Pins and needles

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Hi I am new to this site.  Am currently on 37.5mg of Extended release Venlafaxine.  I have come down from 225mg, then 150mg then 112.5mg then 75mg and now the 37.5mg.  This has taken me about 2 years.  Because of the large drops, I have had to take months and months inbetween to try to stabilise.  The last drop to 37.5mg was taken in October last year and I haven't felt stabilised enough to try to drop again.  I am still feeling terrible.  My GP wants me to change to 37.5mg normal release, not the extended ones and cut them in half and take half in the morning and half at lunchtime.  Has anyone had any help by doing this.  I am afraid I suppose on changing from the XL ones to the normal ones.

Also I am waking up each morning with pins and needles in both hands, as if you had been sitting on them.  I can't understand what this has to do with the withdrawal, any ideas.  I know it is part of the withdrawal.

Any thoughts would be welcome.

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20 Replies

  • Posted

    Hi Emily

    Congrats on getting down to 37.5 - that's a huge acheivement.

    I'm writing because I too have had the tingly sensation in my hands a few times whislt on Ven altho' not during times when I've been trying to withdraw - after a bit of googling I came to the conclusion that it was probably me to do with my age and possibly being pre-menopausal than the tablets...

    I'm on the extended release ones so I can't help on the changeover to the normal ones but I do wonder why your GP is recommending you to cut down while you're not feeling right in yourself (unless you desperately want to be off them yourself)...mine recommends waiting until I feel stable again, and then waiting a few more weeks before making another reduction. I've tried and failed this week to go down to just 37.5 but am going to have to give it a few more weeks and then have another go, presumably with the cutting in half route as cutting out a whole tablet was just too much. 

    Take care of yourself,

    Tessa 

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    • Posted

      Thanks Tessa for replying.  After the big drops I am adamant that I won't take another big one.  I don't care how long it takes to get off the 37.5mg.  My GP has said to try this once I feel I am able to.  I am just so worried that I will never feel stabilised.  It has been over 6 months now since my last drop and this last week I have felt awful again.  The other drops I have taken have been at least when I felt stronger.

      Take care and good luck with your taper.

      Emily

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  • Posted

    Hi emilylou,

    congrats on making the journey so far on getting rid of your venlaflaxine! A massive achievement! 

    I too was on my journey 5 months ago, on 225mg extended release. I was told by my psych that i needed to switch to 'normal release' before my reduction could begin. I switched and held the dose for 3 weeks. You cannot chop extended release as they have a film coating to protect it in the stomach and rather unhelpfully, and keep us from coming off the stuff, or so the manufacturers think, they don't make and market doses lower than 37.5mg in either form! docs in the uk cannot get it compounded or made into a liquid as there is not a license to do this either.......all cunningly designed to stop us quitting! 

    Anyway, i would advise making the switch when you are ready and in a good place unless there is a medical reason for you to quit? Don't split the dose, i tried and it made me tired and i got a rebound effect of it washing out my sytem, then i'd have some more, then it'd come out, if you get my drift. I had mine in the morning as i figured at night i cud cope n sleep the withdrawl away.

    have you tried the ' internet' prescription to ease the withdrawl? Stugeron ( sea sickness pills for the sickness and unease) and benedryl ( acrivastine) or sudofed non drowsey. Each day i had 2x benedryl 3 times per day and 2 paracetamol for the headache. Keep busy too! It helps distract you. YES, you will feel utterly crap on some days, my worst was day 3,4 and 5 after the drop. I made my drop tiny after 37.5mg

     

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    • Posted

      Hi Helen, thanks for replying.  Even on the extended release I have always felt terrible when I first wake up.  I take my tablet at 8.00am and then I start to pick up.  I can normally cope and do things until about 1.00pm lunchtime when I notice I start to go down again.  How are you making small cuts from the 37.5mg tablet if you don't cut it in half.  Also doesn't switching from extended release to 'normal' release leave you in withdrawal during the day, because of the half life.  I have read that you need to take the normal release more often during the day.  Not possible if you are only taking 37.5mg, if you get my drift.

      Good luck to you in you taper, take care.

      Emilylou

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    • Posted

      Hi ya,

       i was literally shaving off bits with a knife....all a bit desperate in this day n age but thats the manufacturers for you. I get the crash you mention, but don't forget you are not technically on a medically recognised theraputic dose! My crash happened after lunch which is why i mentioned keeping busy. Take your dose a bit later maybe say 9am to push the crash back to a busy part of your day? I dunno your schedule, but it may work. I guess its a trial and error 'game' . Thats what i treated it as. I am competitive and like to win so in my head i was trying to 'beat it'.

      Yeah, i got withdrawl in the day but you MUST prepare for this. It'll happen whenever you switch n drop. The rebound is less nasty on normal release though! Trust me, i tried it both ways! There were days i had to stay off work with the shivers, aches, pains, stomach cramps, brain shakes the lot. Thats why you need to be mentally n physically ready. For me i set a goal, 6months to dump venlaflaxine. I did it in 5 months. It is a personal journey and one which won't be nice, but in my head i needed a time frame. I got to the point where my meds were making me feel ill......battling the lethargy, tiredness, weight gain was no goo for me anymore and that affected my mood. The meds did the job after my severe PND but they'd out stayed their welcome in my life.

      If you are ready.......go for it, but do it slow. 

      Don't try if you are still poorly, the effects cud be worse than the 'gain'.

      the best of british to you! Good luck! 

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  • Posted

    sorry, my internet went weird.

    my psych was intrigued by the internet prescription but  NEVER disuaded me. She knew about the chemical similarity but there was no scientific evidence, but she said if it worked for me, then all the better! 

    I would not mention it to your GP as they'd probably freak. They know little about most antidepressants they dish out, let alone the safe way to withdraw people! 

    When i was in crisis i had diazepam on standby.

    another interesti possibility is to ad on prozac to your withdrawl. This is known by those with the right medical training (psychs mainly) and it can help let people down slower. Prozac has a longer half life in the body and lessens the venlaflaxine crash and is less addicitve too! Ask! If your doc don't know either get them to research it, get a second opinion or take them the research off the internet and show them! (remember, we are all lab rats to them...they kniw only so much!)

    as for the pins n needles. Yes, entirely possible. Your whole body needs to re balance and wake up. Your synapses, nerve endings, will be fizzing with lots of info and messages the tablets blocked out for the length of time you've taken it for! 

    You will concquer this I know. Be strong and gain the support of family and friends. I had an advocate at work had my hubby's phone number and my parents to call them if i had a 'crash' so they could come and get me! She was an angel...everyone needs one on this journey.............

    Before i sign off, do you have therapy? Talking therapy is a goddsend on this journey. Insist your GP sign you up. I was a part of a Notts Uni study and theybhave proved its worth, something we all knew, but the Gov't needed proof of! Gone are the dys when people with mental health issues should be doped up and left to cope. Alking therapy helps! 

    Good luck! Xxxx

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  • Posted

    Hi

    Firstly, well done on how far you've come getting off the meds. smile. It's tough!  I highly recommend you look at the Road Back program to stabilise your body and gently drop the last dose.  Look it up on the internet and follow his recommendations for the pre taper for time release meds. The program is fantastic and the supplements they recommend really do help with the withdrawal symptoms as well as stabilising your body between dosage reductions. Jim, who designed the program, is helpful too and always replied to my emails.  I'm happy for you to contact me too if you need some advice or encouragement. smile My email is _____.

    Patient Moderator Note: I have removed an e-mail address from this reply as it is the policy of patient.info to not publish these within the forums. If any user is interested in this removed information they should contact the author via the Private Messaging system requesting such. Thank you for your cooperation.  

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    • Posted

      Hi Sam,

      Thanks for replying.  I will look up the Road Back Programme.  Are you off the medication or still withdrawing.  I really need the encouragement because it's been a long time now withdrawing as we all do.  I can only really talk to my husband, who is really supportive but I think even he is getting fed up with it all now.

      Take care and look after yourself.

      Emilylou

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    • Posted

      Hi Emilylou

      I kicked the last dose 8 days ago. Still feeling head shocks, but they are diminishing every day.  Just still really tired but getting there. I dropped the last 37.5 in a week, which probably wasn't the best idea, but I couldn't get the normal release and got tired of dragging it out. It's been quite difficult but definitely manageable. With the supplements, even that big a drop has been ok. Still, I'm looking forward to the day when I feel bright again. Baby, baby steps.....smile

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    • Posted

      Hi Sam,

      Well done you.  I hope you start to feel 'normal' soon.  It's a crime isn't it that these tablets/capsules aren't made in smaller doses, would make it all so much easier.  The makers probably don't want to make it easy to get off though, they lose the revenue.

      Take care.

      Emilylou

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  • Posted

    Hi Emilylou,

    i agree with Sams recommendation of supplements and others dscussing the topic of Venlaflaxine withdrawl have said too that supplements help.

    i used to have a multivitamin anyway but added in Liverel to my withdrawl. Its a supplement to cleanse my liver had help it get the stuff outa my system. Quite pricey but shop around, sometimes on 3 for 2. my hubby used to laugh that staying on Ven was monitarily cheaper, but he now has his wife back from her coma! 

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    • Posted

      Hi Helen,

      Thanks for your replies, I really appreciate it.  I am taking a high strength cod liver oil capsule which I have taken since I started the withdrawal.  I will look up Liverel.  I notice that you found the days after a drop more of a problem but I don't seem to notice too much to weeks after for some reason.  As I said I am still have bad withdrawal effects since the drop in October!!  Four weeks ago I came back from my son's who lives in the US and I am sure I have felt worse since then, I am putting it down to the 5 hour difference from here and there and taking my tablets accordingly.  Don't know if this is so, but I have had it before when I have come back.  Everything with me seems to be on a delay which makes it difficult to realise I am having problems until too late to updose, which I would really not like to do.  Throughout the withdrawal I haven't updosed.

      Take care,

      Emilylou

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    • Posted

      Hi Emilylou,

      We are re thinking of you and willing you to succeed. Maybe your low is because you have returned from seeing your son and it is mood related in that sense and not the meds.

      The withdrawl is a marathon, not a sprint.

      You say you think your hubby may be getting bored of hearing you......has he said that? I bet not! He knows what a terrible time you are having coming off this stuff and I am sure does not mind one bit talking.

      Please, due pursue your doctor for some talking therapy, there must a be a talking mental health service near you or even a councillor at your surgery who visits...pester him or her to make you a priority to help suppport your efforts further.......

      You will do it, I know. If you've had a child, you can beat this!

      Keep up the good work!

      Helen

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    • Posted

      Hi Helen,

      You are right, my husband hasn't said as much I suppose I just worry about it.  I was having counselling but the counsellor seemed to be getting frustrated with my talking about withdrawal and tablets.  I could perfectly understand as it wasn't giving her anything to work with me on.  It did help though because it was a place where I could go and talk about it as I only talk to my husband about it.  She didn't understand me not wanting to take another drop yet.  I would like to see someone but feel I would only talk about the withdrawal and don't know if that would be helpful.

      I have had two children and have said I would rather have another six rather than this!!!!  After this though I feel I could do anything!!  I would rather have depression any day than this, at least I could work at it rather than every day seeming like groundhog day.  I realised a while back that this is what it feels like, that's a good word for it.  Never mind, soldier on it will NOT beat me.  I will win this war.

      Take care

      Emilylou

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    • Posted

      Thats the spirit.

      Maybe you need to see a different cousellor to get the bottom of the depression which saw you being put on the tablets. Someone trianed in CBT, Psychotheraphy or even a therapy group to talk about your issues..........where i see my psych is a community based mental health unit and there are all sorts of groups and acitivties you can self refer into.......gardening, reading, music, snooker/pool etc.I think it has the fancy name of a HUB!

      I'm not much into group therapy, but i can see a place for it.

      In Derbyshire there is a sevice called Talking Mental Health which you self refer into.....is there anything like that near you?

      I see my new counsellor through this service but its a way of accessing care at a primary care level if you have a useless doctor or don't see a psychiatrist....my psych helped me refer in though as i didn't have CBT for a long taime after being transferred out of The Perinatal Mental Health Care Service after having my little boy and I missed the Talking Therapy and Space to bat ideas around with someone who wouldn't give me an answer they thought i wanted to hear!

      Go harrass your doctor on MONDAY and get the ball rolling or try a new hobby! All helpful distractions to your withdrawl!

      Good luck! Helen

       

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    • Posted

      Helen, I will look into therapy, good idea.  Sorry to keep bothering you but what I really don't understand is that when I feel ok enough to change to the immediate release tablets, if I take it in the morning as I do now with the XL how does it last all day.  I have read that because it doesn't give you the 'fix' throughout the day you need to take it 2 or 3 times a day.  Obviously you couldn't do this if you were only taking 1 x 37.5mg tablet and only taking as a once a day dose thing.  Bit muddled but I hope you can understand my ramblings.

      Emilylou

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    • Posted

      Hi Emilylou,

      Hey, not ramblings.....rapid thoughts!

      I think you need to be stable on your XL.

      As I have said I became convinced that it was making me feel more ill, more down, more depressed, hence the reason I decided to stop it.

      I never took my XL in the morning. Venlaflaxine, on the dose you were on, 225mg, has a sedative effect and I couldn't function in the day on it. I am a teacher and it is nightmare breing tired, having a 3 year old  and having 30 adolescent kids to control, hence the reason why my Psych at the beginning told me to take it at night to get a good nights sleep. I cannot understand the logic of being told t take such a dose in the day!

      Sometimes, as with some things in life you have to bite the bullet. There may never be a good time to make the switch. Splitting the dose of normal acting would be counter productive as you'd get that rebound I have talked about. It won't last all day. You need to be clear about that and be prepared.

      Try having the sudofed or the benedryl acrivastine 3 times per day. It is chemically similar to the Ven and stops/helps stop the crash you seem so worried about. OR go ask for the prozac to support you. You have done really well not to updose during your withdrawl. I was determined not to as well and didn't. Be proud.

      Finally, I have to ask. Is it you that wants off this or is it your doctor?

      It has to come from you.

      There is no reason why you couldn't stay on 37.5mg, a clinically ineffective dose, but a crutch for you, for the rest of your life (unless you want a another baby i guess !). BOTH my Psychs said that it is not a medication that causes other issues in the body, but the doc should do routine blood tests to check Liver function etc.

      When i was down to my last crumb of Ven in my withdrawl, I knew it wasn't doing me any good clinically, but to me I needed it at that time and took it for over a week before I decided to not have any.

      That was a big day and a big decision. I was not pressured by my Psych to drop it.........she knew i needed my safety blanket, my net to get through the day.

      The switch will be hard, it will be a shock to your body and you will have a reaction. Thats a fact, bit being prepared is half the battle. Have a plan, have a big bag of alternatives to support, have your supplements, have a support at home and work and try when YOU are ready.

      I planned my drop like a military operataion. My motto is forewarned is forearmed ..............that little pill wasn't going to beat me!

      Keep going and please, don't apologise for asking people, whoever for help. Helen x

       

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    • Posted

      Hi Helen,

      It is me 1000% who wants off this stuff, my doctor doesn't believe any of the withdrawal stuff and thinks I should just stay on it, no chance.  I want my life back.  We are out to our sons again in June, on top of the other trip this year but he has recently split from his wife and we are helping with the children.  I wouldn't dream of doing anything before that and will see what happens when I get back.  It will be at least a year before we go again so I won't have any trips to muck up when I take the thing.  I do not want to stay on 37.5mg and I will certainly not be having any more children as I am nearly 59!!  I will try the benadryl 

      Take care, have a nice weekend.

      Emilylou

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    • Posted

      Some doctors get brain washed by the bull**** literature in the box of tablets; discontinuation symptoms.......another word for withdrawl in my book and yes, my Psych said its not a clinical definition of withdrawl we are suffering, its different.....its all a ploy to stop people saying they don't want to take addicitve medicines.........the makers should be ashamed using such a phrase! 

      You sound like you are getting a plan anyway, planning the time after you have seen your son again! Great stuff ......you sound like you are going in the right direction. 

      Good luck amd take care.

       helen

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