Feel like I am going crazy!!

Read katecogs post...u will definitely understand how this med works..she has the most logical explanations.....

Where can we find katecogs post?

On the search box ...on top of this forum just type katecogs .

Awww thanks Lois 

Hi Lattifa and Pamela

Yes when you increase the medicine you will feel anxiety again - every increase will heightened the anxiety, but this is temporary and will ease off as your body adjusts to the doseage.

Pamela - doing yoga, breathing exercises, meditation etc won't stop the anxiety in its tracks.  These methods are absolutely brilliant for anxiety, but it takes more than one session to ease anxiety.  Sometimes people rush about frantically trying to rid themselves of this feeling, and end up getting frustrated and adding yet more anxiety onto the anxiety they already have.

You can't stop anxiety dead.  It takes a long time for this to ease, so acceptance and understaning this helps to not have false hope.  You can ease a panic attack but not that constant anxious feeling.

But that doesn't mean it won't go ...... it will.  Its our attitude towards anxiety that keeps us in this fear / anxiety / fear loop.  Because you fear it - you produce it (and all its side effects).  Your body's natural instict is to run from it.

There's a great website and book I'm always passing on to people which talks more about this and how to pass through anxiety instead of fleeing it which in time your body relearns how to become unafraid.  It was written by a man who had suffered for 10 years.

Understanding this method plus medicaton is how I recovered.

I can send you the link.

K x

 

Well said again Kate.....

Can you tell me the name of the book plz? X

I'll private message it to you Lattifa as links and book titles aren't allowed to be posted on here (they'll get deleted).

K x

 

Hi, maybe you can answer this question for me.  I read everyone's experieces on the Celexa.  I get it that it gets worse before it gets better.  My son is autistic and cannot tell me how he's feeling or how bad.  All I have is to go by his actions.  His doctor told me that everyone has their 'sweet spot'.  He suffers from seizures and has severe PTSD.  His anxiety is so bad he can easily never leave the house.  Before the trauma we used to go everywhere in the world, this has been going on for a year now.  When he started 5mgs.. his anxiety immediately started getting better, 10mgs even better, 20mgs ever better...  but still so far from where he needs to be.  So his doctor put him on 30mgs and his seizures got really bad, so bad he needed to go back down to 20mgs.  He tried something else and it made his seizures even worse so he got off of this other med and went up to 25mgs of Celexa.  It was the best 5 days he's had in a long time..  then day 6, 7 and 8 he's had horrific anxiety.  Unfortunately his doctor is on vacation at this present time and I am hoping to get opinions here.  On day 6 of the 5mg increase, would it most likely be the side effect of getting worse before it gets better or it aggrivating his seizure activity?  He has never experienced any side effect being on 5mgs or 10mgs or 20mgs.  This is why I have to lean more towards the seizure thing. 

Any and all opinions are welcomed. 

Thank you...

Hi jojo

When did your son start taking the medication?

Sometimes people do feel better at first and then the side effects kick in along with the heightened anxiety - and some people get side effects from the first tablet they take.  Everyone reacts differently.

I'm assuming though your son has been on the meds 8 days (or is this just the increase)?  If only being on the meds 8 days I'm thinking that the side effects have just kicked in after the 'honeymoon' period which a some people do experience.

If he's been 8 days only on the increase of 25mg then it could be that some people find they can't take a higher dose which could be 40mg, 30mg etc so it could be that 25mg might be that little too much?  

The side effects do wear off though it can take a little while - so it might be worth him hanging on a little while to see if they pass.

So yes, it could well be the anxiety being heightened at the moment.

K x

 

He's been on it for about 2-3 months now. 

How many different dosage changes...in the 2 to3 months???

I replied back with all these details and my internet went down.  He's also on Zypexa 20mgs.  When he went up to 25mgs and then 30mgs it backfired on him.  He's back down to 20mgs of Zyprexa.  It's almost impossible to know what the right decision is to make when the side effects on Celexa are so all over the place. 

At the present time he's still sleeping.  His anxiety was so bad last night he couldn't fall asleep until late.  This poor kid, it brakes my heart.  I'm going back down to 20mgs today.  If 20mgs IS his sweet spot like the doctor likes to call it, should he start feeling better tomorrow?

And thank you very much for replying back to me so quickly

Joann

5mg to 10mgs to 20mgs to 30mgs ...  REALLY BAD REACTION..  back to 20mgs.  All was good then up to 25mgs and bad again. 

You have to understand these meds take along time to work ...it took me months not weeks..I feel for your Little one...20mill. was too much for me ... I'm on 10mill.for 14months now...but everyone is different..n I know from experience celexa cause me horrible anxiety etc.but I preservere...take care

Thanks..  I'm thinking 20mgs is it for him.  When you upped your dose what were you feeling that you knew it was too much?

Hi jojo

Forgot to say that I was only ever on 20mg maximum, and after I recovered I reduced to 10mg and stayed on that for years.

A bigger dose doesn't mean you'll recover any quicker than if you were taking a small dose, and you can't hurry recovery up either with taking a large dose.

When you find the dose that suits you then stick with it.  

2-3 months I'd say is still fairly early on the meds.  If he was fine on the 20mg and isn't yet feeling 100% (but is feeling some benefit) then the meds and that dose still have more to unveil for him.  Usually you start feeling better (a lot of people often have dips too) but you haven't yet peaked at the full recovery, and it isn't a larger dose that will do this but its time.  Though it took me 6 months to recover I still further improved after this time too.

Sounds like the 20mg will be fine for him and you now have to play the waiting game.

How old is your son by the way?

K x

I like your reply.  Very smart and knowledgable.  This is why I came here right to the source.  Doctors have only so much knowledge but until you actually take the med, you don't know. 

Everything you said made total sense.  His doctor kept trying to make his anxiety less and less by trying other things.  I am glad I decided to put him back down to 20 today.  How long do you think it'll take to get that extra 5mgs out of his system to hopefully get him back down to where he was before going to 25mgs? 

I will be asking the pharmacist this, but would you know if I can give him a Benedryl to help relax him if he's still suffering really bad with anxiety today?

I was feeling nauseous /high anxiety/visual disturbances/palpitations/insomnia/ tiredness.... irritable...

That's pretty much spot on what he's feeling.  How long did it take for your body to get rid of that extra dosage and feel better again?

It took me 8weeks to get rid of that xtra dose drama...the ten milligrams took me 8 months to feel like my self again...I push thru...after trying 5 different ssri...my recovery is about as similar to katecogs... little by little every month I feel better n better ..in the beginning my anxiety was high in the morning after noon manegable...also my headaches on twenty where horrible...hope this helps..

Ok that is really scary.  You didn't feel any better at all going down until that 8 month?  Then how did you know it was too much for you?

When he went from 30mgs to 20mgs, he was on that higher dose for a week and it took a few days, I think about 2 or 3 days to get back down. 

I absolutely felt better as soon as I reduced dosage ...but it was a gradual feeling little by little those horrendous feelings started to fade ....it wasn't a instant relief ...but gradual...slowly ...I never thought I would get better ..but reading katecogs logical explanations...I kept on...it took long but the difference in recovery was dramatic for me....to compare how I was feeling without celexa...

Ok I feel better now.  Because it seemed like to me he was better after 2-3 days.  That was dropping 10mgs.  He's having a very bad day today.  Is there any hope by the end of this day of his anxiety getting better?  I dropped that 5mgs starting today.

How did I know it was too high ..I told my phychiatrist all of the horrendous feelings ..and she said let's try 10milligrams...after trying 5 different ssri...I said why not..and it work...she didn't want to up dosage because I'm sensitive to meds..so we went down...

I was thinking about giving him a Benedryl to help him calm down.  Did you try that?

No the antihistamine didn't agree with me...dc.. prescribed alprozalom..a benzo...only for those irritable days ...a very low dosage....for one week only...but that brought alot of relief...

That made his seizures worse.  He can't take those.  Did you try Benadryl first?

Sorry I seem to have missed this post from you and answered but didn't make any reference to this.

I don't know of Zypexa.  You do have to be careful of taking lots of meds that work on the brain because they all give different side effects which can make the body feel confused.

Yes the Celexa side effects can be very varied - day by day, person to person too.  There isn't a 'one meds fits all' sadly.

I also wanted to add that my son had a complete melt down 3 years ago when he was 20 and I watched him go through this whole anxiety thing plus taking SSRI's too.  It broke my heart too - it was hard enough suffering myself many years ago but watching my child go through it too was even worse.  My son recovered too and is back to being a happy young man again.

If 20mg is the dose for him, then no I doubt he'd start feeling well tomorrow.  These meds are slow working and when starting out on these them they often take about 2-3 months before people start noticing anything, but you did say your son felt better immediately he started taking them so he may well start feeling well real soon.  Its hard to say, because like the variantion on side effect with each person, so to it recovery.

K x

 

You and your son both are so very lucky you found what works for you.  It's so crazy learning the ins and outs of all of these meds.  

It is the worst feeling in the world watching your child struggling just to survive a day..  it's stinks.  

It was a Sunday and that extra 10mgs make his seizures bad.  I lowered h on Monday, the next day was really rough  and by Thursday he was better.   I can only hope...  

I want to thank you with all of my heart for giving me this help and advice that I needed.  I can't get this from a doctor.  They only know what's on paper.  I want to thank Lois too for her advice.   I needed to find out the truth about this med.  

?

Yes thats true - doctors are General Practitioners and are 'jack of all trades - masters of none' I suppose, though some do have special interests in certain areas.  My first doctor was great and helped me so much, always saying the right thing when I needed it and he saw me at my worst time.  After many years he retired and when I went to see the new doctor (about something completely unrelated to anxiety), the first thing he said to me was 'isn't it about time you came off these tablets'?  I asked if he knew me, if he knew of my history and had he read my notes.  No.  So I said if he cared to read them I might discuss it him someday, and in the meantime I've come about something else.

Anyway .....

Your sons doctors can't make the anxiety less - if there was something then we'd have all been taking it.  He can however prescribe something that will maybe help take the edge off the anxiety, but sometimes too many different types of pills thrown at you along with the SSRI's can make you feel worse.

I'm not sure how long it will take for the extra 5mg to leave his system - sometimes the meds leave the body but the symptoms linger, but I really doubt that will happen for your son.  I'd think a week or maybe a bit longer ... though again it could be less than that.

I'm not sure about Benedryl - isn't that for allergies?  I've always taken anti-allergy meds during the summer (hayfever) and they're fine with Celexa, but its always best to check with the pharmacist.  Someone I was chatting to last week said they were having a bad time with anxiety / panic and had taken some anti-histamine for an allergy or cold or something, and it had immediately quietened his anxiety.  I hadn't heard of that before - but interesting.

Relaxing is really good to help anxiety.  An anxious body likes tension, so relaxing the body is best.

K x

Iam so grateful I was able to help...katecogs should write a book...take care

Thanks - we are very lucky to have found meds that worked.  I was ill for 16 years before being put onto these and within 6 months I'd recovered.  My son took 9 months and was on a different SSRI to me, but they do the same job and give similar side effects.  It was an easy ride at all - but I'm now glad I had the experience of anxiety and these meds as was able to help my son when he needed it.

Yes, it is truly the worst thing watching your child struggle.  I had come off my meds a year before my son was ill and had to restart them because I didn't want to become ill again as needed to be well for him.  I felt very helpless at the time ..... but we came through it.  He gave us a lovely Christmas card the year he recovered with the most beautiful thank you Mum & Dad message inside that still makes me teary when I read it.

I think at the end of the day you know your own body (and that of your own child) and you can see (or feel) what dose suits best.  A doctor can advise and prescribe, but as you say, unless they've suffered or taken these meds then they really don't know how it feels.

Aww thanks jojo - am glad I could help and let us know if there's anything else you need to know too.

Wishing your son well and hope the meds help him as they did my son too.

K x

 

Haha ..... you're not the first to say that Lois   

K x

 

K, Yes I called the pharmacist yesterday but the pharmacy was too busy to talk to somebody.  I will call early this morning to see if the meds can be mixed with Benedryl.  He is also on medical marijuana and I've been giving him more than he'd normally get and he still isn't able to relax.  His anxiety has been so bad since Sunday.  Yesterday was so bad he hadn't eaten anything all day and all night.  He couldn't even relax enough to pee!! 

So your anxiety got better just sticking with that one med and not adding anything else?  Did you go to therapy also?  It's so much better when a person can express how they're feeling and what they're gong through. 

Joann

Thanks for your post Kate please could you send me that link xx

Yes the anxiety does calm down over time - its just hell to start with.  Everyone feels it different levels of intensity - my son didn't deal with it well and couldn't work for a while.

My son was also prescribed Mirtazapine which helped take the edge off and helped him to sleep better too.  I just stuck to the meds.

 

Hi Kate,

Could you PM me the web address?

Many thanks

It's been 7 days at the lower dosage and I am so so happy that the worst is over!  On Friday signs of happiness started breaking through.  Words can express how thankful I am for you and for Lois for all the informative information you both, esp you gave me.  I needed the truth on how this med works.  Like I said, can't get that from a doctor.  I could not have gone through this past week as well as I did without you ladies.  Now that I know it takes up to 6 months on the dose that works for him, I won't allow the doctor to prescribe him anything else for a few months, hopefully he won't need anything else.  His doctor wanted to put him on Haldol.  I could never allow that med in him..  Haldol is like Thorazine.  One of those really old meds that used to be given in pysch wards when many many years ago they would put everyone mentally challenged in this mental hospital and dope them up to be zombies.  I get so p****d!!!  His anxiety turns into violence.  So duh..  get rid of the anxiety and there's no violence.  Instead these idiots think oh he's violent so give him something to make him a zombie.  That's treating the symptom and NOT the cause.  Treat the cause which is the anxiety and the violence is gone.  

<3 

That's wonderful to hear...thorizine made my mother n law unbearable...haldol drove a friend of mine to a walking zombie ...so nice to hear that Kate and I where helpful...

For this entire last week, I was quoting everything you girls have been telling me.  That got me through this.  I felt like I was losing my son.  The doctor is close to giving up on him..  because he doesn't know what you ladies know.  Which is the truth.  If you both were here, I'd give your both a great big hug...  a week ago I literally tried getting him admitted into a facility.   They wouldn't take him because of his seizures.   People around me tried convincing me to put him in a hospital so they can strap him down and drug him into a zombie.  This is how important this forum was to me!  This is how life changing and life saving you both were to me!  Now my beautiful son is home with me where he will stay because he is and will continue to get better.  We had a very good wknd.  Unfortunately that extra 5 mgs did cause him a seizure.  So it really was bad for him seizure wise and mentally.  

xx

Hey, I'm so pleased to hear that!!  Yes it can take many months and its all different for each individual.  He may have blips throughout this time too whereby he'll feel as if he's gone back to the beginning - that is absolutely normal and seems the way the meds work .... so just be prepared for these dips.  They do pass and doesn't mean the meds aren't working or you need a bigger dose.  Doesn't matter what dose you take you will get these dips.

Mmmm that doesn't sound a good medicine - yes I remember seeing films where people were walking around like zombies.  Doctors are too quick to prescribe all sorts.

Anxiety comes with many side effects - thoughts, racing mind, aches and pains, anger, being over emotional ........ and as you say, treat the anxiety and these side effects will go too.

High five Lois 

K x

Doctors mean well of course, and they can have all the experience ever - but actually taking these meds is a whole new ball game.  Might be a good idea to point that doctor towards this website too 

Would those people have put their child into a hospital too?  You'd do anything for your child to keep them from harm, and would even lay down in the road for them.

Awww - a virtual hug is a good as a real hug.  Only too glad to have helped, and I'm so glad your son is back home with his mum   Enjoy every minute xx.

He could always have the 5mg cut down further into 2.5mg (though crushed).  Of course remember its not always a higher dose that helps you recover, but its giving the dose you're on lots and lots of time.

K x

Each time I take him to the doctor, he'd ask me "is he back where he used to be"..  And I say "no" because he's far from what he used to be like before the trauma.  So he will increase the dose or adding another med into the mix.  It's all trial and error, but doing what he suggested messed him up SO BAD!!  It's been contant going backwards for the last 4 weeks.  Without the knowledge that you and Lois gave me, I would have kept listening to him and wonder "what the heck is going on with my kid!!".  What I did was cancel his next appointment and rescheduled it for a month from today.  It will give him some more time to get stabalized...  that's my hope anyway. 

Yes I get tired of what I say falling on deaf ears!  Treat what is wrong with him and not the symptom.  Way way too many people say "oh he's violent..  maybe it's time he gets put in a home".  WTF????  That's what people do?  Just stick a kid who used to be so full of life, be the life of the party into a home because it's "too much work" trying to figure out how to make him better?  Or I get told "he doesn't have anxiety".  They see violence and without knowing anything about him or what he went through, every doctor said the same thing.  He is a teenager and he turned violent.  Well all I am saying is what I know...  Since he started the Celexa, the violence is gone.  The only time he has gotten the violence back is when the doctor went from 20mgs to 30mgs and back down, then Valium made him totally nuts like out of his mind nuts, then the Celexa increase again from 20mgs to 25mgs and back down. 

And once again, thank you for this valuable information.  Today he's got some anxiety again.  Normally I would have thought that it's not working..  but with your information it's just part of the process. 

<3

Yes that's exactly how the gp...had me with different meds weeks after weeks...I was a horrible guinea pig..until I saw a phychiatrist and we both agreed I was very sensitive to meds...and reading katecogs ..I completely made a positive return to my self...after suffering from withdrawal effects from the other ssris..thinking I was going crazy.. because gp.stated that all those physical symptoms weren't from the ssris...go figure...I'm happy to hear you are putting your foot down for your son...take care

Hi five Kate... everything you explained in this forum has been right on the money...not one thing different.maybe we are long lost fraternal twins..lol

It's comforting knowing that you both are right here for me anytime. 

This whole thing of anxiety and what comes with that can be so frightening and feeling vulnurable to anything is not a good feeling at all. 

With his anxiety came an issue with sounds.  He never had that before the anxiety.  Has anyone here ever experienced this?  He won't go outside in fear of hearing a bird, or a cricket or a dog.  And we have dogs!  We have 3 dogs and 1 cat and it hasn't been easy living with this sound sensitivity he now has that he never had before.  I really had hoped that would have gone away or gotten better once he started the Celexa.  Any advice...? 

 

It will go...I have had sensitivity to light. sound .taste.all my senses including smell where so disturbing for me ...I remember my husband talking to me and it was.hurting /bothering my ears.it took I sat six months for those symptoms to subside..I knew it was the celexa .plus ringing in the ears which just started to subside....take care

OMG really??  Lois it does get better?  I wish I had you right next to me to talk to me about this.  I used to take my son to Great Adventure, water rafting, went on vacation, took him everywhere.  Now I can't get him to sit outside!  He won't go.  He runs from the door to the car. 

So I don't do anything but sit tight and wait?  Because being he's autistic, I can't take him to any sound therapy..  I tried and he went nuts and nobody in that industry would take him on as a patient. 

Lois...  how long have you been on Celexa? 

I'm pretty sure it comes from all the changes of meds and dosage changes...at first I couldn't understand why...and I thought I would never recovered from senses sensitivity...but it all went away..I couldn't even go to my friend's house because her Childrens.voices will make my ears feel real strange...it was very annoying but it went away...Thank goodness...

I have been on celexa 14months 10milligrams ...20 was too much for me..take care

Did your anxiety come from a specific event in your life or is / was general anxiety? 

It came from moving from state to state...it started with me moving heavy furniture which cause me to have chest pain which turn into panic attacks/anxiety.thinking I was having heart attack etc.. horrible adrenaline rushes / paresthesia on my head n feet..but after two emergency one brain MRI..torso x-rays..full blood work....it was all anxiety related...all my physical symptoms including high blood pressure and palpitations...all went away with the celexa...it wasn't easy..but I preservere..with the help of my husband. Phychiatrist..and katecogs...I'm feeling a whole lot better...95percent...I would never want to relive those months ever again.take care

Thank you Lois for being so open with your experience.  I know every person's body is different, but you gave me real hope for his recovery.  The sound issue has been going on for 1 year and 4 months.  A prisoner in my own home.  Can't even walk outside to mow the lawn without him panicing. 

I finally have real hope for his recovery with the sounds.  I'll be happy with just "better".

Yes ma'am preservere...all will get better ..baby steps...like Kate says some days it will all seem like his going backwards or meds not working...but is all part of recovery... remember is a slowwwww.process...take care

Haha  ....... lil sis??? lol

 

When you have anxiety, all your senses are heightened, so its not surprising sound is affected too.  So yes, you become super sensitive.

Because this is part of anxiety, it should lessen over time as the anxiety eases.  Everything about anxiety eases one by one, little by little.

 

I'm so grateful you and Lois told me about good days and bad days and days that it may seem the meds aren't working.  He's not having one of his good days today and if you ladies didn't tell me this, I would have thought his meds aren't working anymore.  I just have to breath deep and this shall pass. 

Yuck!!!

Yes JoJo...those days are normal....I know u said you gave him valium before...and I stated doctor gave me zanex for those rough days...they are both benzos...the only difference is valium is long lasting in the system. While zanex is short acting for emergency anxietys....take care...it will pass...

I know u stated that he was zyprexa..on zyprexa u cannot take valium/Prozac/highblood pressure meds/and heart burn medications...take care....

Whoa...  he can't take Valium while on Zyprexa?  Well that doctor who has him on Zyprexa put him on Valium and he pretty much lost his mind!  Everybody wanted to lock him up in a hospital.  Please explain as much as you can..  xx

Yes it can effect how zyprexa works...and valium was one of the meds ..to watch out for...that's what it says in the zyprexa interactions....

Once again, thank you for that info.  I don't understand how his medication management doctor who prescridbed both of these meds did not know about the drug interactions.  And when he had flipped out the doctor just looked at him like he was crazy.  It truly broke my heart.  I really like this doctor too. 

So these backwards days that he will have like today..  do they last long?  Did you ladies bounce back forward pretty quick?

Oops... prescribed

 

They where like yoyos.up and down...but they gradually lesson week by week......is he having trouble sleeping?

When he is suffering..  it takes forever for him to fall asleep.  When he's having a good day, he is happier than a pig in ____ when he lays down on my bed at night.  Ever since the anxiety, he has to fall asleep in my bed.  Then I drag him out and get him in his bed, then I go to sleep

I really hope his bad days don't last too long.

My phychiatrist says when ur cycling thru those up and downs .that means the meds are working...take care

Yes, it always foxes people and not many doctors tell their patients this, and in fact some don't even know.  Those phases can last a few days or longer, but they do pass.  They get less and less as time passes.

Someone told me they'd taken an anti-histamine for an allergy when they were also feeling highly anxious and it calmed them down.  Food for thought ......

 

Been giving my son 1 Benadryl each morning for a week now.  As I see his anxiety get better, I will stop doing this.  It really does help calm him down.  A normal person would fall asleep, but for him it's been taking the edge off, not tired at all..  still full of energy. 

Question to you and Lois...  If I were to take him on vacation for a week, in your experieces, in the long run would that help his anxiety or make it worse?

Lois...  knowing what you've experienced, would I be helping or hurting my son if I take him on vacation somewhere? 

For me my experience was ..I didn't want to go no where all though I try...my safety net was my home...I experience all the anxiety senses issues outside for some strange reason...some times it does help to go outside or vacation...bit been that your son is autistic... emergency situations are better dealt with near your home...take care

Good morning...  I keep reminding myself what you and Kate told me, until the 6 months he can go in and out with the anxiety.  It's so hard to understand that, it just doesn't make sense to me but I go by you and Kate's experience.  Wednesday his anxiety really wasn't that bad, but yesterday...  oh boy!!  I broke down and gave him a Benadryl at 6:30pm and it did nothing.  Then I gave him another one at 8pm and by 9pm he finally ate for the first time all day.  It brakes my heart seeing him suffer this bad.  Is the time frame of 6 months pretty accurate?  And is that 6 months from when a person starts or 6 months from when they reached the dose that works best for them? 

Yes I've heard others have used Benadryl.

Vacation - everyone is different.  Some people feel anxious being away from their normal surroundings, but others like a refreshing change.  When I was ill I still holidayed.

Personally I'd still take your son on vacation - don't stop doing normal family things.  If of course he does feel very anxious you can always come home.

K x

 

Jojo - I wrote something on this some time ago, 'why meds take so long and why you feel so rubbish':

https://patient.info/forums/discuss/reason-meds-take-so-long-and-why-you-feel-rubbish-571394

Everyone is different - some people feel much better before 6 months, and some a bit longer (very few).  The majority of people start feeling better around 3-4 months.  Having said that, though it took me 6 months it wasn't bad all the way through that as it eases by the end of that time.  My son took these meds too and it took him 9 months - but by that time he was already feeling much better.

Your son is already having good days and bad so that's a sure sign the meds are working.  The good days will get more and the bad ones will get less intense and less frequent.

One of the best things to cope with anxiety is to relax towards it - let it be there, don't tense towards it.  Anxiety is just your body's defence to danger ... though of course there isn't any danger, and in fact you become afraid of the anxiety itself which causes more anxiety.

I'll private message you a web link which will explain it more.

K x

 

Well it took me six months...with little bouts of relieve in the evenings.it may take him shorter.. according to katecogs she started noticing a difference at 3months... she recovered on six months..I recovered 8months ..and I'm still recovering...if he is having good days n bad days...that's not a bad thing..as long as his having good days ..not all bad days..take care

Hi Kate.  Just checking in and making sure all is ok and you're doing well.  I think it's possible he turned a corner with this med.  After 2 weeks of suffering..  he is happy today.  Since I'm not the one suffering, I don't know what to do.  Anxiety is the #1 trigger for seizures.. needless to say he's had more in the last 2 weeks than normal.  Should I push him to go out?  He's really will not leave the house!

Hi jojo

Yes I'm doing well thanks 

Hey that good to hear that your son is feeling happy today.  I wouldn't be in too much of a hurry to push him to go out - lots of people like the security and comfort of home, and he'll certainly feel able to go out more as he recovers even more.  Do you have a garden?  Is he ok in the garden or even if you take him out in the car .... small steps?

K x

I agree...Kate....🌹

 xx

 

He won't even sit out in our back yard.  I have a big back yard with a gazebo, BBQ, table and chairs.  The sounds are a trigger for him.  He thinks about the sounds he will hear outside like the birds, the crickets and the dogs..  so he just won't go out.

 

Lois...  when you count the recovery time on this med, was that from the starting point at a lower dosage or the dosage that you're on now?  He started 4 months ago on 5mgs.  He's on 20mgs for about 2 - 2 1/2 months. 

I say from the dosage iam on now...

How are you and your son JoJo...?

It's weird.  The last 2 days he's been waking up way too early and not getting enough sleep.. but he hasn't had anxiety.  I see it coming on his face when he hears a sound, I try hard to distract him.  Doesn't always work.  I hope that sound issue gets better or goes away when the anxiety gets better or goes away!  It's impossible to live like this.  It's the end of the world if he hears a dog bark, play with a toy or their nails when they are walking across the floor.  We have 3 dogs!  You can't imagine.  It's even worse for them.  They can't do anything but just be there.  It's sad.  This is why I really need that sound issue gone better than what it is now. 

I started giving him 2 Benadryl's in the AM on Saturday and it either really helped him, or his anxiety happened to subside at this time.  Thank you Lois for thinking of us

Me, I'm a nervous wreck, just trying to keeping it all together living day by day. 

How are you??

Yes the sound issue did subside for me ..I also remember actually hearing my husband tap his iPhone..it was so annoying..but it dis pass for me took me a about six months for that to. Subside...realizing there was no other ssris.to try ...I fought thru it...take care..and like you .I keep you and your son in my prayers..take care

Awe..  thank you so much <3

I wish you were only a phone call away.  When are you coming back to the US? 

Around Xmas...

Bummer for me.  It's nice to have someone there.  I'm grateful you and Kate are here for me.  So both of you live outside of the US. 

Over all he is so much better than he was a year ago.  A year ago every person had him labeled as an autistic teenage that turned violent from hormones.  Nobody listened to me that it's not hormones.  I don't like feeling vulnerable and having to be at someone else's mercy.  Life changed since he started the Celexa even at 5mgs!!  He started hugging us again.  I cried I was so happy that my beautiful child let me hold him again and kiss his face. 

So I'm just waiting for all the other pieces of this puzzle to fall into place.

That is so good to hear ...just hang on.remembered some days he may feel like his going backwards...but that's just recovery...

Mmmmmm ... and do those things cause him anxiety?  Is it all noises outside or just the wildlife?

Can you keep the back door open so those sounds can trickle in a little?  How is he when he hears those on the TV?  Can he be encouraged to wildlife via books, nature programmes, collecting bugs etc.

Do you have a pet?

K x

Kate, we have 3 dogs and 1 cat.  I spend every day and night on pins and needles.  It is horrible.  It's every animal, every bug that makes sound, birds and a baby crying.  In the past year I would play the sounds from the internet, I got his teacher to do the same.  He jumps up and shuts it off and if he can't he'll break something.  Mind you this is a kid that never in his life prior to the trauma aka anxiety ever had a sound issue.  I had a fun, wild, crazy, life of the party kid.  Went to visit anybody we could.  Now I can't take him to visit anybody.  Most everyone has a dog, cat, bird, baby, etc.  But yet I can take him to NYC and he'd be ok because it's so loud there is no one defining sound.

?Lois said she had the sound issues too after her anxiety.  I am hoping Brooks will be as lucky as Lois.  

Yes JoJo I use to jump at the sound of anything.... everything was so magnified..it was crazy...none stop...it has stopped..but it took a while...❤

When you have anxiety your whole body becomes super sensitive.  We overthink, become emotional, angry our thoughts race and sound can feel really loud too.  Your nerves are on edge, and even sound like a baby crying could sound like a pneumatic drill to super sensitive people ... very much like when you've got a hangover and all you want is peace and quiet.

Strange how many sounds together like the city are ok, yet a single sound isn't.  Maybe one sound seems more piercing than many put together?

 

I hope to God that Brooks ends up as good as you have.  Last night was hell.  The very existence of the dogs bothered him.  He had that 'I'm going to destroy this house' look on his face all night.  It was pins and needles.... horrible.  We have always had pets, we're a pet family.  He hates the dogs now because of the sounds that they make.

Kate...  good morning.   Did you have the same experience as Brooks?  You could go into a crazy loud event like a fair or a carnival or a party and be ok, then not be ok when it's quiet and hearing individual sounds? 

It's really interesting how sensitive the body is and all of our senses.  About 20 years ago I suffered from anxiety.  The only thing I can remember bothering me were smells. 

We have drones at home.  We USED TO play with them in the house and the dogs would get all silly with them.  We can't touch the drones now.  The noise the drones make, the sound of the dogs running across the floor.  I HATE living like this!  He stresses me out..

I just didn't like anything loud at the time I was ill - I just wanted peace and quiet, for people to leave me alone even though I wanted to be with people.  Yes I've heard people smell things differently too and even sight can seem different ... more grey.  

When we're suffering with anxiety, its really our defence system towards danger.  If you think how an animal in the wild will use scent, prick their ears back and be on alert at danger ...... this is what our body is doing constantly and so our senses become more alert.  Its extremely tiring for the body to be in this state all the time too, hence why we get so tired.

Does he feel this way when he's having his good days?

 

Good morning JoJo...I know your experiencing hard times right now...but hang on.i know easier said than done... but he will feel better...like I said before it took me months..to feel better...and like Kate I have been suffering with no meds for a very long time...take care

Hi Kate you helped me so much in the early stages but 8 months on I'm still struggling! So fed up, I feel really down. head pressure, tiredness and out of control thoughts really bad. Surely this is not normal this far into recovery everyday is a struggle nothing seems to be working for me I am off the propranolol I was on and just on the Prozac but just still feel so far away from being better after all this time.

You are such a helpful person every time I read something you write it really gets me through tough moments.

X

I think You are correct!  His senses are heightened more during anxiety.  Let's say on a scale from 1-10, 10 being the worst, right now his anxiety is a 5.   Now that's good right?  He's good, but if something doesn't go right, he's off in a snap.   Last night he was an 8 on the scale.  I think 

That is correct JoJo...my senses where heightened during anxiety...bingo

Hi Abi

Gosh 8 months and still struggling???  What dose are you on now?  How long have you been off Propranolol?

Have you had any moments, days or weeks when you felt well during all these months?

K x

Yes I was a constant 5 I would think, and often went up to 8.  Not comfortable.  Poor lad.  Is he able to understand about relaxation - as when the anxiety peaks the best thing is to relax towards it instead of fighting it.  Its reacting to it with tension, stress, anger etc that reinforces it, so doing the opposite will slowly give your body the message not to react to it.  It helps to calm, and over time the anxiety will fade.  Of course at the moment this is also the side effects of the medicine ...... but relaxation will help enormously.

K x

I am sorry I haven't been on here and may not for the next few days.  My rock, my boyfriend ended up in the ER yesterday with 3 blood clots.  One in each lung and one in his leg.  I am now all alone 24/7 dealing with Brooks' anxiety issues and it scares the you know what out of me.  I am not happy. 

I do have something to report, not sure what to make of this... but I've been giving him the 2 Benadryl to help chill him out since Saturday.  Today is the first day that the Benadryl really hit him and made him really tired.  For 5 days is hasn't done that.  I got him over to my parents which he hasn't done that either in a while and now he's taking a nap.  I'm not aiming for him to nap but this is the first time he is relaxed.  I am wondering if the meds are working better now and his body is allowing the Benadryl to do what they are meant to do. 

What do you think?  And Hi Lois!!!

Sorry about your boyfriend....but that's great news about your son...it could well be his moving forward...take care

Oh I am sorry to hear that - absolutely you need to be there.  We'll be here when things have settled for you all.  Best wishes for him xx.

Glad to hear your son has been able to nap and calmed a bit.  Yes I've heard the Benadryl helps take the edge off the anxiety - he certainly can do with a good nap I expect.  You too.

If it helps get him through this sticky patch, then why not.

K x

I'm still on the 20mg what I started on and iv been off the propranolol for around a month. I do have moments in the day when I don't feel too bad but it soon goes. I have had little improvements but still have such low low moments it's horrible.

Your messages and advise helps people so much so thank you.x

Abi, Kate and Lois have the wisest advice, I'm a newbie on here.  If you don't mind me asking..  what made you go off the Propranolol?  I'm on this forum for my son who is autistic and suffers from severe anxiety due to trauma.  He is currently taking Celexa and I am sticking it out just like Kate and Lois suggests.  But I had that other drug Propranolol waiting in the wings wanting to ask his doctor about it, but am holding off until 6 or so months go by to see if stabilizes from the current med. 

Hi Kate, Hi Lois..  just plugging along, hoping my bf comes home before this wknd is over. 

How can I find out if giving Brooks Benadryl every morning is ok?  I don't give it to him all day.  I don't overdose him.  I just give it to him to take off the edge until the Celexa can do that. 

As of now..  so far so good .  I have to knock on wood.  No episodes, no violence.  I can tell he still needs to get the Benadryl because before it kicked in I saw the anxiety on his face.  His whole facial expressions change.  His mouth gets all dry and he looks like he's in fear.  Next week it'll be 4 months!

That's great JoJo...if it's helping him with his anxiety is ok...I have relatives that take Benadryl three n four times a week all their life's ..allergy sufferers... saying a prayer for your partner....take care

Hi Abi

Sorry for the delay - have been away for the weekend.

I have read that the Prozac can increase the effect of Propranolol and so you have to be monitored whilst taking these together.  Maybe taking them increased your symptoms?  I'm not sure.  So you've had moments in the day SINCE coming off Propranolol or did you have those when on it?  

Recovery starts by having moments of feeling ok, which build over time.  If you've had these moments since coming off the Propranolol maybe the med together didn't agree with you?

Have you been on any other SSRI's in the past other than Prozac?

K

Hi Jojo

Been away for the weekend so am behind with things here.  I think its best to ask a Pharmacist about how long Benadryl can be taken.  It is for allergies so imagine some people take it for quite a while ...... but the Pharmacist will be able to advise on that.

Glad to hear there are improvements - at least there are signs that the meds are working.

K x

Hi Kate, I really wish I could speak one on one with you or Lois.  Lois isn't in the US.  Are you?  

Not funny, but the headline of this forum is 'feel like I'm going crazy'.  Well having an autistic teen going through this stuff is making me feel like I'm going crazy.  This is unbearable!  

Hi jojo

Yes I'm across the pond in the UK too 

I can imagine the stress for you - are you getting lots of support from the doctor or similar?

K x

No way!!  Not even the slightest!!!!  First of all, I lost count how many doctors I had to go through to find one that will have Brooks as a patient.  The last time he was there, he suggested Brooks be admitted into a hospital because he didn't understand why the Celexa was working, then wasn't.  Can you believe this????? 

I really don't know how much I can take with everyone not giving me once ounce of support.  This is why I really needed you and or Lois.  This forum is great, don't get me wrong, but I need real support.  I wish the doctor had a clue of what's going on. 

Oh that's quite disgusting not to have support.  There's support for lots of physical afflictions, so why not autism?  Is there nothing for you either ..... carers support groups or anything?  How can that doctor prescribed a medicine yet not even know how it works?

As well as this forum for the meds he takes, is there anything online re teenage autism support?  I know its online again, but I'm sure they'd also have connections to doctors near to you?

?K x

Kate and Lois, what happened to the ladies?  I miss both of you..  

I'm still here  xx

K x

Kate, I am sorry.  I keep re-reading your comments and all the info you shared with me.  I still need comforting reassurance.  This past week has been a nightmare with him.  Monday and yesterday were so bad.  I have been giving him 6 Benadryl's spread out throughout the day to help chill him out.  I know I know I know it takes time and this med is not a quick fix, but today marks 4 months being on the 20 mgs., shouldn't  the anxiety be less by now?  I mean lesser in severity?  Each time I feel I see a little light at the end of his black tunnel, there goes a whole pile of rocks in front of it.  He starts school in less than a week and I really needed him to be at a better place mentally than this. 

Hi jojo

4 months is a good time, but it can still be early for some.  My son had 4 months of hell before things started happening - little chinks of light that grew over the following months.  He didn't work those first 4 months and when he returned to work he still wan't right, but it was a step in the right direction.  

So whilst your son might be having small breakthroughs, he might still have a way to go.  These meds can really take a long, long time ...... though I reckon the worst months are now behind him.  It should get easier, but it happens so gradual it soften hard to see it.

Don't expect him to be 'there' yet when he returns to school ...... it should improve over a little more time though.  Do the school give him support?  Are there special teachers there?

K x

4 months of hell...  gee that sounds so familiar to me

So that entire time when your poor son was suffering, his/your doctor gave you the advice to be patient?  The doctor kept telling you to hang in there and give it time?  If so, that is truly amazing and you don't know how truly lucky you are.  This is why I had the freedom to speak with you and Lois.  I need that.  I need what you had.  I have literally NOTHING.  No support or encouraging words.  I really need you give me that comfort that I'm doing the right thing by not taking him off of this stuff. 

During those 4 months of hell for him, did you question yourself if this was the right drug for him?

Joann

It wasn't easy in the beginning.  Yes the advice was take these, and we'll see you in 3 weeks, we'll put you down for the psych team but there's a looooonng waiting list.  I paid for a private therapist but my son didn't warm to her, and he had to wait for other therapy too.  The support was disgusting.  I did all the support, not the doctors.

Every time my son returned to the doctor it was a different one, eventually when he got to therapy it was a different person each appointment so he'd start to confide in one and they wouldn't be there the next time, and the psych team was still a looooong wait ....... then my son had a complete melt down.  Long story ..... but he was taken to hospital and thats when I lost it with the doctors and told them if they'd acted sooner it wouldn't have reached that point and the whole system was a disgrace.

From then on my son was seen weekly by so many and only then they gave him excellent support.

One thing they were good at during that wait - signing him off work.  That's it.

My husband and I took him out daily for a walk or cycle ride, I talked to him daily and accompanied him at every appointment until he decided he could go alone, then I just waited in the waiting room each time.

During the first 4 months I didn't question the meds - I knew they'd help in time.  Would he have recovered without them?  I'm not sure.  Yes they made him worse to start with but from what my son was like at the beginning, the meds helped him recover completely.

Trouble is with SSRI's is that its not a 'one fits all'.  Different SSRI's suit different people, and different doses too.  Not everyone has the same side effects either - some people have a few and others have many, and everyone recovers at different rates too.

But ... support could be better.

 

It's truly is a disgrace how these doctors are the opposite of what they should be!  And they work mental health and they give mental abuse to patients and if they are "too much work", they just don't want to be bothered.  I truly am so so very happy for you and your son.  I really am.  I hope with all of my heart that my son recovers like your son did.

?Question..  I know I never told you this earlier but he went to 20 mgs on May1st.   He did great!!  The anxiety was like 70% better.  Then a month after that he wanted to see if he'd be better on 30 mgs.  Went up to 30 mgs.  Seizures got really scary, anxiety back, he wanted me to ride it out for 2 weeks.  I did then he was lowered to 25 mgs and the seizures and anxiety were bad.  Then in the beginning of Aug, not sure if it was Aug 9th or Aug 16 I lowered back down to 20 mgs.  He had a great first week!  I mean really great..  Then BOOM anxiety through the roof.  So is this pattern normal.  We only talked about months, but what about leading into the 4-6 months?  

I even had to fight the receptionist at the doctors when I first took my son in and she sneered at me that we were late and she doubted the doctor would have time now.  I actually leant over the receptionists desk and hissed at her if I didn't see a doctor I'd wait until there was one available as I'd just picked my son up from the roadside outside his work where he'd sat waiting for me whilst I was still in my pyjamas and he'd broken down in my car on the side of the road, AND I had to go home and get dressed ... or I'd have arrived at the doctors still wearing my pjs'.........  We were seen ..... but by that time I was upset too.  If my son had gone in on his own and she'd spoken to him like that, gawd knows how he'd have felt.  He'd plucked up the courage to confess to me so he needed to be treated with compassion, not like some annoying tiresome patient.

I have read that some people feel an instant boost after increasing meds.  However increasing meds doesn't mean you'll get better any quicker than a lower dose - and increasing gives you side effects again.  Everyone suits different doses - what suits one person doesn't necessarily suit another.  It really is trial and error.  It also doesn't matter what dose you take as you cannot avoid the side effects - you will still go through the same highs and lows - and sometimes people think this means the meds aren't working and need a bigger dose.  

It really is a waiting game on these meds - and the first few weeks / months are the worst.  Some people find a boost when increasing / lowering meds and then they settle down and the side effects start.  They do increase anxiety to start with, so understanding that often helps the person get through that.  Throughout recovery there are often blips where you feel good for days or weeks followed by the anxiety returning again which can feel like you're back at the beginning.  This is normal and will pass.  The blips get less intense and shorter over time.  The best way to deal with these blips is to let them be, don't fight them, relax towards them as you carry on with whatever you're doing ....... however uncomfortable they feel.  Fighting the anxiety just means you tense up which causes stress which causes anxiety.

My son had 4 months of dreadful anxiety where he just couldn't work, and after that things started easing up, but he still got those blips which sometimes floored him.  They got less over the following months until they didn't come anymore.  Some people get better much quicker than others - there seems no one set of side effects, no one time span, no one dose and no one SSRI that suits all.  They are strange meds because they don't allow you to just gradually feel well as if taking a headache pill or an antibiotic - with SSRI's its like being on a roller coaster.

Many people recover on a lower dose and many on a higher one - just stick to one that suits.  Its just that waiting game to play along with now 

K x

I no kate I have not felt the need to come on here as much so I guess that is good but yet again I find myself in a massive blip and feel like I'm back at the start. I'm still on the 20mg and I have no idea how long I have been off the propranolol for I'm guessing around three months.x