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Can akathisia improve then get worse again?

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Magenta22
Magenta22

I withdrew from 10 years on oxycodone, firstly at a clinic, then for 3+ weeks in utter misery at home. I couldn't eat and all the other nasty bathroom problems...I eventually got to my doc in absolute agony (full of codeine) and he gave me Prochlorperazine for nausea. To cut a long story short, I got akathisia (I didn't even know that it was an antipsychotic, thought it was just an anti nausea med)  I tried several things from my GP then tried Acrivastine (Benadryl) and got some relief. It's never seemed to totally disappear but the utter dread and terror had gone, just fingers and feet with minds of their own, but it's been seeming to come and go. Can this happen or am I just panicking because I think it's coming back? (I've never had a panic attack before feeling akathisia) I'd be grateful for any imput.

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  • meteor63
    meteor63 Magenta22

    Posted

    So sorry to hear you have akathisia. I have severe akathisia. I've heard it can come and go. This is described as 'waves' and 'windows'. Windows are when things feel better and waves are when they are worse again. These happen over a period of time until eventually things get better.
    • Magenta22
      Magenta22 meteor63

      Posted

      Thanks so much. Waves and windows, that sounds about right. My doc says it's imposssible that the Metoclopramide could have caused it...but I know it did, I took nothing else. He insisted that once I'd stopped it it would stop. (So what was supposed to be causing it??) You say you have severe akathisia now? Are you not taking anything to stop it, at all? I don't know how I survived the few months I had it. I am so very sorry, I so hope you can find relief.
    • meteor63
      meteor63 Magenta22

      Posted

      Doctors always say drugs didn't cause this stuff. I've suffered so many ridiculous symptoms because of psych meds. That med absolutely did cause it for you. I've heard of many who got akathisia from the drug you took. It's known for it. I'm not taking anything. Can't risk it. I got it on citalooram in September 2013 so have had it for 16 months with no break. I was kept on citalopram for 8 weeks despite having akathisia and loads of other side effects (I didn't know what was going on). I also had valium sometimes and I think that contributed. I was then put on zoloft (sertraline) and seroquel and they made me even worse. I took lorazepam sometimes. I came off everything last march and on top of the severe akathisia and other side effects, I got severe withdrawal syndrome. I tried going back on zoloft a couple of months to stop the withdrawal but it didn't work. At this point I have been off everything about 7 months and have about 50-60 symptoms. I've read many success stories by others who had terrible akathisia and got better. That keeps me going.

      I'm horrified that doctors are not acknowledging that this is happening to people and there is absolutely no support for people like us.

    • Magenta22
      Magenta22 meteor63

      Posted

      Oh my heart has almost stopped. How on earth are you managing without some help? There are several types of meds that you can try that aren't antipsychotics or antidepressant meds. The simple Benadryl helped me most, I'm struggling remembering the others I tried as I have fibromyalgia which makes you daft as a brush. Propranolol stopped it dead for me but made my depression soooo bad I was looking up tickets...no I won't say, it might trigger you.  Have you tried propranolol? There was a third type (I had to research it all myself...I found out what my problem was myself...I'd never heard of akathisia) but it gave me my only ever psychotic problem. (Thought someone was in my bedroom) I truly understand you saying you daren't try anything but wouldn't benadryl be wortth a try, being a simple (if there is such a thing) antihistamine?
    • meteor63
      meteor63 Magenta22

      Posted

      I'm so sorry..you started this discussion and you are now helping me! Sorry. I didn't mean for that to happen. I've taken the uk equivalent of benadryl. It so nytol here. It didn't work. I took propranolol. It didn't work. It helped calm my head a little but I started to develop a rash and that worried me. People who had it like me and recovered all say it's best not to take anything and that eventually it goes away. I take hope from all the success stories. I'm so incredibly med sensitive. At this point I'm just not willing to take anything. I know several others fighting their way through this. People are starting to get windows. I've had sort of windows too. I've had times where it's been less bad. Always there but at different levels. Before Christmas I had my best window yet and felt a little bit happy and quite hopeful. It will get better in the end. Oh, I took antihistamines too but they made me feel worse. I used to take antihistamines in the past it I can't take them now. The drugs messed me up so it's best to leave well alone.

      thanks for helping me..sorry I've ended up being supported rather than doing the supporting! You absolutely will heal.

    • Magenta22
      Magenta22 meteor63

      Posted

      Hi, I'm in the UK too :-) Nytol are either 25mg or 50mg, I took benadryl (same thing, diphenhydramine) at just 8mg 3-4 times a day and it worked for me. Yes, the rash from propranolol is a big nooooo flag. I'm amazed that valium didn't help you, but anyway, coming off benzodiazepines is (the second) worst thing ever and can take years, literally, reducing by tiny crumbs. I know there is no cure for akathisia but I can't get my head around how you are coping. You have the strongest, most determined heart in you. I don't think, I know I couldn't have managed what you have, you're more than brave. Clonidine!! Say you've not tried that....oh I hope not, because you could definitely try it. It's not something even linked to psych meds. It's supposed to be good for withdrawals so therefore I'd say akathisia. (I'll buzz off and look it up.) I have terrible trouble sleeping, if you've logged off for the night, I'll leave a message about clonidine.
    • meteor63
      meteor63 Magenta22

      Posted

      Ah, thanks blackswon. Lorazepam is the only thing that worked but even though I didn't take much and was only taking it here and there over 3-4 months, it stopped working and made my withdrawal worse. Thank you so much for your kind words. They mean a lot especially as the only people that truly know what I'm going through are others with akathisia. Friends try to help and I appreciate it but they don't get it. They ask what I'm afraid of and I say it's terror for absolutely no reason. They don't understand. I try to hide the movement from people and people can't understand feeling suicidal for no reason every second of every day. I'm sure some people think I'm weak and pathetic. If only they knew! I think people who make it through akathisia are the strongest people on the planet. I honestly can't imagine anything worse. I wouldn't have thought I could manage it, I attempted suicide in December 2013 and after that I found the akathisia blog and realised what was happening to me. I've read of lots of people who had it just like me with no real windows or no windows at all for a long time but eventually recovered.

      i haven't tried clonodine. I've read about it. I'm just so flipping scared of drugs. I can't risk getting any worse. And I've read from other recovered people that they tried everything and all made it worse. They said it really is best to take nothing at all and white knuckle it through. There really is no other way except to keep walking through hell until I'm out.

      i hope you get a better nights sleep tonight. Somehow, I do sleep! That's something. I can eat too.

  • meteor63
    meteor63 Magenta22

    Posted

    There is an akathisia blog. I don't know if you've seen it? The lady who runs it got akathisia from the same drug you took. She is recovered now and has seen lots of people through akathisia. I don't think I'm allowed to post links here but if you look up akathisia blog you might find it or I can private message you. You will be ok.
    • Magenta22
      Magenta22 meteor63

      Posted

      I'm not sure. I remember reading something a few weeks back that I thought was fantastic from a young lady. I'll look it up now. Thanks very much.
    • Magenta22
      Magenta22 meteor63

      Posted

      Found the blog....I did read it weeks ago but had forgotten it as I was really bad with the akathisia then. Sugar!! I'm craving sugar like mad and never have before. I'm putting on all the weight I lost during w/d from my pain meds. I have to stop it according to her blog.
    • marianne72376
      marianne72376 Magenta22

      Posted

      Hi i have been to gp and 2 say i have akathesia and dyskonisia but the akathesia is worse no sleep even with zopiclone 7.5.what is the link to that website. It is so bad and i can hardly eat. the sweats and the muscle twitches and insomnia and lack of concentration on anything. i would not wish this on my worse enemy.i was taken off flupentixol cold turkey then put on citalopram then a week later on quatiapin then psych said come off all in 3 days it made everything worse but i had high blood sugar and cholesterol and weight gain on 3 years of flupentixol and no review or blood tests till i argued .

      Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

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  • fran74909
    fran74909 Magenta22

    Posted

    hi Magenta, im sorry to hear how bad youve had it lately and maybe youve managed to get rid of it. ive had it 14 years. Iwas on an antipsychotic called Olanzapine for severe Bipolar. Theyve given me quite a few medications which seem to work for a while and then stop. Eventually after much complaining they put me on Quetiapine which reduced the feeling to about a quarter. i knew rotate the side effect medication - Propranalol, Tryhexiphenydl and procycladine. i did try a lot of other health alternatives such as vitamin e and c but they didnt work well for me. The best one i found is a spray magnesium i bought from amazon. I read all the reviews that seemed mainly about sports people and their injuries and it was all good news. i do seem to remember one fella saying it worked for his grandma's arthritis and so i decided to try it. It worked wonderfully for about 3 months and then stopped like the side effect tablets so i now rotate the magnesium too and its the best of them all. i would highly recommend for anyone reading this not to use Nytol which has the anticholinergic drug diphenhydramine. Diphenhydramine is one of the worst anticholinergic drugs out there and is really not good for the brain. Hope you soon feel better x

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