into skin and bones is a nightmare.  I know it takes time, I get it now..  I only hope that the "hell" days are behind us.  It's definitely less severe now.  Not by a lot, but enough that he isn't attacking me or anybody else that went near him.  So proud of you son for staying on this med while he was living in hell himself.  Not many people have the courage to do that.  I talk about you and Lois to my family all the time.  I tell them everything you ladies post.  If it wasn't for the 2 of you letting everyone know what you've experienced and being open about this, I guarantee everyone here including myself would have given up on this med and tried something else and odds are, never would seen or felt the relief. 

I thank you from the bottom of my heart.. 

Hi jojo

My son is 23 now and was just 20 when he became ill (though was probably building up when he was 19).  No, it doesn't matter causes your anxiety - we all end up in the same place and all go through a similar journey back to health again.  My son (unbeknown to me) had social anxieties for ages ...... I just knew he was quiet at family parties, had a couple of friends (not loads) and typically loved being indoors playing Xbox.  He met his first girlfriend and he started going out a little, holidays, festivals and she was due to go to University - this he found hard to deal with as they'd be separated plus she was probably a little too wild for him.  He'd found love, a bit of freedom and courage mixing with people, and it was all about to end.  I noticed he looked slimmer and was more edgy, snappy but did not see what was coming.  Apparently his insecurities increased, anxiety increased until suddenly his world crashed when he had a massive melt down and he didn't know what had hit him.

Everyone has a different story about how their anxiety came about - often it builds up over years (like mine) and others it can be overnight, maybe shock or something.  Mine started from a bad relationship which built up over some years which resulted in me having a melt down too.  Many people develop it from pushing themselves at work, life etc etc .... burning the candle at both ends, meeting demands etc etc.  You never, ever see it coming because you don't know what it feels like until its too late and its hit you full in the face.  Sadly its becoming a very common thing because of demands of our modern lives.  Stress .......... most stories have led to stress, and we all cope with stress differently, some thriving on it whilst others go to pieces.  There is always a cut off point though as the body can only take so much stress - and when that level has been reached it'll boil over with a huge outpouring of adrenaline which can be frightening.  Its at this point that it can change ......... that frightening feeling can stick with you, and you then dread another episode like it.  When it does, it frightens you again and you begin to avoid the situation / place or whatever / wherever you are at the time, and start to constantly feel anxious about having another feeling like it (anticipatory anxiety) ....... you can then become anxious about feeling anxious all the time ..... and so the anxiety cycle starts, followed by other side effects which the sufferer begins to worry and feel anxious about.  So you end up feeding your own anxiety.

The meds increase anxiety to start with which is of course the very thing you're afraid of, so it can feel very uncomfortable at the beginning.  The meds work by slowly hanging onto your Serotonin (a neurotransmitter in the brain) as it passes from one nerve ending to the next before being reabsorbed into the brain.  Serotonin makes you feel good, so an abundance of it makes you feel happier and happier which also makes you feel calmer and soothes the anxiety.  With the anxiety calming down you begin to not fear it (because it isn't there) and so you stop being anxious about being anxious.

Waiting for the meds to work is hard - and they need time to work, just as a broken leg needs time to heal.  As you wait you'll get fluctuations of feeling well mixed with feelings of anxiety ..... this is just the body adjusting.  You just have to ride it through those low times.  

Recovery really is slow ....... you don't just start feeling happy, but instead little things often ease one at a time.  You might not feel quite so low, might not feel so heady, or sick, might notice you're not constantly thinking of it all day, or maybe you feel slightly calmer.  All this creeps up slowly.  Recovery for me was little glimpses of 'normality' here and there, then an hour, then my evenings which slowly crept into more of my day ...... but I'd still wake full of dreadful anxiety every morning.  Over the months I began to look forward to my evenings and started to not fear the anxiety as much.  One day I woke up and the anxiety had gone.  This all took 6 months from the day I took my first tablet.  For many, it happens quicker .... some a little longer ..... but it isn't bad all the way through this timescale.

Oooh ..... just realised I've written a huge 'saga' type post.  

Anyway, hope that helps with a little bit of understanding it more.

K xx

 

Bravoooo.kate ...you explain it to the t.....take care....xoxo

Wow Miss Kate. Totally awesome post!!!!!

Kate this post is incredible!!!!   I am printing this and I want his doctor to read this so he can learn how this med works as well. 

Thank you so much.  You truly gave me the most hope.  My son started his first pill 5 months ago.  I wish with all of my heart that it's not going to take a lot longer.  Five months into it and he is like 50/50. 

I'm a big believer in knowledge about anxiety helps with recovery, plus helps family understand what's happening.

My son actually took 9 months to recover - a bit longer than some.  I got to the point of wondering if he was on the wrong meds and then things started happening for him.  He's been well ever since and came off meds just over a year ago.

It certainly sound like your son is showing good signs ..... just as my son started to.

K x

 

Why did he go off the meds? 

He recovered and didn't want to stay on them anymore.  Fingers crossed he's still doing well - is a very happy young man now 

 

That's lovely Kate...maybe one day ..I will not need them...but at my age more than likely...lol..have no choice but to smile .. because recovery it's a constantant battle...you are the best..take care

OMG Kate that is amazing!  Good for him... 

That brings up a good question that I guess only you and Lois can answer.  Ok you are on these meds for months and years.  If you take it every day, how do you know if you're recovered and can do without them?  Do people naturally do this?  Wean themselves off to see if they still need them?

 

I stayed on meds for 16 years and had reduced for a maintenance dose.  I wasn't in a hurry to come off and my doctor said I could stay on them for life if needed to ..... and that was my plan.  Curiosity got the better of me though 

I wanted to try without them, so I looked for a natural alternative and found 5-HTP and l-tyrosine and began reducing.  It took many months and I had withdrawal, but I finally stopped and went onto the natural meds (bought at a chemist).  I was well for a year until my son became ill, and it was too big an impact on me so decided to restart meds again before I became ill.  I needed to be well for him and didn't need to be mess.

When he was well I reduced again - this time much slower which took me a year - I tested the waters little by little, tiny amounts, and at any time I thought I felt anything returning I'd stay or could go back up.  I finally stopped and went back onto 5-HTP.  After a year I stopped the 5-HTP about a month ago as began having constant indigestion and am not taking anything now.

I believe the knowledge of anxiety, understanding what it is, how to treat myself with acceptance, relaxation etc (from the website and book) has helped me stay healthy.

You just know when you've recovered - you're back to normal, anxiety free and just feel skippedy-doo!! 

I weaned myself off without any help from my doctor - I'd been on them for so long, my original doctor had left and think I maybe understood them more and how they worked with my body.  I'd not recommend anyone to do it without their doctor though - or at least work with them if you have a plan.

K

You can stay on meds for life if you need them (my doctor told me that).  People take meds for all sorts of ailments (epilepsy, diabetes) and why should these be any different.  Don't be in too big a hurry though - wait until you have been well for a long time before considering it.

I can't tell you how ill I was once - the darkest days of my life, years and years, always searching to be well, be normal like everyone else was ....... I never thought I'd ever be myself again, I didn't know how I'd ever be anxiety free ..... but reading so much about anxiety and then being switched to the SSRI medication I couldn't believe it when I began to feel normal again.  Also I never thought I'd ever be able to be meds free either ..... but again understanding anxiety has helped take away the fear of it.

You can overcome anxiety - you will.  It will happen.

K x

Kate, today was my son's first day back at school.  The morning before bus was fine, the bus back and forth was fine, I really don't know how his day went but if anything had happened they call me and I didn't get a call so I am guessing his day was fine.  Anxiety all over his face...  a wreck but containing himself.  His behaviorist came to the house after school like he's been doing and he flipped out on this guy.  We didn't see this coming because I really thought the through the roof violent anxiety was behind us.  Now I'm terrified all over again.  Five months into this med, I can't believe it's still this bad. 

 

First day nerves and I expect its come out a bit worse for him as anxiety at the moment - I imagine today has all been a bit much for him.  Its a change of scene, school (who likes school anyway eh) and someone visiting him afterwards - anyone would find it stressful I'm sure, and because he has anxiety its just tipped over the top a little.

Recovery on the meds can be like this - 3 steps forward and 2 steps back.  Take a big breath, and remember he's come a long way already and he does have a little way to go too.  This is just one of those steps backwards.  Its easy for me to say don't be terrified, but I know that feeling when your son is having a bad time.

Is your son able to understand about anxiety too as in the weblink and book I mentioned?  My son wasn't interested in reading anything but I used to sit and talk to him all about it.

Was the behaviorist able to help and suggest anything?

??

Thanks Kate .u know the consequences of coming of to early ...but trust and believe if I need long term medication so be it.. anxiety it's a scary situation...you are a fantastic human being for taken time to give us all the therapy that doctor's don't have a clue about..xoxoxo

You know JoJo that is something I don't want to risk...I rather be stable than to play Russian roulette...with my anxiety ....I know I suffered for years without meds...and for me is better with meds ..than to take a chance and have those horrible adrenaline feelings I experience for years...take care

Yes I have seen a few who come off too early and regretted it.  I've read its best stay on them for at least a year from when you feel recovered.  And definitely - if long term medication is needed then there's nothing wrong with that.  Medication is there to help like any other meds.  Anxiety is truly a terrifying situation - nobody ever knows until they've suffered with it.

Glad I've been of help xx

Kate, you aren't surprised about today? I sorry, i am just so scared, frustrated, disappointed. By chance, are you and Lois on FaceBook?  

Five months and a set back this severe? You ladies are my rock that I need to lean on.  Kate, I don't know how you did it with your son, having this yourself.  

No JoJo I don't have social media..it gives me anxiety...... sorry

Oh ok.  I asked because it's so much easier going on FB vs. having to check my email then sign into the forum.  I understand...

Hi jojo

Well yes and no at being surprised about his setback.  I'm never surprised by what this condition offers.  You can think you're turning a corner when suddenly a huge setback can happen - but, remember the general trend is up.  If you plotted it on a chart (like the ones you'd see on a graph) the line would move up gradually with drops, then move up again with another drop, move up and maybe a bigger drop ..... but all the time it'll be moving upwards.

I don't know how I did it with myself let alone my son at times.  When my son was ill I sobbed many a time in secret so he couldn't see ..... one day I'd think he was getting there and the next he was in a state again.  It takes everyone different amounts of time to heal, so maybe as your son is on a lower dose which suits him perfectly it'll take a little longer?

Every day we'd go out for a walk or cycle ride - he never looked where he was going, just stared at the floor.  I took him to music classes and again he just went through the motions, I sat and talked for hours with him ....... and we got there.

I'd do it all again though if ever I needed to.

 

Kate...  it's the worst day ever!!!  Seriously bad.  Is this normal to go backwards beyond before???? 

Hello...JoJo yes it's a blip...try to occupy his mind ...with tender loving care....

Lois...  blip?  He broke his CD player after repeatedly throwing it.  The 10th one in the last month.  Then he broke Our tv, 4th one in the last couple of months.  He attacked me, lost his balance, landed on the metal dog crate and now has a gash on his head.  This is seriously one of the worst days!  Like in the topic of his forum, how and when do u know if this med is working?  

Oh jojo - I am sorry for you.  Is he seeing his doctor regularly too regarding his medication?  You should get in touch with them for his safety, and yours xx.  Your poor lad - must be so hard for him.  Did anything trigger today's outburst or was it the anxiety just got too much?

The signs of the meds working are the calm, normal times.  If you're not having them at all that's when to consider the meds.  How many of those times do you reckon he's had?  Do you know why he started having anxiety in the first place or has he always had anxiety which is worsening?

Do you have family with you too?

K x

Kate, this anxiety was caused by trauma.  It started over a year ago.  He has days that are 50/50 and some that are like 100/0.  I don't understand why it has to get to the worst.  

Right how his anxiety is so bad he looks like he's gasping for air.  He's 5 months into this med.  

Sounds like he's having a panic attack, not just anxiety.  Does he know about relaxing into it (I know you said he has autism bless him) xx.  Is he having therapy for the trauma too?

When I had anxiety I know there times when I just couldn't stand it any longer and didn't know what to do with myself.  I imagine he reaches that point at times?

How is he at the moment?

 

Kate, could you message me on here somehow your regular email address?  This forum isn't as easy to communicate on.  

He started calming down at 2:45pm.  This became very serious today.  He took it to a whole diff level.  And I agree, like a major panic attack that took HOURS to go away.  He's back to 80/20 😞

Do you realize how important you and Lois are to this joy ride???   I wish so bad that we can speak to each other.   So the bottom line, if this med wasn't working for him what would happen? Would he be seriously bad all the time?  

JoJo is working ...that's why his going up and down with emotions/anxiety...I was like that for eight months ...I didn't act in rage ..but I thought I was going insane...the crying the panics...the ups and downs of depression was insane...but then after eight months it was like a light switch...every day was a better day ..with less anxiety...but with Little bouts of feeling irritable and that medication feeling like I was medicated 24hours aday which I was ...but it was awful...and that started to subside as well...take care.saying a prayer for your family...

Lois, 8 months of hell.  Why?  How did you truly know this was the med for you?  Brooks is on 5 months.   I don't know if me and my bf can handle much more.  Beating us up.  Broke 4 tv's, a CD player 2/3 times a week.  Smash the glass on the Medicine cabinet.  Window, iPads, holes in every wall, door and table.  I wish I had a padded room for him!  

I've just private messaged you here on this site.  Go to the top of the page and on the right you'll see your name, and underneath 'MESSAGES'.  I thought I'd messaged you before but seems not?

Jojo you need some medical help there - for your son's safety and yours.  Poor lad can't go on like that.  My son was like that for the first 4 months (not rage, but just desperate with unconsolable sobbing), and though he was still bad after that it did ease slightly each month up until 9 months.  

Please get in touch with his doctor - maybe he needs a much lower dose??

K x

Hope all is well JoJo...sending you prayers....take care

Lois, can you message me your email address?  Email for me is much easier than the forum.  

Jojo... unfortunately ..I use my husband email address.when I get new one I will send...take care.... hope your doing better...

Lois, this is what I showed Kate...  what do you think?

Here are my notes from the last month..

8/01- increased Celexa from 20 to 25.  8/01-8/04.  Best week!  8/05 seizures without having any anxiety prior. 

8/06 anxiety is back.  Attacked us at 12:15pm for 15 mins.  Calmed down with anxiety 7pm.

Anxiety all week but under control.  8/13 another seizure.  Lowered the Celexa back to 20mgs.  Too many seizures.  Anxiety again all week but under control.  No panic outbursts.  8/19 another seizure. 

8/20 no anxiety all week!  Until 8/28 in the evening.  Attacked me really bad.  8/26-9/02 anxiety all week but controlled.  9/03 BAD anxiety..  it eased up at 6pm on 9/04.  Anxiety for the next 4 days, but controlled.  9/09 one of the worst panic attacks I've ever seen!

Seizure on Sunday..  panic attacks on and off all day.

 

JoJo...has he ever been on 10.milligrams.?.20might be too much..for him.i know his circumstances .but at times higher medication doses combine with other meds..might cause all kinds of strange.effects..i remember when my anxiety set in I had high blood pressure..so doc.gave me medicine for that..and that medication made me have anxiety /panic attacks...but once my anxiety was control with celexa..I no longer needed that blood pressure meds..but I like I said before 20mill.was too much for me..my anxiety was horrendous...once it was drop...alot of those nasty symptoms felt more tolerable...take care

Kate also suggested that to me.  Is that what your gut is telling you?  With all that you went through does it sound the same or does his sound worse?  He's 5 months into it and he's getting panic attacks.

How did you know yourself, to lower your dose from 20 back down to 10 knowing off the side effects that your body needs to go through?  How would I know? 

If I were to lower his dose from 20 to 10 tomorrow, because he already got 20 today..  does that mean his side effects start all over again? 

I do have a feeling you and Kate may be right about the mgs.  I feel like he's going backwards. 

JoJo for me at five months I was still on ten milligrams going thru anxiety/ related side effects ...even wierd head sensation.etc etc..the list is long...but I know that my sensitivity to meds had alot to do with it...if you do decide to lower it do it slowly...maybe 15 for a few months and then 10...I know you said your doc.arent much help..but do consult them on your changes...so they can keep a record..of his changes..take care

We are going to see him on Wednesday.  He went from 5 to 10 to 20.  Why not go from 20 to 10? 

If he goes to 15 would the side effect decrease?  This is horrible.  I feel like I'm killing his brain and his mental state. 

Because I ask my phychiatrist why do I feel so strange ....I said to her do you think it's because I'm sensitive to medicine...and she said could be. lets try 10..and after been on 5 other ssri..on regular dosages and experiencing the same crazyness.i bit the bullet and took the ten..but I think because your son is autistic..and the communications with your son are not up to par.you are only going by his actions.and perhaps his actions are his way of communicating how his feeling ..I know that celexa is a sedating ssri...so I can only tell you that these meds are trial and error...but if you stick to one they do work...I'm praying that he gets better...and because of your son circumstances it's a different situation than mine...take care

What did Kate suggest?

The question is..  and I know you can't answer this but give me the best advice you can.  Would dropping it 5mgs be enough to see a decrease in the side effects? 

Dropping by 5mg is better and kinder to the body jojo.  You may not see an improvement immediately as remember these are slow working.  Dropping by too big a dose can give him withdrawal effects which can be nausea, headaches, brain zaps (just a weird buzzy sensation), dizziness ..... so he doesn't want that mixed with the side effects at the moment.  Again, time will tell.

Speak to the doctor on Wednesday, suggest this, see what he says.  Go in with a plan and see what he says.  If you're unhappy with his suggestion of dropping to a particular amount then be firm - you know your own son.

If your doctor says the meds don't come in that small amount, buy a pill cutter and divide them up that way.

For me lowering my dosage...was a big change...as far as the side effects...it's hard to say what is going to happen to him... because of his circumstances..please ask your or tell your doctor's what you are doing..but my phychiatrist keeps telling me that these medicine is very strong..she has big men as in very tall..that couldn't even tolarate ten..and she has them on five milligrams...

Ok so I will lower it to 15 tomorrow.  And who knows how long that 5 extra mgs will stay inside of him for.  Does this mean we are starting from square one?  Do I now start counting the side effect nightmare all over again after being on this dose for months? 

Would this make his recovery even longer?

No you're not starting from square one, you're simply adjusting the dose.  The body will start to adjust.  You don't get the same side effects when lowering the dose, that only happens when increasing.  Usually lowering you get headache, dizziness, brain zaps (weird buzzing head), nausea ..... but by reducing by 5mg this may not happen.  When I came off meds I lowered by 5mg each time and spent a year coming down from 20mg - I had no withdrawal at all (unlike the first time I did by 10mg).

Again we are all different and we all react to different doses, increases and withdrawals.  5mg is quite small to the body won't notice the difference so much.

 

We are going on Wed, I'm starting tomorrow to decrease.  I tell the doctor what I'm doing, he's not telling me because he doesn't understand how the meds work.   Knowledge is power.  Anyone can read a text book, but living through it is a whole diff ball game.  

Just when I think I know...  then this past wknd happened and I know nothing.  I work all week and like everyone can't wait for the wknd.  I dread them now.  It seems that all his bad stuff comes out on a wknd.  Lucky me...  

You know I take notes.  I mark my calendar, I'm more on top of him than I'd be on myself.  

As always, I appreciate and I value you and Lois' input.  Anxiety is one thing, but that panic attack is a nightmare!  

Lois...  he had a really good day today. Now what do you make of this?  He was a good boy all day..  no issue.  

What is a person supposed to think now?  Should I still lower it to 15?

Hello.jojo...i would wait it out....and monitor him...that's a hard decision because of the ups and downs..but that's how this med works...I would play it by ear.... take care

I'm happy his doing better....take care..

Lois...  his anxiety came back as the night went on, but on a smaller scale.  

I really don't know what to do.  So ur ups and downs on 10 were severe? Or managable?

Both ....

When they were severe, how long did they last?  Like a day, a week, a few hours, just moments?

Moments....

His severe was the entire day on Saturday, it started Friday evening, all day Saturday and Sunday morning, then moments on Sunday.  He'll be fine, laughing then boom!  When it was moments, was that just severe but then you still have the normal anxiety the rest of the time?

Yes it was moments and waves of anxiety....and moments of panic...it was a roller coaster effect...the cycle of both was like that for me for quite a few months..

How many months into it did the severe moments stop?

The severe moments for me lasted around three months....

And the only way I push thru when they were severe..was with zanex....I had no choice....

From the moment you started or from the time you started on that dose?  Brooks is 5+ into being on this med.  This is why I'm not sure what to do at this point. 

He has seizures, he can't take Xanax.  So how long should I give this 20mgs?  Because I can't live through much more of his panic attacks. 

I was only on 20 for one week...and then straight into ten the next week...I really didn't start to feel better until between six to eight months...but after the eight months..that's when that dreadful feeling of panic plus anxiety left..I'm still recovering... anxiety is in our system naturally..but the celexa just manages to stop it somehow...without it my anxiety is horrible...but with celexa is manegable...take care

I feel if you see more panic than good days...take katecogs advice ...and run with it....

Ok I have to guess this makes a huge difference.  But he started back in March.  I thought it was May.  He's been on this for 6 months...  and still not right.  Any thoughts?

It could be that 20 is to much for him.i mean either way if the medicine isn't right for him...your going to have wean him off anyway...but because he has had some good days perhaps try the slow process of going down to ten,.

All of March 5 mgs.  All of April 10 mg.  May 1st started 20 mgs. 

Every time you up is starting the process again...

I think the medicine is right for him.  Only because school used to call me every day to pick him up for attacking staff and classmates due to his anxiety.  I used to take Brooks all over the US alone!!  The anxiety turned him into this monster.  No anxiety..  no violence.  I know that it's working.  Kate did say it took like 8 months for her son.  To be honest, I won't get any help from his doctor.   He's totally clueless.  He had told me that the worsened anxiety would last for 2-4 weeks tops, then it goes away.  So the only thing is deciding to drop it to 15 mgs instead of keeping it at 20 mgs.  I get it, the anxiety will always be there.  But I feel that after 6 months, the panic attacks should not happen anymore. 

It took katecogs son 9months...it took Kate 6months.it took me 8months... because of his circumstances and the other meds... only you can decide that for him...you said you are going to doctor with him tomorrow...see what he says...take care

Lois...  I haven't heard back from Kate.  Maybe she went away for a few days.  He had another good day in school.  But got the panic attack back on the bus ride home. 

I'm still here  ... just have a busy week this week - day and evenings eek!  I might not catch up with replying but I am still reading everything.

I agree with Lois - we've all had our own personal experience of these type of meds and also recovery time too and your son could be different again, especially as he's on other meds too etc.  It may be the 20mg is too much so reducing by a small amount might be the answer, and if you do need to change meds one day he'll have to wean off anyway.  I hope the doctors appointment goes well tomorrow - discuss your ideas with him, see what he says and hopefully you can work together.  Fingers crossed.

 

Kate, I rescheduled the appointment for October.  I have to agree that if the med wasn't working, he wouldn't get any relief at all.  Prior to the Celexa, he was so bad that school called me every day to pick him up, he actually got kicked out and is not in a diff school that understands anxiety and can handle outbursts.  But like I said, prior to Celexa, life was really bad.  There wasn't a lull.  After Celexa there are good moments.  I counted wrong, it's been 4 months and 12 days he's been on 20 mgs.  If anything, I will lower it to 15 mgs.  I am thinking I will determine that how the rest of this week goes and especially the upcoming wknd which lately seems to be the hardest for him for some reason. 

Yes I think the meds are working for him, as you say he wouldn't be having the quieter spells.  So didn't you go to his doctors appointment today (you've rescheduled for October)?  Yes definitely play it by ear - lots of people do have to adjust their meds.

K x

His appointment was for later on today.  He called in his refills and instead am going back next month.  I won't get the help from him that I need.  He believes this med works after 4 weeks.  He truly believes that.  Back in July I brought Brooks to his office and Brooks was having a meltdown.  He said the meds aren't working.  He wanted to wean him off and dope him up with Haledol.  I just asked for refills and told him I'm keeping him on the Celexa.  So if that was back in July, you know he isn't going to want him still on Celexa in September if he sees another anxiety attack.  I am hoping with the continued support of you and Lois, it'll be enough to get me through.  But if I do anything.. I will just lower it to 15 mgs. and see if his bad days get less severe.  Heck, on 5 mgs. I saw an improvement.  Before 5 mgs I wasn't allowed to hug or kiss him which he used to live for.  Now he drags us into the bathroom and looks in the mirror while we hug him and kiss his face and neck and watching us do that makes him so happy.  So I know for a fact he can't live without Celexa.  It's just the dosing that's the question mark in my head. 

Joann 

I think he's an idiot.  For one thing there isn't a 'one meds for all' and there aren't one set of symptoms or recovery period for all either.  Do you have any other doctors in the practice you could see instead?

Yes lowering is good to try - many people have to adjust their meds and many find a different SSRI suits them too. 

Yes Kate you are right .I remembered my md.asking me what kind of ssri I wanted...I'm sitting there thinking what and idiot...that's why I went to private phychiatrist...md..don't have a clue...and the young phychiatrist have some catching up to do...

He was the ONLY doctor willing to take him.  I don't have any options. 

My decision to lower it will be based on when and how bad his next day will be.  He had him up to 30 mgs because he felt 20 mgs weren't working after a month.  His seizures got so bad after the 30 that I thought I was going to lose him!  That's when I dropped him to 25 and still has the same problem.  

So his seizures are not too bad now.  So it'll strictly be based on his level of anxiety on his bad days.  

Sad huh that we have to be the doctor, the nurse and the patient.  

Joann

I'm not sure how the system works over where you are, but here in the UK you have a number of doctors in a practice and are usually assigned to one but can see any of them.  They will see you regardless of who you are.  They have to.  He's a human being for goodness sake - what's wrong with the other doctors?  Can they refuse to see him?

 

Every doctor has their own practice.  If there is a group of doctors, they can refuse to see a patient.  Every doctor prior to this one has seen him once and never seen him again.

It's all about money and not the patient over here.  They can and they do refuse to see who they want.  No law 😢

Before this doctor, it got really scary for me because knowing he needs medication and not having a doctor to prescribe any put me in a panic.  Horrible!

How are you and your son doing...just thinking about you people...take care

Hi Lois, he is having 'overall' a pretty good week.  He has had his moments and when I say moments I'm talking like 5-10 mins..  Nothing like full blown all day and night panic attacks.  But when they happen, it's scary because we don't know how long they will last.  We had such a nightmare last wknd that I dread the wknds now

His teacher actually said to me the other day "this has been the best we've ever seen him here at school".  So yeah, it's working

It's having to come up with a plan to get us through his panic when he's ripping the house apart.  But each day that it's a good one I am holding my breath.  He did end up having a seizure on Tuesday afternoon.  Amazingly enough it only lasted 5 seconds. 

How have you been?  I so wish that you and Kate lived in the US.  I would love to meet the both of you. 

Joann

Iam so happy for him..yes the waves will be there for a while..I still have those waves ...but now they last seconds...take care...and Always saying a prayer for your family....

Thank you so much Lois for your encouraging words and prayers.  I will let you know and Kate how his wknd is going, that is the true test. 

And I am still giving him the Benadryl, throughout the day.  Unfortunately he'd be in bad shape if I didn't.  I am still on the fence about lowering the meds to 15 mgs.  We're 4 1/2  into being on 20 mgs and he couldn't survive

Sorry..  he can't survive without the Benadryl.  So his good days aren't truly good Celexa days if you know what I mean. 

And for this reason, I am stilling thinking about lowering his dose.

JoJo that's a desition only u can determine..if his still doing just ok..just leave be..take care

Lois, I cut him down a pill of Benadryl this morning and he's had a very rough day. 

JoJo don't cut him by whole ..at least by half...so he doesn't suffered...take care

Lois, to get him through a morning and afternoon, I have been giving him 3 Benadryl's a day.  This is against everything I believe in to do.  But this is how bad his anxiety has been.  It's just enough to allow him to eat and function.  So I gave him 2 this morning and it's been a rough day.  His eyes are all bugged out, dry mouth, hasn't eaten or sat down.  I was hoping he was getting better at this point.  So I tested it this morning.. 

Perhaps cut it down to to2 and half..so it's not so rough on him...and wean slowly...

Hi, hope your doing ok.

i dropped back to 20 mg as was given 40 mg propranolol for anxiety, still feel over medicated and thinking of changing to slow release venlofaxin.

Lois, back to really bad anxiety.  Am I better off lowering it to 15 mgs?  Will the side effect super anxiety decrease if I decrease the mgs?  

For me it did....I think u should take the plunge... because like I said before ..if ain't the right med..you will have to ween anyway... because upping wasn't a good idea...take care

My phychiatrist says that she has big six foot men on 5milligrams because they couldn't even handle ten ..let alone twenty...so yes it was more kind to my body been on 10...

Hi there Katecogs

I am asking for some advice as I can see by reading your posts you have lots of experience and knowledge of Cit.

So briefly I had a melt down when I started a new job , I had been in the same career for over 20 years but it was very stressful and I needed to change , new job was great but I totally crashed! My boss was very supportive which is great . I had 6 weeks off then started back on phased hours , all was going well then two weeks ago anxiety came flooding back , dazed feeling in my head , the odd dizzy spell , no appetite, some of the side effects when I first started on Cit ! So strange .

I have been on 20mg for 14 weeks doc put me up to 40 on Friday but to scared to double the dose so I'm adding 5mg a day and see how it goes.

Do you think I'm experiencing the Cit side effects again out of the blue or could it be anxiety symptoms, they seem the same when I read about them on the internet, I have also been going through the menopause for the last couple of years and get hot flushes during the night which disturbs my sleep and I wake really early which doesn't help.

Woo so many questions for you sorry!

I suppose I'm asking do people often have set backs after this many weeks and should I up to 40mg ?

Such s shame as I was starting to feel fairly good again at 10-12 weeks now it's all gone to pot 😩  

Feed up with stuffy woozy spaced out head feeling !

Any advice would be appreciated.

Thanks 

Matt 

Hi Matt

14 weeks on Citalopram is fairly early still, yes.  It most definitely is a setback that you had - it can take months to recover and yes you will get these right through recovery.  It took me 6 months to recover on 20mg, and though I had setbacks throughout, they did get easier as time passed.  They seem to be a necessary part of recovery, so you can't avoid them, no matter what dose you take.  A hight dose won't make recovery happen any quicker either, just that different doses suit different people.  Some people find 40mg way too much for them so gauge how it goes.

Personally I wouldn't go up to 40mg but I know that 20mg suited me.  Yes you do have to wait for the meds to settle and those waves will come and go (setbacks).

Each time you increase you will get side effects again, but they will wear off.  Just because you have side effects or a setback doesn't mean the meds aren't working or that you need a bigger dose - its how the meds work and how recovery works and it is a waiting game.

K x

Hi K

Thank you for the reply , I suppose I knew it's all part of the recovery but I guess we all need reassurance as the anxiety plays horrible tricks and you start thinking your never going to recover ! 

I'm not gonna take the extra 20mg I'll take 5 in the morning with my usual 20 and another 5 late afternoon and see how that goes .

It's such a complicated thing this mental health carry on , who could know how terrible it is until you suffer with it , my heart goes out to all going through it.

Looking forward to getting back to my old self and being able to give positive posts like you do.

Thank you 😁

Hi Matt

Yes that's so true about anxiety playing little tricks on you.  Anxiety makes you fearful about everything, and so it'll also make you fearful about not recovering too.  Negative thoughts are a side effect of anxiety.  You think recovery only happens to others.  I thought exactly like this too.  But you will get through this.

It is a complicated condition, though I found reading about it began to unravel the scary mess I found myself in which helped take a lot of the fear away and put me onto one path.  Once you're out of it all you can see it for what it is.

Yes - nobody knows what this is like do they.  You can explain it to be people but they still wouldn't get the full horror of living with this terrifying thing daily.  You feel alone, are afraid to talk about it for fear of being mocked or not believed, and you spend your days trying to find your way out of it.

You will get back to being yourself again.  I'll message you with a link that I share with many which I'm sure will help you too.

K x

I sent you a private message Matt.

K x

I just find that totally unacceptable that doctors would refuse to see him after seeing him just the once.  What sort of people are they - inhumane?

 

Hi K

I didn't get a private message 😩 

One other thing if you don't mind advising. I took 10mg extra yesterday, 5 in the morning and 5 early evening and I have nausea today , could that side effect happen that quick ? 

Tempted to just do 5mg a day for a week then add another 5 to take me up to the 30mg , what do you think ?

Another question lol 😂 do you think swapping to Floxotine would be better ? Just don't know what to do for the best .

I'm going on holiday in 2 weeks and hoping to get some form of excitement about that ! Can't decide weather to stay off work till then and rest , dilemma, why can't answers just be simple 😩

Thank you 

Hi K

I found it 😁 Thank you 

Yes, increasing medication will give you side effects again, and nausea is one of them.  It can happen that quick.  5mg might be the answer yes - when I withdrew from meds I did it by 5mg and had no effects at all - my body didn't really notice - so increasing by 5mg might be better.  We're all different of course.

No - I wouldn't swap medication.  Not yet mind.  I've seen many people who chase recovery and end up in a worse situation.  By this I mean they don't see results quick enough on one medication and increase their meds causing side effects again which alarm them.  They increase again causing yet more side effects and don't wait for each increase to settle.  In the end they swap medication which causes yet more effects and they go on like this hopping from one to another hoping to find instant relief from anxiety.  

That's not to say you shouldn't swap though - but you really should give the medication you're on at least 5 months or so before deciding.  In that time, if you haven't had any good days at all - then swap.  If you have had good days mixed with bad ones (setbacks) then the meds are working and its a matter of waiting it out.

It took me 6 months to recover on 20mg, and during that time I had many, many setbacks (blips).  My mood was all over the place and some hours, days, weeks I'd feel I was getting there and the next I'd be deep in a setback.  Its always 3 steps forward and 2 steps back.  Second time I was on these meds it took longer.

Your holiday sounds exciting!!!  Don't expect anything by the time you're due to go though ...... if you expect to be well, excited or anything else then you will probably be disappointed by the time if comes round.  Don't expect anything ...... but if anything occurs then it'll be a pleasant surprise   

Have a read of the link I sent - I'm sure it'll really help.  It makes so much sense and explains how to just let the anxiety be there, accept it, relax towards it, work with it there ....... this is the way to treat it and the way forward, not by fighting it.  It really does work.

K x 

 

Yes Matt....if it wasn't for Kate I would of ended up a worst guinea pig.. swapping meds trying to find the comfort..which never happened after 5 different ssris...been on 10milligrams...15months and counting...take care

Hello JoJo. How is your son? always praying for your family.take care.

Thank you very much Lois for thinking of us.  Funny you should ask..  I have a question for you.  Brooks goes in and out of different levels of anxiety.  I haven't seen him truly anxiety free in about 5-6 weeks.  All different levels.  Is this normal? 

Yes ma'am.. That wave feeling is so annoying....like I said I still get it ..but only for seconds....unlike in the beginning it lasted days...at five months I was still struggling...

Did you change dose...?

No.  I am trying so hard to keep him on the 20 mgs.  He's almost 4 3/4 months on the 20 mgs.  He's so far into it. 

Saturday he had a rough day, but to my surprise he snapped out of it like a light switch at 7pm.  Ran to my bed, giggling and laid down and fell asleep.  Just like that.  Then on Sunday he really wasn't bad at all with anxiety.  I'd say on a scale of 1-10 it was a 6. 

He's down another 5 lbs.  I am so upset..  He is now 108 lbs.  He got these disgusting canker sores in his mouth on top of his mouth being all dry over a week ago.  Poor baby hasn't really eaten in such a long time.  He is all skin and bones.  The stupidity in our laws over here doesn't allow a school nurse to give over the counter canker sore stuff to a child without a note from the doctor.  I bought 2 topical medications for his sores.  So he eats a little bit at night after I give it to him. 

Wow i had a couple of those nasty canker sores.in the beginning..how strange. But they soon disappeared...and the Dry mouth was severe for me also...I drank alot of insure shake products... because I couldn't stand the sight of food...I'm praying he comes out of that funk...take care

I tried so hard for him to drink Ensure.  He refuses to drink anything other than water.  I think the Ensure because he is having such a hard time is too thick for him..  even though it's really not thick.  You know it's all in the mind.  And before this, he used to love chocolate milk. 

So you had the sores too.  Interesting.  Lois, I hope to God he comes out of this soon too.  He's wasting away to nothing!  The last time he was at the doctor, he probably weighed 130lbs. and that was 2 months ago.  I can bet my life he would not agree keeping him on this med if he knew what he looked like.  He believed it took 2-4 weeks for the med to work.  He must think everything is peachy at home because I haven't reached out to him for anything other than renewing the med. 

I'm sorry, at what month.. your 6th month before the anxiety started getting better?

Yes it was small doses of relief at six months...but at eight months that's when I really notice relief...trust me he will get his appetite back..I was a walking skeleton for five months...then all of a sudden food Especially carbs came a hollering..celexa in the beginning the majority of people loose weight...then you gain it all back plus some..

Thank you for that much needed info.  I will welcome any weight on his bones right now.  He is so close but yet so far.  Nearing 5 months!! 

It will all resolve trust me..and Kate...and anyone else that you think is rational on this medicine...take care..

I see that the only 2 on here that stuck it out are you and Kate.  I live by yours and Kate's words.  I never would have lasted this long without you and Kate.  Never.. 

 

Your absolutely right most people on here when they start feeling better...they no longer post anything for anyone...I for one is was very grateful for the comments katecogs wrote or is writing.because she's the only only one that explains it thru and thru...the way most of us want to hear it ..and there's nothing wrong with paying it forward..for the ones in need...

Hi jojo

My son also lost loads of weight.  This was the first thing I noticed before he confessed to me his struggle.  He's tall and very slim anyway, but I remember one day thinking how much his cheek bones stuck out and his trousers were loose.  He started to look really gaunt with sunken eyes - a haunted expression.  I gave him really small meals, soup, lots of tea (that's when he started drinking it), ice cream ..... anything to tempt him.  His appetite slowly increased and he got back to his original weight after about 6 months or so.

K x

Being that he's autistic and having anxiety, he can't sit still.  He walks all day when his anxiety is bad.  In circles, back and forth.  That adds onto to burning calories that he just isn't taking in.  He basically only eats at home I. The evenings. He's like you I guess.  He has better evenings.  He can go all day and eat at 8-9pm and it's not much.  Yesterday I made chicken pot pie and he had chicken with the veges.  I noticed he acts like it's too much effort to chew on his food. Tonight I made him chicken soup with grilled cheese.  He didn't chew his food, put it in his mouth and swallowed.  He is scaring the heck out of me. He almost had the food stuck in his throat. 

This is why I am trying my best to stick out 20mgs.  So close to 5 months thatit would kill me coming this far and cutting down..

Thank you for sharing about your son ?

I remembered when my anxiety was bad I Pace back and fourth in the apartment..and when it was really bad..my husband would take me outside to walk around the complex..just to release that yukky feeling...take care

Sweet baby Jesus!!  He smiled, laughed and skipped today!!  The anxiety was in and out.  Bad at times, then t was like POOF... he started skipping around and laughing and being the old goof ball he used to be.  He ate today!!  He's eating right now 😁.  

Wow ...how beautiful to read that...may the days weeks and forever grow stronger....take care

I wish I could show every doubter that I was doing the right thing.  People will see what they want to see.  I know not to get used to this, but what a beautiful sight!!  Skipping and laughing.   And eating!  I keep wondering if I'm jumping the gun to be happy..  but this has to be real.   It's right in front of me.  

Absolutely...my husband thought he would never see my normal self again..but he did....what a rollercoaster ride this illness could be...but to have hung on its a victory...😁😁😁😁😁

    brilliant!!!

I remember the first time I heard my son whistling - it was so amazing!!  Such a wonderful sound when you see your baby enjoying something so simple after such torment they go through.  My son still had the off days, but it was happening.

So, so glad to hear this jojo.  Yes there may still be some anxiety still to come, but he's made such progress and they way is definitely up for him.

K x

 

Oh I am aware the anxiety is there and it's coming back.   It stinks that I got to see that beautiful happy silly personality again and it will be gone again tomorrow when he wakes up.  When he came home from school, my mom said he was panicing.  Then it was about 1 1/2 hours later she called me and said "um, he's calm".   "He is acting as if the anxiety is gone".  We've been flipping out since 😁👍🙏?. 

Thank you both so much!  If you ladies didn't describe it the way you did, I wouldn't have stuck it out, understand what's happening, or even been able to enjoy this moment.  

Always in my prayers...hope all is well..take care

Thank you Lois, it means a lot to me. 

He is showing signs of getting a seizure or seizures this wknd.  So his anxiety will be once again, out of control.  All I can hope is since I've seen his old self come out the other day, the anxiety he gets from the seizure will be a great deal less.  He actually had a great day yesterday, not happy, but he was mellow which is fine eating like a little piggy which he needed.   I know this is all seizure related, but at 5pm he lost it for one minute and after that he was fine but the bug eyes and dry mouth came back real bad.  He was making these weird faces as if he was just trying to swallow. 

I'm just so happy that I finally seen the med working!  So this is the back and forth that you and Kate told me about. 

Absolutely....take care

Is strange out of the 34million people on antidepressants.only a few reply or comment on any site...😎

Forums in general, I find older ones, and very few with current discussions.  People don't want to be bothered?  Even all the people on this one. 

Yes, the back and forth symptoms show the meds are working.  If he wasn't having that and just being flat / anxious all the time, then that's the time to change meds.  Luckily he's all over the place (and I mean that in a nice way ..... as I know its not nice for everyone really) 

I think when people see people having conversations regularly between themselves they probably don't reply as maybe they don't want to come in on an established conversation???  I've done that - I often see a particular group chatting away and though I read it and keep up to date, I don't add into their conversation 

How is your son today?

K x

Something I don't think I mentioned this before, but he has gotten more verbal when he isn't anxious.   What an incredible added bonus I wasn't expecting ?.  

Yesterday the anxiety turned off like a light switch at 5:30pm.  He was laughing his butt off 😆.  Just happy 😊 

This morning he got his seizure 😞  Been very anxious, but he has it all under control 👍

Yes JoJo..before antidepressants my verbal thinking was all over the place...then during the celexa I couldn't concentrate verbally..that all subsided ..now everyone says I'm like a talking parrot none stop....lol

Ah ha...  so it's not my imagination.  Good stuff 😁 .   We are close but yet so far.  I can't wait until it gets really better.  

As I progressed through recovery my evenings began to be calm and happy - yet every morning I'd wake with horrendous anxiety.  Seems he's maybe reached this too?

 

Hi K and all

I just found replies and other messages in my junk folder ! Lots of great messages and support, never occurred to me to look there !

Anyway day 10 of the extra 5mg , so incredible that just an extra 5mg and there is still side effects ! Nothing like when I went from 10 to20 but still slightly more anxiety, dry mouth, sweating more and general thick head , at least it lets me see it's working lol .

I went to work last week but just couldn't this week , need to take some time out and try to think of getting well again before I can give 100% to a new job , I'm hoping they will have me back after my holiday which is on Sunday for two weeks ! Still not getting any happy feelings about going and it all seems a bit to much but hoping when I get there the rest and change of scenery will do me the world of good .

I think I'll stay in the extra 5mg for a few more weeks and if I need more I'll try another.

Hoping that's these small side effects go soon .

Thank you again for your support and great advice .

Matt 

Hi Kate, Hi Lois, I don't know why but I'm having a lot of problems on this website the last 2 days.  I posted a comment and wondered why nobody responded and I can't even find it on here.

Something odd.  His pattern has been a lot better nights vs. days.  But last night the light switch was turned off and the high panic came back and it was all night, he barely slept at all, and bad anxiety all day long now.  Is this right?  He did have 3 seizures this past wknd and that actually was a lot to have, and I really thought we was going to have another one, maybe it passed but the anxiety stayed.  I don't know.  Like why would he have good nights, then boom, a majorly bad one?

That's the ups and downs of this med..so for me to say is normal...that's just the way it was for me...the only difference is his circumstances..other than that is up and down... take care..

Lois, you weren't like Kate?  Kate started with better nights, then it went into days, then mornings.  So you were all over as far as having a good time of your days? 

I started having good evenings...then it got scattered..all over the place some times in the evening where bad some times in the morning where .. horrible..at least with the evening I was able to kill the anxiety ...with a sleeping pill...take care

This is crazy and so very frustrating.  Now I don't know what to expect.  How far into your recovery did you go from having good nights to having good scattered times of the day?  I know everyone is different, I love getting you, Kate's and her son's recovery steps. 

I would say around the 8month mark every thing became more manageable...

How far into it when your good moments were all over the place? 

I would say my up and down mood...lasted three months...

The good moments where all over the place ...but I would have to say the good stable feeling started at 8months

I remembered that bug out feeling with my eyes like bulging out with anxiety from celexa...lasted for a month....

Hi Matt

Haha I've done that too   

Yes its quite incredible that some of us may be more sensitive to meds that others and just a small amount can affect one person and not another.  It is better to do it by small amounts then - unpleasant but as you say not as bad as from 10 to 20.

It can be hard returning to work - your body is no doubt very tired too.  When I wasn't well I had days off as I sometimes just couldn't face work - though on other bad days when I forced myself to go in I found being in company was helpful.  When you do return to work you have to try to be kind to yourself too - having anxiety is just like having any other illness, so you wouldn't go back to work after a bad bout of flu and expect to be on top form.  Ease yourself back in - take things slow.  I know its hard to be treated as 'recovering' too by work colleagues because they can't see anything wrong with you and they don't understand the 'real' anxiety.

A holiday sounds fun!!  We often think the worst of things leading up to holidays, but in reality its fine when actually there.  Its the anticipatory anxiety thats the worst - not the actual doing.  A change of scenery is so refreshing.

Yes stick to the extra 5mg - let it settle and see how it goes for a while.  As you say you can always try another 5mg, but do give the first 5mg long enough.

Side effects do fade away given enough time 

Hope you have a good holiday.

 

I went through a phase of having problems with this website too (last year I think) - I just didn't get any notifications of posts at all.  See if it happens again ..... sometimes there are glitches (or its gremlins).

Yes the pattern can be quite random at times.  As I was getting better and the anxiety seemed to be getting less, I'd occasionally get a really bad blip right out of the blue which floored me.  Sometimes I was overtired / done too much, maybe had a bit of stress, an upset ....... and sometimes even when I'd been happy ...... it was odd, but my body just seemed to react.  Treat it like a bad case of flu ..... even when you're recovering expect relapses every so often.

A lost of people do have a different recovery pattern / path.  Lots have had the same as me, some people recover after 3-4 months.  Some have no problem at all and others suffer real bad with side effects.  I've been on these meds twice and the second time around I had a different experience - it took longer and I was so depressed for months.  All very weird.

There seems no one pill and no one true path for all.

It's nearing 5 months and he's still getting the bug 👀.  

Oh God relapses????   Do you get a warning?  

By relapses I mean these waves / blips that he's already having.  Relapses just refers to if you'd had flu.

 

Hi K

Yes what a roller coaster! This extra 5mg must be taking effect as I've got all the side effects now , I'm into week 3 of upping , so tired yet can't sleep feel medicated like having a thick woozy head and having to pee a lot ! I suppose this is positive as it shows the increase is taking effect just feel really low and anxiety is unpleasant again.

My husband is ironing my holiday clothes we go on Sunday morning for two weeks , no motivation for it at all but praying that when I get there I will enjoy it .

Fingers crossed I will see some improvements soon , last night was ok actually so shouldn't forget that.

Keep posting and helping people your such an inspiration and give so much hope to all of us 😁 

I'll check in soon hopefully with some positive news for everyone.

Thanks

Matt 

Yes the whole anxiety thing is a roller coaster, and if we think that's bad enough then being on the meds is another roller coaster.  

Those are definitely side effects - sleep, thick head etc and as you say, shows the meds are working.  

Try not to worry about having motivation, even if it doesn't appear on holiday.  Its part of the side effects again so just try and go along with it ...... for now.  Having an ok night is how recovery happens ...... reeeeeeeeeeeally slowly, in fact so slow you hardly notice it creeping up.  This will be mixed with bad days / weeks but it seems thats the way the meds work.

Husband ironing shirts eh ...... not bad  

Anyway - try and accept whatever the holiday feelings bring - it won't always be like this.  You're recovering, you're delicate ..... so take things gentle.  Don't force it.  It'll come and there'll be plenty of holidays in the future when you'll be feeling completely different.

K xx

Help me please.   

Why is his anxiety worse this week?  Is going this backwards being so close to 5 months normal?  I had to give him 4 Benadryl, his anxiety was that bad.  

No he's not going backwards - even though he'll get these dips (some bigger than others) the general trend is still upwards.  These dips can happen at any time.

I used to find that they never failed to shock me ...... you think phew that one's gone as I entered a calm period.  I'm sure when the next happens you sort of forget what it felt like the last time, so when it starts you instinctively want to start fighting it.

If your son doesn't understand about not fighting it or that they will come and go, ease over time then that's quite difficult for him.

It took me 6 months to recover - thats when my daily continuous finally stopped.  After than I still had the occasional blip which amounted to nothing, and they eventually fizzled out.

Even today I noticed if I'm over tired I can feel slightly 'different' but I know to catch up on my sleep, rest and it soon sorts it out.  This is because I'm not on meds anymore ..... didn't get this on meds.

K x

Daily continuous 'anxiety' finally stopped ...... missed that word out 

It makes me so frustrated and am so tired of this.  Yes, I've seen the light, yes I know it's working only because he has been so good in school in spite of all this anxiety.  School keeps his mind busy but before this med his behavior was all over the place in school.  There was a period school was calling me every day that he violent and they had to restrain him.  I feel that his anxiety days are a lot more than his non anxiety days. 

I truly don't know what I would do without you and Lois.  When the both of you come to the states, we are going out for lunch or for dinner.  Love you ladies. 

Hello Kate...hope all is well...how long would you say blips continue thru recovery?take care

Lois, to me this is not a blip.  To me a blip is a once in a while thing.  He still have anxiety every single day.  Last week it went away each day as the day went on.  It came back on Friday and hasn't left him yet!  This is 6 straight days with no relief and back to no eating or sleeping

Trust me JoJo.i know it to well...at one time I wanted to up my dose from ten . milligrams...but been that I didn't do well on twenty... phychiatrist said no.but those anxiety days still linger...my anxiety has been around me for 30years Plus...it's just maneable now...and because this med.is so slow acting ...is like a forever wait...it's just so slow recovering...that alot of folks don't have patience...but I certainly do have patience..I still have my down days...which your son could understand..this anxiety demon...take care

Your anxiety days still linger?  You're not recovered?  Long often and how long to they last? 

I'm recovered it's just those blips do come when you least expect it... Especially after receiving bad news from family death.and what I mean by lingering are those strange side effects ...that linger..they come and and go...that's just for me... everyone is different...but compare to how I felt .. before... I'll stick to my celexa

So the fact he is still having panic attacks for days is normal at almost the 5th month mark?  I know everyone's body is diff.  I am and he is just so beaten down from this side effect!  I am missing events around me all the time because he's always with anxiety.  

Hi K

Thanks for that , it helps to see sense written down !

Had a pretty good afternoon and evening yesterday, today not so good , anxiety and feel totally drained.

Have to just keep going and waiting for the old me to return and life get back to some nomality , sometimes seems like I'll never get there !

I WILL ! We all will 😁 

Matt 

It is very frustrating ....... and often the reason many people give up.  People are foxed into thinking the meds aren't working when these up and down period just seem to go on forever.  When my son was recovering it was around 6 months when I began to wonder if they were the right meds for him as he was up and down loads ....... when I began to suddenly notice big changes in him.  I reckon it was 9 months before these dips really stopped.

Trouble is if your son doesn't understand the difference between big surges of anxiety and mild anxiety he may be reacting to it all by fighting it.  Its only natural to do that.  Usually people can start to tell in themselves if the anxiety is lessening and are able to go along with it and they start to know they're improving.  If your son doesn't know he's improving he may just still be reacting to any anxiety - hence why you can see the amount of dips he's having because he's reacting to them all.

You're on ...... dinner it is   And when you visit the UK you can drop by and say hello here too xxx

I've been to the States once - last year, San Francisco.  Whereabouts are you?

Hi Lois

I think my blips lasted a good year ...... don't freak at that though   I mark recovery at 6 months because that was when I started waking up in the morning with no anxiety at all, and this lasted throughout my whole day.  However, probably for the next 6 months I'd have little flat days / weeks (no anxiety) and guessed these were blips, but they weren't bothersome.  It was like having a blip without all those awful feelings - but I could tell something was there.

So the anxiety had gone by 6 months but I did get flat / low times.  They eventually stopped.

 

That's I meant to ask those flat/low times moments...that I get periodically...not bad .I seem to get them when I'm alone...but when hubby comes home bang gone...your the best kate....

Yea its strange how one day your feel ok and the next like you're back to square one again.  I even found my mood / feelings could change in one day too.

It is draining - it makes you feel tired because your mind is continuously thinking of it all day long.  Its exhausting when your mind doesn't rest.

I found when I had bad times it often followed after I'd overdone things physically - being tired made me feel worse.  That still affects me today - I don't get anxiety anymore but I can feel flat, so I make sure I catch up on my sleep and rest.

I know it does feel like you'll never be well again.  When I used to feel well I felt I could cope with anything, and when I was back down in the hole again all that flew out the window and I'd feel hopeless again.  Such a contrast.

I remember the first time I felt normal - I stood still hardly daring to move in case it disappeared   It was like a light switch had suddenly come on and my mind felt free.  Of course the anxiety came back the next day but I began to get more of those normal times (sometimes only briefly) as I passed through the months.

Yes keep going - it'll happen in its own time.

K x

Mine lasted about a year, but they weren't all that bad as time went by.  Being on your own can feel a bit unsettling so maybe that's just your body saying this - it then feels more comfortable when somebody is home.  Your body does it out of habit too - if you've not been well and felt better when someone is with you, then that habit will linger for a bit longer I expect.

Working through those flat times with keeping yourself busy (not going about things frantically) but just working with it there, will eventually give your body the message that its ok, it doesn't bother you.

I had a long period of flatness the second time I was on these meds which just dragged on for months.  It wore off in time.

K x

Yes I see what your saying...I'm going to get a dog..my therapy dog..my husband says that will keep me busy...take care..

Oh that's such a good idea!!  Animals are certainly very therapeutic - I've read just stroking them makes you feel calm and actually lowers stress levels.  Some hospitals allow therapy pets to visit.

Taking the dog out for walks is good too - exercise and a companion.  My daughter has a pug - funny little characters and devoted to their owners.

Great idea.  Exciting 

I'm in New Jersey.   That would be great if I can meet you!

U see you've been a busy little beaver today 😂 

Lois...  I don't suffer like you do, but I have a shih-tzu ..  and he's been my life saver!!  

He helps give me that inner peace that I need so bad.  After Brooks goes to bed and I can breathe again..  I lay on the couch with Buster and cuddle ?

That's awesome....

Just the hugging, and petting and his love back to me helps me lose all the gunk that's in my head from Brooks. 

?

I too had a shitzu...that pass away from old age five years ago.broke my heart...that's one of the reasons I been holding off on buying a dog...it's sad when they pass.but I learn thru this recovery that we are born to die . including animals...xo

I guess this forum doesn't want us to chat about dogs ... only celexa.

I've already had a reply hijacked and never posted on here...  more than once.  Isn't it all about the same goal?  Inner peace and anxiety free?  

I'm not going to keep the fires burning.and just concentrate on celexa..lol

Hey 

Just keep chatting it's keeping me going today , having a bad one and all this chat helps 😁

Omg.iam happy I'm not the only one who finds comfort in chatting on this forum..about celexa dramas...

I think sometimes we just need to know other people are out there going through the same s--- and seeing how they are doing and coping and seeing all the positive stuff , definitely helps me 😁

Me too!!  

This forum has kept my sanity in check.  It gives me hope. I still don't get why it has to be such a drastic roller coaster ride, but we are not alone.  

Ah ha ..... well, my husband and I plan to do a 'Fall Cruise' one day which takes us up that side of the US and up into Canada ..... I'll keep you in mind and see if it goes near there.  Won't be for ages yet mind 

This is the only forum... that has kept my mind at ease...all the other ones only tease you information..or don't even give you the whole 411 on celexa

Lois

If you put anything that has a link or mention a book / author etc your post will be moderated as they think you're advertising.  I've had many posts moderated and deleted ....... only trying to help people though.  Ah well.

 

I just wrote.dog...lol

When I was ill I had nothing and nobody to talk to - there were no forums, and in fact the internet hadn't been invented   I got all my help from books yet I longed to talk to someone like me ...... though I didn't know there would be anyone - never envisaged one person would be going through the same.  It was very frightening.

Thank goodness for technology.

Hallelujah

Oh such a rude word haha 🐕🐩

 

LMFAO

I didn't mean to type the f...but is so funny my mom says the same...lol

Makes even funnier lol 

The both of you are so funny 😁

Do you two live near each other?

Lois, your post from 20 hours ago just came up now..  DOG 🐶 😂.

Was he or she the best doggie???   Mine is.  That has to be the best or one of the best breeds.  I couldn't love Buster any more than I do.  I hope you will have a good day.  

Do you live near Kate?

Yes she was awesome... the best.no I don't live near Kate .wish I did.how is Brook today?

It's almost 7am here and he should be getting up very soon.  I'm really devastated.  He is showing signs of getting more seizures this wknd.  If he does, this will set back his recovery back about a year.   This is the one thing that gives him the WORST anxiety and when he got that hit on his head Sep 9th, well that pretty much was a death sentence as far as recovery.   I try can't take much more of this.  I feel like everything I've done was for nothing.  And my heart brakes so badly for Brooks having to feel all that he feels.  All of this is so scary to him..

How are you?

Hi K and all

Need some motivation here if you can help .

Now been on 20mg cit for 16 weeks , upped three weeks ago to 25mg , I started to feel a bit better at 8-9 weeks and went back to work , three weeks ago started feeling bad again so that’s when added another 5 mg , I’m feeling all over the place , anxiety, foggy head , no apitite , low mood and still waking really early and can’t get back to sleep.

Do you think the extra 5mg has still not settled and has increased my anxiety? 

I go on holiday on Sunday for two weeks and I’m freaking out about it , almost like I don’t want to go but I am going .

Agh it’s so frustrating cos I just want to feel well 😩 any tips ? Should I stop the 5mg and take Diazapan instead ? Or will the 5mg settle down soon ?

Help ! 😂 

Matt 

Iam fine ..had a couple of rough anxiety days ..but now resolve...wow I don't have a clue about seizures...but I know it must be devastating...I'm sure it wrecks havoc on his anxiety recovery....

Hello Matt...I know for my early days of celexa ... benzos where my friends... without them I couldn't travel anywhere...take care.. hopefully Kate has answer...

Well I'm glad ur doing better 😁.  

I do feel like I'm back to square one with his recovery, even though I'm really not.   What this did was make his progress stop.

Don't think the progress is stopping.. because is not..it may seem like it.. but trust me ...I felt like that so many times...

He has lost so much weight.  I got that upsetting email from his teacher.  They are very concerned because he's a walking skeleton.

Is there something the doc .can prescribe for appetite..I know when my sister children weren't eating.dc.prescribe a liquid that gave them appetite.

It's not so much a loss of appetite, it his anxiety got so bad that he can't swallow.  

He wants to eat. He tries to eat so bad and gets frustrated.  

When is this severe anxiety going to stop???

Oh yes I know that feeling too well.i had gag reflex for just looking at food..that lasted a few months..that horrendous anxiety cause it..along with dry esophagus... awful...😔

Yep!!!!

But it is now 5 months.. geez this has to stop soon. 

Yes.. remember it took me 8months...Kate 6months

You had it this severe for 8 months?

Around the 5month mark pretty bad...but the zanex..would take me out of my funk.i know you can't give him a benzo..but a half of a 0.25 it's all I needed..which is so low .but it work..

I know everybody is different.  But I read what everyone here posts.  I feel that Brooks is the worst case right now.  He started Feb 27th, 7 months ago..  which feels like a lifetime!  

Then he started this dose May 1st

I say he may be one of the few .. Which will take longer...

I wish I knew how long this torture will take to let up.  He's up to 7 Benadryl a day 😢

JoJo.because of his autism and seizures.his recovery will be different..I'm not a DC.but 7 benedryl.is a bit much .don't you think?

The max is 12. This is spread out thru the day.   Two weeks ago he was much better and only had 4 during the day.  But he's been in this backwards spell for the last 2 weeks

I call it the funky funk..from second/minutes/hours/days/weeks/months ...then they start desapating..

Because they work so slowwwww..it's hard to tell if there working.i remember one of my worst side effects was visual snow. I thought that would never go away but it did...I know me saying to you be Patience is probably irrelevant.because we are not Brook..but let's pray...

In his teachers last email just now, she stated ..

It seems that things are getting better, he's been better, no issues with him acting out.  I have to tell you before the Celexa I was getting bad news often.  

It's been 3 weeks back at school, and it's been really good. It's the eating that's been really bad.  I can't make him eat.  Can't force food.

I know the feeling ...there has to be some food cravings he desires..ice cream candy cookies etc.i feel for you...

If the teachers state that in email.thats progress...so just hold on to those moments .

I only ever took 20mg.  I started noticing changes around 3-4 months, which is about the time you've been on meds.  It took a few more months for me to feel really well.

Yes it could be the extra 5mg that's causing these side effects - they can take a few weeks to settle.  However, whatever dose you're on you will go through the ups and downs - seems you can't avoid it.

Freaking out it the worst thing to do.  You can't hurry recovery - it'll happen in its own time.  You have to ride the ups and downs with as much calm as you can - let them be there.  Its your reaction to side effects / symptoms that matter ...... freaking out causes tension which anxiety likes to thrive on.  Staying calm (as if you don't care) helps the anxiety to fade (over time).

If you try and make yourself better by Sunday, then it'll surely won't happen.  Letting the feelings be there, go with them, take them with you on holiday and bring them back.  If you expect them to be there then they'll probably not feel as bad.

Remember, wherever you're going there'l always an escape route - you can come home, you can take yourself off somewhere quiet .......

If you stop the 5mg it probably won't make a difference by Sunday - and you may have withdrawal effects.  I'd stay on that for now,

Its usually anticipatory anxiety thats the worse - we think of 'what if' all the time, when in fact when you're actually there its not that bad.  Its the build up we freak out about.  Its not the situation, but the anxiety you fear.

 

My son 9 months too

Yes Kate ..I forgot...I have a friend that took Prozac and it took him one year.to finally say I feel normal..

Lois and Kate, if u don't hear back from me, it's because I've been having problems opening up this site.  

Anyway, i am really happy to report that his anxiety is decreased today 🙏. He is currently eating tomatos, and I can see him eating dinner ? .

He asked me to take him to Target!  Hell yeah!!!  If he still feels good after dinner, it's Target 😁

Yes that's great...I'm having issues with this website also.i have to keep erasing the cache.to open website..have fun take care

I can't open any links to any messages so had to find an old one to get here.

K 

Hi guys

Me to can’t get any link from my emails so having to go to the main site.

Just had my spray tan for my holiday tomorrow 👍 tool a Diazipan last night so slept for 6 hours 👍 anxious about being away from home but determined to go and try to relax.

Thanks all for posting lots over the last few days it’s kind of been a life line for me 😁 

Matt 

Me again !

Spray tan at my age , I’m 52 and so pale it makes me feel a bit more confident on holiday having a bit of colour!

Had to smile the lady who does the tan said wow you’ve lost like ads of weight how did you do it , all said actually I’m suffering really bad with anxiety and she said well anyway to lose weight is a positive! If only people knew what it’s like to have this condition they would never say that 😂 is rather big bigger but happy 😃 

Matt 

Yes matt.thats my motto.lol

Had to get here via another email message ..... messages won't open.  I'll report it soon if it doesn't change.

Glad the Diazepam helped you sleep well.  I know the anxiety will seem bad, but it really is best to try and relax and go with it (I know how hard that is too).

Spray tan ooooooh - getting ready for the sun   Yes anxiety certainly has that small 'bonus'   i.e. keeping us from big appetites ........ but its not at all pleasant is it.  I know which I'd prefer.

Enjoy your holiday - go get that sun   xx

Yes Kate this website problem has been like that since yesterday..hope they fix it..it's annoying scrolling down to read or send..

Hi lois

Hope I get my appetite back on holiday , I’d like to enjoy food again 👍

Matt 

Oh you will plus some...been there done that .have fun on holiday...

Hope so , if this crappy anxiety subside’s I’ll eat anything and everything 😂

Trust me it will subside..it's just so slow.working but you will eat again..oink...lol

😂😂 eat my way back into my clothes .

Take care all of you , I’ll check in whilst I’m away and thanks for the support it’s been amazing 😉 

Matt, we've never chatted.  But I read everything everyone posts on here.  Kate and Lois have been my life savor!!

My son is on this and suffering for 5 months with side effects.he went from 130 to 108 lbs.😢

I'm finding it hard to find these posts.  Luckily still have some 'good' ones in the trash which I use then scroll down to.  Can't get to any new ones though from other people. 

Ditto...😔

I can't either.  That's why I didn't bother posting anything.   Nobody will read it.  Wtf??  What can we do about this?  I need the both of you for support. Isn't that this forum is for??  Luckily I kept an open page on my iPhone in safari. If not,I could never get in here. 

His 5 month update.  Anxiety still severe.  Gasping for air.  Really painful and sad to watch.  😢

I've just reported it - hopefully they'll sort it soon.  

Your poor son   - its very painful to watch your child, I know.  I imagine when he has these peaks of anxiety he's just responding by panicking about them instead of understanding about letting them be there, relax towards them and knowing they will pass.  The meds will ease the anxiety over time, but its this period he's struggling with at the moment.

Private messaging email links work fine by the way - its just the public posts.

 

Hi Jojo and Lois

The Patient Team just mailed me to say they're having technical issues with their forums and are working to fix the problem, and hope to have it up and running as soon as possible.

Fingers crossed it won't be long 

Good morning Kate.  Luckily I never closed one of our chats in my internet in my phone.  I just open it and hit refresh and I get all new posts. 

That switch flipped on for him about 5:20pm yesterday.  He didn't stop eating from that moment until he went to bed.  But he was severe until then.  So severe that he looked like borderline crazy..  my entire wknd was me standing next to him, not even able to sit down.  He was always on the move, all over the place.   

Hi K and all

Well I’m here in Spain on holiday , had to take Diazipan just to get here ! Went for a walk today and felt really anxious so came back to the hotel and haven’t left the room didn’t go out last night either 😩 what can I do if anything to try and enjoy this holiday ? My husband is great but it’s his holiday to and I don’t want to spoil it for him , we meet his family over here every year and I don’t want to meet up with them , it’s really getting me down that I can’t be stronger and push through this nightmare 😩

Any advice would be welcomed 

Matt 

Hello JoJo and Kate .. website working now!

Hi Matt

Firstly, well done for getting to Spain - huge achievement.  

Ok this is easy for me to say as I'm not in the situation, but for instance, when on your walk and you felt really anxious, the best to deal with it is to 'stay the course' ..... as relaxed as you can.  You won't feel great, but this is THE way to overcome anxiety (as well as these meds).  I know its not comfortable feeling like that, but nothing will actually happen to you xx.

Trying to get over it and push through isn't the way to go.  You can't force recovery - that just means tension, and anxiety likes tension.  Try and go with the feelings as best you can - let them be there, they can't hurt you, let go of the grip on your stomach, stop clenching the jaw (we usually do when battling anxiety).  By going with it and carrying is telling your body its ok, there's nothing to fear, and your body relearns not to react like it is.

I sent you a link via private messaging some days ago - have a read of the website, it'll really help.  It described what you're feeling and how to deal with it.  You can even email the author and he'll give personal advice too - someone else I chat to has been corresponding with him.

You can't just turn off anxiety - but you can start by relaxing, letting it be etc.  This is called 'facing your fear' but its done as calmly as possible.

Avoiding situations is also not the way - again facing these things calmly.  Its actually our reaction to anxiety that matters most - feeling as you are is being afraid of fear itself, not the situation.  Are the family wanting to meet at dinner?  Is there somewhere you'd feel more comfortable meeting up with them - the beach, a cafe, your hotel?  Can you do it on your terms?  Can you meet only a couple of them at a time?  However if you're finding it really way too much then its ok to not want to meet people sometimes - maybe explain to your husbands family you're not very well and you're unsure if you feel up to seeing them?  Its not worth beating yourself up about it xx.

You'd also be surprised to know that many around you, family, friends or people in the street - someone just passing you is going through exactly the same as you.  It wasn't until I opened up more to friends and family did I discover how many around me had the same.  You're not alone xx.

But .... you've done so well by getting to Spain.

Maybe spend your quiet times reading the web link - I can't praise this enough.

K x

Aye 

Hi K

Thanks for that , all makes sense of course it’s just getting it into my head !

I’m gonna get ready to go for dinner and walk into town to meet the family , they are really nice and know I’m having a crap time , hubby says if it gets to much we’ll head back but to give it a try will hopefully inspire me and make me feel like I tried .

Gonna have to go out as all that ironing he did for me will have been a waste of time 😂

Will check in soon 

Thanks again x

Matt 

Yes matt.i use to be in the same situation as you..but I learn to let it be.which was hard in the beginning..but the best thing was knowing it wasn't going to hurt me.like Kate stated..and with the diazapam.sometimes taking a little chunk from it helps..that way you won't feel so medicated...have fun..your in Spain...😁

Hi Lois

Thanks for replying , I’m gonna really try .

I was going to have two or three largers tonight but to scared to take Diazipan too so one or the other I suppose?

Matt 

From experience I would have one lager..just to be on the safe side..I learn my lesson with alcoholic fluids.just be careful and monitor your intake because trust me drinking one is like drinking two or three.take care.

Thanks Lois 

Anytime....

Hi

Well I had 1 and a half cans of Carling , felt awful so I’ve learnt my lesson ! Coke for the rest of my holiday .

Matt 

Ah - yes mixing alcohol with these meds can affect some people.  Not really a good idea, and if you want to its always best to test the waters first with a tiny amount.  Probably better not to at all though.

How is going out ...... still difficult?

Hi Kate.   Needing your encouragement again.. 

He had a seriously awful night last night.  A situation was created by someone and I tried to diffuse it and my face and back took the brunt.  Can walk too well and one side of my face is badly swollen and black and blued.  

5 months and still the same level of anxiety.  It seems whathas been going on, is he is having more bad days and nights vs. good ones.  Does this mean he's far away from getting better?

Your son did that?  xx

I still can't believe you don't get any support for this.  Its not your sons fault, but the situation he's in.  Poor lad - so confusing for him.  Did he / you used to get help when he was younger?

Its so hard to tell - everyone is completely different, reacts differently to the meds, takes their own time for healing too.  He still seems to be having a mix of good / bad times ..... 5 months, he could be so near - so hard to tell.  It doesn't help that your son doesn't understand what is happening.

I really suggest you also contact the author of that web / book - he's in the UK but helps sufferers all around the world.  Its worth a try.  

Hi K

Still not comfortable about going out would rather stay at the hotel , I just can’t wait to feel normal again this is so draining and so not me 😩

What a horrible long slog this is , my heart goes out to all sufferers.

Matt 

Kate...  he also was restrained twice so far in school today.  Something they haven't had to do in MONTHS!

Why do I feel he is going backwards?

Im so sorry your feeling yucky.it took me 8months to feel the benefits...and I'm only on 10milligrams.

That's the nature of this medicine for alot of patients.including me.i never understood the term two steps forward three steps back.but now I do.

Yep it’s a long process 😩

Snip a little tiny bit of the diazapam it won't hurt you...

What?  Why?  At 5 months stepping this far back is just wrong.  I thought it was more like 1 step forward a 1/2 step back.

Do you mean take a bit of the 5mg tablet ? Will it take the edge off and not wipe me out ? 

I have no support at all!!  My boyfriend is constantly giving me negative feedback on this med.  he doesn't believe in meds. 

Life is getting to be more and more alone with this problem.   I keep saying that I wish u and Lois were here.  I need the both of u so much!  I am lucky I have my mom.  

Yes ma'am absolutely.i did that for along time.requested by my phychiatrist..that way you feel functional not wipe out.

Hi Lois

Wow I’ll give that a try tomorrow, for tonight I’m gonna get ready and go food food which is a positive.

Thanks 🙏 

Matt 

Anytime

Wow JoJo.not receiving support from live in love ones.must be horrible.

Hi K and all

Agh! Morning anxiety is the pits! Why why was ok calm last night and now feel like this it’s just not fair 😩

Done my meditation and going for a walk but why is the morning so so bad ?

Help!

Matt 

Hi Matt

Hey don't worry about that at all (famous last words   - its perfectly normal for that to happen.  That's how my recovery started - my evenings started to slowly get calmer yet every morning I'd wake with horrendous anxiety.  Again when the evening came, I felt calmer.  The early morning anxiety (on waking) was the last symptom to disappear for me.  I had it right through recovery, though I began to understand what was happening and knew it would disappear later in the day.  The calm evenings slowly crept more into my day, so that afternoons became calmer, and finally mornings ....... however I still woke every day full of anxiety.  One day at 6 months I woke up and the anxiety had gone.

Bad mornings might be with you for a while yet - and though they feel awful, try to accept its part of recovery and it will go - one day.  

Somebody posted on here why we get them - I can't remember exactly but it was something to do with cortisone (maybe) builds up during sleep / relaxing so on waking its at its peak.  That's not exactly how it was described, but I'll try and find the post again for you.

Also when you're asleep your body is deeply relaxed, and on waking I think you subconsciously remember you have another day to get through and your body automatically responds with anxiety.  The anxiety state has been with you a while and therefore your body has developed a habit.  This will go as you recover.

For now just try to treat it as part of the illness / condition / recovery - just let it be there, get up, take a walk, shower or whatever and just get on with your day.

The 'bite' is always worst first thing.  Remember though that this isn't an indication of how the rest of the day will be.

It will go.

K x

 

Hi K

I would pay good money just to have you post something like that to me everyday! What you say is so reassuring every time and I read and read it again so I absurb it and it seems bjs in , you have such an amazing way with your words of encouragement and o thank you so much for that.

I had an ok day today , I split a 5mg tablet of Diazipan in half and took that , it took the tension off a bit and I was able to have a really long walk and lunch ! Very hot here in Spain today so feeling wiped out now lol , will have a night in front off the telly and see what tomorrow brings.

Family here on holiday have text me to say not to worry about them and we’ll catch up when I’m ready and send their love which is great as it’s taken the pressure off meeting up at night , will find them on the beach tomorrow maybe to say hi.

We like be to wake up tomorrow totally normal but I know that’s not going to happen yet but I know I will get there it’s just a matter of time .

Thanks again a million for your words of wisdom ❤️

Matt x 

Yes Kate is the best...I'm glad your bit of diazapam seems to work...

Hi Lois

Yes it did and I was able to have a pleasant morning/afternoon, I even chatted to people when we stopped at a sea front bar to have a coke , feel wiped out now so hubby going for a few beers with family I’m gonna chill in front of the telly.

Roll on the good days 👍

Matt 

And if I may chime in.. I would have backed off this drug for my son 2 1/2 months ago when his doctor said this drug isn't working on him if it wasn't for Kate and Lois.

I did the same thing.  I would print out every comment, read and reread it over and over again every bit of advice that was given to me.  

Hi Jojo

Yes it’s great to have their knowledge and support, seems like this anxiety and crap feeling will never go at times then you read these words and it motivates you to push on and keep thinking positive that it will get better , just takes time and not the instant relief we think should happen .

This forum is a life line for me and others , not sure where I would turn to without it, even my councillor can’t give Cit advice as she has no experience of it so it’s crucial for me to read advice from people with the same experiences,

Matt x 

Kate and Lois, I need your help... again.  This has been the worst week for him!  Is this normal at this point?  

He was having decent evenings, and this week he went backwards.  Been worse than ever these last 3 days, but only in the evenings.  What gives?  Now I'm even more confused...

JoJo.for me the days cycle from mornings to evening's.all though my evenings where better.i was still cycling with anxiety for eight months.

Were your evening always better, or the majority of the time better?

Eight months struggling bad?  

I haven't seen him like this in the evenings in 2 months.  So when he was at the 3 month mark he did this.  

Yes I was cycling thru anxiety . Especially at the five month mark.my majority of my evenings became better after 8months..with the occasional blip here and there still.

This is killing me.  I don't know how

Much more I can take.  His evening had been good until 3 days ago.  

He handles his anxiety better during the day than the evenings.  Don't know why.  I can only think he was feeling really good and backwards he goes and angry and frustrated.  This will always be my problem.  I have to guess all the time.

Those moments will ease.if he is cycling like you say he is.my phychiatrist always said hang on.that means the meds are working..

When you say cycling do you mean his body is going into cycles?  Like the evening being good is a cycle and now his daytime was good and the evenings have been bad?  Is this cycling?

Yes ma'am.

🙏

Gosh there's so many conversations on here I'm not sure where I am lol   

Sorry you haven't got much support - its often the nature of the game with anxiety.  People don't understand it, think its just a mild thing .......  and sufferers also don't talk about it either for fear of ridicule.

Exercise is good for anxiety - it helps burn off the excess adrenaline.  Is your son able to do physical things i.e. a static bike ???  Is he able to get free / discounted via the doctors to a gym membership?  I always see a variety of people at the gym I belong to, from elderly, disabled, people recovering from surgery etc to the gym bunnies.  They are referred there by their doctors for recuperation.  Many people are also referred for depression etc as its a known fact exercise helps.

 

Good morning Kate.  I was reading off another forum and a lot of people had their side effects go away after the 2nd month..

This is so not fair.  I'm happy for those people, but I want my son to feel that same happiness too.  He felt great for the first 2 weeks on this then the side effects hit him bad.  It seems he's losing his patience and becoming really frustrated feeling like this.  So he went from having good evenings to having good days, really bad evenings.  😢

I think you gotta consider your son's circumstances..from every forum that I read I don't think most are autistic.if you see and feel his getting worst.maybe is time to lower dose.because you certainly don't want to raise it.could be he is sensitive to medication.its alot going on at one time for you and your son.i certainly was sensitive to celexa.

I was is sensitive to a higher dose for any medicine..

So now I'm back to deciding whether to lower it or not.   I never think that as an option until you mention it to me.  

I agree he has a lot against him being autistic and not understanding or knowing what is happening and why.  

He's 5 months into 20mgs and I have gotten so far with him, but on the flip side I truly don't know how much more any of us can take putting up with this panic he still gets.  Ur right, he is cycling.  Another thing I don't understand.  

I don't know what to do.  I just read on diff forums how others side effects were gone after 8 weeks...  just like what his doctor told me 8 weeks.  

My general practitioner said 8weeks..go figure.my phychiatrist said many many months very slow working.i even ask for And updose like six months ago.because I was feeling icky.and she said no.and your telling me he never suffered from panic before?

The key to these ssris is the tolarable dosage.especialy in a autistic child.from what I have researched.

No.  He got PTSD from trauma 1 1/2 years ago.  Never had panic before.  With the PTSD he got anxiety.  His anxiety was diff.  He attacked because he was in fear.   Attacked everyone.  The smallest noise freaked him out.  We used to fly drones on top of his head and he'd laugh.  Now the sound of a water bottle cracking makes him want to attack.   He didn't have an anxiety face which is why it took so long to get diagnosed.  Once the facts were put together it was figured out.  He nor us can go through life with the sound fear he got overnight.  

I'm doing this to rid or lessen him of this so he can start living life again.  

I do believe it is working because the first 2 weeks were amazing!!!  We were going out again.  Then the side effects came and life stopped.  I feel his bad moments have gotten worse..  or is it he just is tired of feeling bad and is acting out.  He had a bad last 3 days.  

Lois, did you see  my previous response?  

So he is having a bad morning which is hasn't had before.  Is this cycling?  He's all over the place this week.   

You told me you were cycling bad at your 5 month mark.  Not when did it go away...  but how far past months did the cycling ease up?