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Blog: My akathisia experience by akathisiainfo

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Altostrata

Documents akathisia as a result of drugs, with many reports of recovery in the comments http://akathisiainfo.wordpress.com/2013/08/13/my-akathisia-experience/
 


ADMIN NOTE: The blog titled My Akathisia Experience is not written by me. It is written by its administrator akathisiainfo (aka Angie), who is not a member of SurvivingAntidepressants.org.

 

I do not know the author of this blog personally. I did not suffer from akathisia.

Edited by Altostrata
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WinningThrough

The akathisia site is brilliant and the lady who runs it gives me such hope. From everything I've learnt about this condition, everyone recovers in the end.

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andy

Since I've tapered off most of the drugs I was on I've realised just how bad my akathisia was,it's dropped to almost zero now I'm nearly off zyprexa

Doctors should be forced to take these drugs before they prescribe them !

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Altostrata

Please post in the blog comments about your recovery from akathisia -- how long it took, what were the stages, did you do anything to help it along. This will help others who are suffering.

 

Also, one would hope, an occasional doctor will look at it and learn something.

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compsports

Thanks for sharing this link Alto.  Wow, what people went through sounds horrific.

 

Regarding companzine, I will have to make sure that is not given as an anti nausea drug in case I if god forbid, I start vomiting in the hospital.

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Addax

The mixed anxiety and depression, feelings of hopelessness, and the body tension and inner restlessness are all apart of Akathasia? Not necessarilyt separate conditions? That's sort of what I came away with. Am I understanding that correctly?

 

Great blog... It provides hope. :)

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Altostrata

The body tension and inner restlessness are the definition of akathisia. Anxiety and depression can ride along, it's very distressing.

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WinningThrough

It's so much deeper than anxiety and depression. It's a feeling of terror beyond anything anyone can imagine. A feeling of darkness and terror residing inside your body that makes you need to move your limbs over and over and over. Keeping still is incredibly hard. It's a feeling of screaming from within. It makes you want to scream and scream and scream. You'd do just about anything to make it stop but you can't. You just have to live with it. You feel like there's something in your body that you want to remove. It's accompanied unimaginable feelings of doom and darkness. Like a feeling of demons being drilled into your head. It's like the feeling you get waking up from a nightmare multiplied by 10. Adrenaline lives in your hands and in your legs. It washes over your whole body all day everyday. It's unthinkable.

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Mixter

It's so much deeper than anxiety and depression. It's a feeling of terror beyond anything anyone can imagine. A feeling of darkness and terror residing inside your body that makes you need to move your limbs over and over and over. Keeping still is incredibly hard. It's a feeling of screaming from within. It makes you want to scream and scream and scream. You'd do just about anything to make it stop but you can't. You just have to live with it. You feel like there's something in your body that you want to remove. It's accompanied unimaginable feelings of doom and darkness. Like a feeling of demons being drilled into your head. It's like the feeling you get waking up from a nightmare multiplied by 10. Adrenaline lives in your hands and in your legs. It washes over your whole body all day everyday. It's unthinkable.

 

Couldn't have said it better man. I am so sorry for you. I am going thru the same ****. Sometimes it is not bad, but then... no fun!

 

Sometimes I have to resort to "drugs" to reduce it to be able to enjoy some evenings. Codeine and Akineton. Will try Propanolol.

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WinningThrough

Thanks for your kind message Mixter. I am so sorry you are afflicted with this dreadful thing too. I'm glad you get times when it's not too bad.

 

Good luck with the propranolol. I tried propranolol recently. It doesn't stop the movement part and isn't a miracle cure for me but it seems to take the edge of a very little bit. I haven't gone on it because I'm scared to, but I don't seem to get any side effects at all from it.

 

What keeps me going is knowing that this eventually goes.

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andy

Thanks for your kind message Mixter. I am so sorry you are afflicted with this dreadful thing too. I'm glad you get times when it's not too bad.

 

Good luck with the propranolol. I tried propranolol recently. It doesn't stop the movement part and isn't a miracle cure for me but it seems to take the edge of a very little bit. I haven't gone on it because I'm scared to, but I don't seem to get any side effects at all from it.

 

What keeps me going is knowing that this eventually goes.

it will go winningthrough but takes a long time,it has taken me nearly two years but i got there in the end.I kept complaining to the doctors i had an inner restlessness that wouldnt go away and of course they didnt know what it was and just blamed it on anxiety,it took me a while but it eventually clicked it was the drugs causing it

When i was trying to relax and watching  tv etc it was horrendous at times,cbt and mindfulness helped me get through it, as my dosages dropped it started to wear off.It has now completely gone, I still get anxious but that feels very different to akathisia

hang in there it will pass

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WinningThrough

Ah, thanks andy. Awful that you went through this too. We should all get medals for this!! I'm so very glad yours went. Unfortunately I can't get rid of mine by going down in doses as I'm completely off everything.

 

I imagine mine will continue for some time to come until it eventually starts to fade.

 

I really appreciate the support.

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EMT1

Ive just been told that a psych doctor, Dr Joseph Gellegham writes of how akathesia as a result of withdrawal is permanent. Please someone tell me this isnt true and my immense mental torment isnt permanent, that I can recover? Mine started a couple.of.months after my rapid taper. Im so petrified. Please!!!

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Muddles

It won't be permanent. I haven't heard of this being a permanent condition. It will ease for you.

 

Sorry you are suffering this terrible condition. It will pass though. Keep strong.

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Addax

Emt1- 

 

Who told you that someone named Dr Joseph Gellegham wrote anything about withdrawal or Akathisia?  I searched, and not only did I not find anything written about Akathisia or Withdrawal by a Dr Joseph Gellegham, but not even google could find a single person by that name at all.  

 

I know, when in the throws of Akathisia, is feels like it will never end and you forget what it's like not to have Akathisia.  However, from what I've been reading... and at this point I have read a lot... Akathisia DOES NOT appear to be permanent.  I've read articles and such where the author(s) writes that it MAY be or COULD be permanent, but these are non-committal statements and they don't provide evidence to support even their non-committal statements. I've read on other websites where people have stated that they "knew" or had "heard" that it was permanent, but never mention how they knew or where they'd heard it.   

 

Some people may confuse Akathisia with Tardive Dyskinesia, which has been shown to permanent in some people.  While both can be side effects of neuroleptic drugs and SSRIs they are very different.  Making it even easier to confuse the two is that some people use the term "Tardive Akathisia" to indicate that the Akathisia associated with withdrawal symptoms and to differentiate it from a side effect.

 

Perhaps some people assume it's permanent because Akathisia can come as a side effect of a drug as well as while withdrawing from it, so it seems permanent because the expectation is that it would go away if your lowering your dose.  Again, they are two different maladies. 

 

My own experience: I'm just pulling out of a bad bout of withdrawal symptoms that included Akathisia.  It is subsiding... Slowly, but definitely subsiding.  Even with all I've read I had nearly convinced myself it never would.  

 

Like muddles said, it will pass. 

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EMT1

Addax, thank you so.very much. I was also.unable to find said doctor but the fear was ignited by some of shipkos and a few others suggestions that tardive akathesia "rarely remits" as it was described. Along with the severe mental torure, constant state of indescribable terror and panic, agitation and complete restless mind and body, I also have severe dysphoria along with intrusive thoughts, nightmares and a complete inability to feel peace or calm. To say I am in a suggestive state is an understatement, the tiniest notion that this is something I could not recover from is detrimental to my life. I.understand.so little is certain and the predictably is very individual per victim. I had no idea the mind and cns were capable of such torture. Its as though your mind knows exactly what to do to destroy you. I pray every day over and over that my system may find homeostasis again. I would be eternally grateful for.even a 15% lessening of the torment. I keep trying to tell myself to get to one year, something should let up just a little by then...

Im rambling, sorry. Thank you immensely for the encouragement. Things like that help get me through the minutes.

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andy

Addax, thank you so.very much. I was also.unable to find said doctor but the fear was ignited by some of shipkos and a few others suggestions that tardive akathesia "rarely remits" as it was described. Along with the severe mental torure, constant state of indescribable terror and panic, agitation and complete restless mind and body, I also have severe dysphoria along with intrusive thoughts, nightmares and a complete inability to feel peace or calm. To say I am in a suggestive state is an understatement, the tiniest notion that this is something I could not recover from is detrimental to my life. I.understand.so little is certain and the predictably is very individual per victim. I had no idea the mind and cns were capable of such torture. Its as though your mind knows exactly what to do to destroy you. I pray every day over and over that my system may find homeostasis again. I would be eternally grateful for.even a 15% lessening of the torment. I keep trying to tell myself to get to one year, something should let up just a little by then...

Im rambling, sorry. Thank you immensely for the encouragement. Things like that help get me through the minutes.

it goes, it has for me and i was very agitated by it for a long long time but it eventually fades

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EMT1

Thats so wonderful andy, im so.happy for you!! . I am petrified because I CT (3 wk wean) each month has gotten worse and worse :( I am absolutely un functional and have to fight myself from running to the psych ward every day.

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andy

Thats so wonderful andy, im so.happy for you!! . I am petrified because I CT (3 wk wean) each month has gotten worse and worse :( I am absolutely un functional and have to fight myself from running to the psych ward every day.

you will improve ,im not saying it will be easy but it happens overtime in very small doses.Look how many drugs I CT and I survived

Take care

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UnfoldingSky

Akathisia does go away, I had it severely for a long time and it's gone.  It can stay for a while for some but it does eventually clear up.  I've spoken to a number of people who had it and they all had it clear up.

 

Sometimes it simply vanishes one day, like it was never there to start with (seems to happen to people who had an adverse reaction to an SSRI and didn't take anymore drugs after that.)  It's really quite amazing how a person's life can shift so dramatically--into unimaginably hellish states and then *poof* back into the regular world like it never happened.  For other people it recedes over time.

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WinningThrough

Unfolding sky, that message has made my day. THANK YOU! Messages like that keep me going.

 

I can imagine the relief when it stops!

 

EMT I hope you see unfolding sky's message too. I know you are being tormented with this too.

 

I had mine from a reaction to ssris but unfortunately I took further drugs so I don't think I will fall into the suddenly stopping category but you never know! It could happen!

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btdt

Joseph Glenmullen 

https://www.google.ca/search?q=joseph+glenmullen&oq=joseph+glenmullen&aqs=chrome..69i57j69i59j0l2.9820j0j1&sourceid=chrome&ie=UTF-8#q=joseph+glenmullen+akathisia

 

Did write some of the best early books about antidepressants. Has a website and videos ect. I have not looked at the new blog seems there may be a new definition for the word other than what I understand it to mean... whatever... 

rewriting a difinition is not going change my life any.

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btdt

Was constant a very long time... 

then came and went... 

now can come with a drug reaction of which I have many from hypersensitivity from taking the previous drugs... it remains a big obstacle  in my life in part because doctors refuse to believe I am hypersensitive so I appear to be non compliant or crazy as the reactions are not something like a rash they can see

  and scares the crap out of me.... very scared of drugs because of it. 

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btdt

I don't know if I am just a freak or what but I am reading the things suggested to help at the blog... 

CALM twice a day

Vitamin B6

beta blockers (propranolol) is the one listed not the one I reacted to

lorazapam (paradoxical reaction - did the opposite of what was expected)

 

From the blog:

" phenobarbital that actually does seem to give me some short term relief"  

I am thinking of how to respond to this one ... very dangerous drug...thinking it over.. still think most drugs will make it worse was my experience and did not take this or anything like it ...but have a migraine med with something like it... later after I sort the thoughts on it... did not take it at the time... and don't want to go there now. 

 

 

I tried to read it all but I can't do it... still not well enough and still medicated even at a lower dose I feel the effects of a pariet.  

I am trying other means to control it acid stomach and side effects.  

Taurine 

licorice 

aloe vera juice 

all from the health food store. 

 

I think I am one of the rare birds who can't take anything. 

I would be curious to see if Taurine would help with akathisia but would hate for anyone to be made worse so fall short of suggesting anything.  Calm reacts on me as does magnesium Vit D and B vit too... and a multitude of other things. 

Not sure I have added anything to this topic really as it boils down to don't take anything... the price is too high. BUT if something did work and not have a rebound effect what heaven that would be I know the desire to find something I have lived it... I also know the hell when it back fires and I slide further down to hell.  

It has been those time of further slippage when I was most at risk of suicide as at some points I was actually quite nuts and could have done anything... I guess the other word for nuts the respectful word would be psychotic. 

I once jumped over a fence in a psychotic state... yes a short 40 something woman jumped a fence... lots of people around too I did not care I needed to move and the fence was in my way. 

Please be very very careful with anything you take ANYTHING  start very very low in dose and stop completely at the first sign of trouble don't second guess yourself.  

Even if what you have taken made you feel better to start with it can turn in a couple of days or wks... I had this with vitamins twice... 

once with a B concoction from a health food store once with magnesium... both of these helped me feel better to start with but turned on me.  At the time I was in the learning curve and thought I was just having a bad spell that would pass and maybe I even needed to increase the dose ... I was wrong.  Both times I was wrong the supplements just turned on me and akathisia came back worse almost immediately.  I took several wks to get back the ground I had lost.  Low dose go slow with anything you try. 

1/6 of the dose has been suggested and this is what I do until I have tested something a good while.

peace all 

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UnfoldingSky

Unfolding sky, that message has made my day. THANK YOU! Messages like that keep me going.

 

I can imagine the relief when it stops!

 

EMT I hope you see unfolding sky's message too. I know you are being tormented with this too.

 

I had mine from a reaction to ssris but unfortunately I took further drugs so I don't think I will fall into the suddenly stopping category but you never know! It could happen!

 

No problem  Winning!  And you are right, it may well stop abruptly for you too.  It didn't happen that way for me, mine more mutated then died away, but nonetheless it is gone AND I took many drugs that caused it.

 

Frankly it's a miracle I am even alive, let alone akathisia free.  You'll get there too.

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UnfoldingSky

btdt, initially in withdrawal during the acute phase I couldn't take anything, if you so much as looked at me it seemed I got worse (I was on drugs at the time though, but only really because I couldn't get off them; they were not helping).    You make very good points about being cautious about trying new things and about taking only a fraction of a dose.

 

Also, given that many of us have had supplements turn on us after a short period of use, particularly in the early withdrawal stages, it makes me wonder if maybe we shouldn't be anticipating this and capitalizing on it.  I.e. If people feel they must try something, maybe they really should only take it for a max of three days and then stop, regardless of how they feel.

 

I am really curious to know (and not that I want someone to be a guinea pig on my behalf, please don't take this that way) if in doing this we might not actually be able to acclimatize our bodies to something, ie take it a bit then lay off then take it a bit and lay off again.  If anyone has tried doing this, not just for akathisia but for other problems, please post your results.  Although come to think of it most of what I took when I had akathisia I believe I reacted to pretty quickly (except a needed stomach acid supplement that I never had an issue with)...so maybe that answers my question. 

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btdt

I wonder if you did react to the stomach acid drug and thought the reaction was psych so blamed other issues... as it is for me a psych issue... messes up my head among other things I can't think straight even on the low dose. 

 

I reacted to most thing right off the bat low dose going up.  I not too keen on the aclimatizing our bodies to drugs we likley don't need... only reason to take a lower dose is if and you do have a reaction maybe it will be less intense or last a shorter time...

lessen the pain so to speak. 

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btdt

For me my body is now boss I have no choice in this if it doesn't want it or can't use it why aclimatise it... forget about it and get on with some alternative. What I tried when I was in the thick of it did not work for me as supplements or drugs go.  Short term relief was just that and had a rebound effect.  

For instance after 3 days of not sleeping I would go nuts and not be able to think right... I would try a small amount of kids gravol an antihistamine or a teeny bit off a antihistamine benadrl but then after I would find the ground I had gained fighting would slip away from me for having tried these... so I would fight like hell...lay in bed and try to be still or just move some parts or get up and do something like bake muffins... cause it seemed to me by getting the sleep I needed I was going backwards in how badly I felt as in negativity ect. 

I am having some type of nervous cognative reaction to acid ppi drug pariet I am using taurine to treat it when the jitters get the better of me... so far it seems to be working only using it when I really need it for the same reasons stated.  

I don't think what I have now could fairly be called the aka we all know and hate... but if not nipped in the bud perhaps it could I am not going there again. 

Another thing I have learned from other at another site is this...supplements you could not take early on because of a reaction how you react will sometimes change for some things... I had a paradoxical reaction to both benzos and mag... early on... now I don't react to mag like that I just lay down and don't or can't get up.  I have not tried a benzo since the paradoxical reaction of pacing constantly for 3 days. 

peace all

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UnfoldingSky

I wonder if you did react to the stomach acid drug and thought the reaction was psych so blamed other issues... as it is for me a psych issue... messes up my head among other things I can't think straight even on the low dose. 

 

I reacted to most thing right off the bat low dose going up.  I not too keen on the aclimatizing our bodies to drugs we likley don't need... only reason to take a lower dose is if and you do have a reaction maybe it will be less intense or last a shorter time...

lessen the pain so to speak. 

 

Oh no, in my case it wasn't a drug, it was a supplement. I feel sure it helped, as I was actually not producing almost any stomach acid (I still am not sure why, I'm the only person I've heard of this happening to because of psych drugs.) I was losing weight, and I was eating probably twice as much as usual, it was getting to be scary.  The supplement made it so that I could actually digest the food.  Without it I probably would have wound up in the hospital eventually. 

 

I also don't think we need to acclimatize to drugs.  I meant more like supplements that might help, or herbs.  Sometimes later on I'd take something and it would help only to backfire, so I thought maybe if I had done a short course and just stopped I would have been better off.

 

Who knows, I certainly am not going to volunteer to go back in time to see if it would work, lol. 

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UnfoldingSky

For me my body is now boss I have no choice in this if it doesn't want it or can't use it why aclimatise it... forget about it and get on with some alternative. What I tried when I was in the thick of it did not work for me as supplements or drugs go.  Short term relief was just that and had a rebound effect.  

For instance after 3 days of not sleeping I would go nuts and not be able to think right... I would try a small amount of kids gravol an antihistamine or a teeny bit off a antihistamine benadrl but then after I would find the ground I had gained fighting would slip away from me for having tried these... so I would fight like hell...lay in bed and try to be still or just move some parts or get up and do something like bake muffins... cause it seemed to me by getting the sleep I needed I was going backwards in how badly I felt as in negativity ect. 

I am having some type of nervous cognative reaction to acid ppi drug pariet I am using taurine to treat it when the jitters get the better of me... so far it seems to be working only using it when I really need it for the same reasons stated.  

I don't think what I have now could fairly be called the aka we all know and hate... but if not nipped in the bud perhaps it could I am not going there again. 

Another thing I have learned from other at another site is this...supplements you could not take early on because of a reaction how you react will sometimes change for some things... I had a paradoxical reaction to both benzos and mag... early on... now I don't react to mag like that I just lay down and don't or can't get up.  I have not tried a benzo since the paradoxical reaction of pacing constantly for 3 days. 

peace all

 

Sorry to hear of the PPI reaction btdt.  Hope things turn 'round for you soon. 

 

I haven't tried magnesium again since way back in the day, I wonder now if I could tolerate it.  I can now tolerate sugar and caffeine without going totally off the rails (though with sugar maybe more than caffeine it does kind of get to me, as in makes me foggy-headed a bit; but it's a far cry from akathisia and crushing DP/DR), so maybe I can tolerate mag now?  Not sure if I should try.  I would however never touch a benzo ever again.  I can't say I blame you for not wanting them either. 

 

Oh and I can tolerate a number of herbs again, and this has been improving even more lately.  At one point I had super weird (though short-lived) reactions to them. Now some of them actually help.

 

Oops, I am wandering off-topic...

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btdt

I have used fennel for stomach issue think it helps I tried mag again to see an could not get up.. that was this past year... just to see.  Early on my reaction was the opposite of calming within a wk of taking it. Now it just lays me out I can't get up. so some changes have taken place but not to the absolute normal as I still don't get calming like I did when I first tried it long ago... I get laid out.  When I first tried it I was so happy thought I have "IT" a few days later I was off the walls again even worse. That is how it goes... crazy ****. 

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UnfoldingSky

Sorry to hear that.  Maybe I'll skip the magnesium too then.  I have a herb I take sometimes that has it in it which is cooperative to a degree, I never seem to react to it, at worst it only helps marginally.  Usually it's helpful though.  I took a break from it for a bit though, as it has iron in it and I am not sure I'm processing that too well at the moment.

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WinningThrough

Angie has created a new forum for akathisia sufferers, those who have recovered from akathisia and carers of akathisia sufferers:

 

http://akathisiainfo.freeforums.org

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Altostrata

Good for her. That blog was getting a lot of comments.

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Wildflower0214

Well,

I went and signed up for that blog of Angie's. I think it will be useful. About three months into WD I started getting the vibrations, electrical shocks, crawlers, and restlessness accompanied by insomnia.

 

It comes and goes in severity, and I have had a whole day almost without it. So, I believe that is a good sign. It is showing its weakness.

 

I have found eating pineapple useful, because of the b6. For those of us who cannot supplement at the moment. It has helped me significantly.

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