Wilting's Akathisia Nightmare

[Wilting]

I've come across what Fresh said on another thread "The thing about withdrawal is this:  you think you've had it as bad as it could ever get , until it goes to a whole new level." - referring to akathisia. How I wish I'd known it last autun...

[Wilting]

Your not alone. Ive been hammered with this symptom in its worst form. Seems to be stimulated by things I try to do to help myself. Hot bath, massage etc... It can't last in severe form.

how long have you had it?

[Fresh]

Hi Wilting , my computer seized up , am just back now.

I wrote a bit today about how my akathisia shifted ... first it was more physical , and I was

taking lots of meds. to try to keep it at bay.

Three days after I stopped all meds (valium , normison , catapress , endone , codeine, xanax)

it exploded into the mental torment / anguish. Another level entirely.

 

There's a thread on akathisia here http://survivingantidepressants.org/index.php?/topic/9311-akathisia-nightmare/

Perhaps we should start a new thread specifically about akathisia in Symptoms and Self care?

[Mort81]

Ive had it off and on for 20 months. It always comes from other things. I had it worst than ever in last month from a friken massage. Im on a Benzo and have been for awhile. I can't taper it yet as I'm still in a heavy ssri withdrawal. But the benzo does help me with it. But I don't recommend anyone getting on a Benzo. Unless u absolutely have too and dont take it regularly. But I think try everything else first.

[Mort81]

It's gonna let up. It has too. Even people who have it for long periods of time say the intensity drastically reduces

[Mort81]

I think it went away for a few months for me than came back. I had it 2 or 3 weeks ago in severe form. It lasted 1 week than went away for 2 weeks until it came back yesterday. And today. Its the worst of all the WD symptoms no doubt

[UnfoldingSky]

UnfoldingSky, thank you... I read about the weighted stuff before but it wouldn't help, this outside stuff, when this impulse goes so strong from within. I'd just kick it away.

 

Can you read books and watch TV now?

 

Did the benzo actually take the A. away or just dampen its symptoms but you still felt the A. underneath?

 

How long did it take for your akathisia to go away and did it go away abruptly or gradually?

 

Hi Wilting,

 

I understand about the blankets. 

 

I can read books and watch TV now, yes.  I can sit for long periods of time and not feel restless at all.  You will get there too! 

 

My benzo experience was a disaster.  They made the akathisia worse in some ways over time, as they would wear off I'd be super agitated, not able to sit down to eat, and during the day I'd often be crying (usually at least three times a day), all from how the drug was making me feel (like I was in a state of terror.)  We have a term for that here, neuro-emotions, which are hyped up emotions the drugs cause--well I was in a very profoundly negative state of mind all the time I was on the drugs pretty well.  They also caused severe memory loss too.  And other problems.  I do very much wish I had been told not to take them every day for longer than two weeks, as after that you can become dependent...and once that happened to me it was extremely difficult to get off them (didn't help that the pill I took was the size of a dot, so very difficult to cut--which meant at one point I got stuck on it for a long time just because I could not figure out a way to cut it any further.)  If I had to do it again (please, no) I'd have tried very hard to stay away from adding more drugs, but I had no idea what was going on really, and by the time I figured it out they had already injured me further with them.  After I was stuck on them I also found out that some people react badly to them who take them for akathisia, they can go paradoxical very quickly for some it seems and not dampen the akathisia in the least.  So I'm quite upset I was not told that either.

 

As for how long it took to go away, basically it was gone once I tapered off the benzos. Since they greatly exacerbated it, it took a long time to go away.  Had I been drug free I feel I would have recovered much faster.  I was terrified I'd have it after I was fully off them but I was actually better once off them, even though I'd had withdrawal akathisia in the past from other drugs.  Since that time I've not had a recurrence either, and that was years ago that I stopped the benzos.

[UnfoldingSky]

Hi again Wilting,

 

I just thought I had better emphasize for you and others reading here who are new to the site who have akathisia too, that my situation undoubtedly was made so much worse by the addition of benzos (and at least one other drug) to treat the problem, I don't want anyone reading to think if they are drug-free that it's the same as being on a drug that is causing the situation to worsen, in terms of recovery times. I don't want to go into all the details of everything the benzos did to me as it would be needlessly upsetting, but I feel sure that they did drag out the recovery time quite a lot, there was no doubt I was not managing to tolerate them very well. 

 

And the people I have spoken with who had it had varying recovery times as well.  I dearly wish we had some way to pinpoint how long each person's recovery from it would take but it seems if there is a way no one has come across it.  Don't lose hope though, people DO recover! 

[Wilting]

thank you guys...

It's so horrible to wake up to this every morning... and then it hits you with the same force...

[Bruin]

How was your weekend Wilting..?...just hoping you have got some relief and am cheering you on. 

My brush with Akathisia was relatively short lived but it has not completely gone away. 

I am undertaking a longish  flight on Wednesday and I am not sure how I am going to stay still ! 

 

all the very best to you.

 

Bruin

[mammaP]

Hi Wilting , my computer seized up , am just back now.

I wrote a bit today about how my akathisia shifted ... first it was more physical , and I was

taking lots of meds. to try to keep it at bay.

Three days after I stopped all meds (valium , normison , catapress , endone , codeine, xanax)

it exploded into the mental torment / anguish. Another level entirely.

 

There's a thread on akathisia here http://survivingantidepressants.org/index.php?/topic/9311-akathisia-nightmare/

Perhaps we should start a new thread specifically about akathisia in Symptoms and Self care?

There is one here Fresh,  not sure when it was last updated!  http://survivingantidepressants.org/index.php?/topic/32-akathisia-vs-restlessness-anxiety-agitation/page-1

[stan]

i had tardive akathisia," mild" akathisia after finished my taper, then severe from month 9 to 15 ..., then it last months and months less severe, after several years i thought it was gone, big error, i have it still after 7 years off any med but very "mild" compared as before, it moved in something such as nerves itching with anxiety

the people who had it still strong after 5 years are people who were trying to cure it with benzo, propanolol and a few other medicine, from what i read,

i think the only way to diminish it is to take no medicament, wait, and try to be calm, time is the only healer in my opinion as many people tell it

today i have what we can call "residual akathisia", it want not go 100 % away (can look tv...)

[Wilting]

Thank you for your replies guys...

stan, I've seen your posts on akathisia on other forums.

 

I still have horrible unrelenting akathisia every waking second. There have been no improvements in the aka. since it started on March 1.

I'm typing standing up right now and rocking my trunk and bending my legs at the knees.

I eat standing, bending over the table, and walking after every bite, or walking with a plate.

In between, I walk to and fro incessantly, writhing, twisting my legs and feet, shaking my hands. I can barely do anything else.

I can't sit down during the day. let alone lie down.

I cry many times during the day, desperately. I feel like my CNS is damaged beyond repair and it's not repairing, it's stuck now in this horrible state that's killing me slowly. May 1 is Orthodox easter, perhaps God will hear my prayers?? Please God let me die in my sleep!!!

[apace41]

Wilting,

 

I know this will be the hardest thing you ever do, but you WILL get through this. Look at Fresh's thread and see how bad she was and she has recovered from it completely. It's just a matter of time. You will start to get relief even though it doesn't feel like it now.

 

Just hang in there. We are with you.

 

Andy

[Altostrata]

Hello, Wilting.

 

mammaP had excellent suggestions -- have you tried a tiny dose of mirtazapine for at least 4 days?

 

 

 

You took some mirtazepine for 2 days and it didn't help. It takes 4 days to get a steady dose in the bloodstream so maybe if you tried for longer it might help eventually. How much did you take? 

I took the full dose i had been prescribed, 15 mg

I was afraid to experiment longer afraid to ake it worse

 

 

 

I see, that was too high after being off since early March. Try taking a very very tiny dose, 1mg if you can measure it so small. Take it every day and if it helps  you may be able to stabilise on that amount, hold for a few months then start to taper again. Side effects are dose related so you might not have the same side effects at such a tiny dose.  Hopefully it will help. Many people have relief from symptoms after such a small reinstatement and hopefully it will help you too. 

 

As your akathisia started when you reduced mirtazapine, it is a withdrawal symptom from mirtazapine and may remit if you add mirtazapine.

 

This topic explains how to take a tiny dose Tips for tapering off Remeron (mirtazapine)

[Wilting]

Thenk you so much for your suggestions, everyone.

But i'm afraid it's not so easy

I think that my akathisia (the mental kind - the terrible anxiety and terror) started while I was on venlafaxine last October, only I didn't know what it was

And then taking and tapering mirtazapine turned it into the full-blown akathisia, it's not just withdrawal from mirt

so it doesn't make sense to me to take mirtaz again it could make it worse and e.g. trigger dyskinesia or dystonia. There's a story on a guy somewhere on this forum, Josh Jensen, who developed acute akathisia on Effexor and was given more drugs for it and now in addition to tardive A, he also has dystonia and it's been like that for a couple of years already.

[Wilting]

Look at Fresh's thread and see how bad she was and she has recovered from it completely.

 

 

Fresh went to hospital and was given medication for it, im horrified of medication for the reasons i said above, besides there's no medication for tardive akathisia which is obviously my case.

Besides ii'm in such bad shape i dont think the more "normal" memtal hospital would take me considering the bad shape i'm in - i can't even sit down for a meal, i stand and pace while eating

And the other hospital we have, they feed their patients nothing but bread and water, literally, because of very bad funding.

And tie them to beds and leave them to rot in their own filth, that's what would happen to me - they would tie me down to stop my pacing.

(And they get away whit all this for decades because nobody cares )

I dont see a way out, it's been 2 months of this hwll and it's just as bad, even worse becase i'm more and more exhausted

[Shep]

 

Look at Fresh's thread and see how bad she was and she has recovered from it completely.

 

 

Fresh went to hospital and was given medication for it, im horrified of medication for the reasons i said above, besides there's no medication for tardive akathisia which is obviously my case.

Besides ii'm in such bad shape i dont think the more "normal" memtal hospital would take me considering the bad shape i'm in - i can't even sit down for a meal, i stand and pace while eating

And the other hospital we have, they feed their patients nothing but bread and water, literally, because of very bad funding.

And tie them to beds and leave them to rot in their own filth, that's what would happen to me - they would tie me down to stop my pacing.

(And they get away whit all this for decades because nobody cares )

I dont see a way out, it's been 2 months of this hwll and it's just as bad, even worse becase i'm more and more exhausted

 

 

 

I'm very concerned about your comment "I don't see a way out". Akathisia has a strong correlation with suicide, so this is not something to gloss over.

 

Please let us know you are okay. Altostrata mentioned taking a very, very tiny dose of mirtazapine and you mentioned the fact that venlafaxine may be the root of your akathisia. This is good information and something you can work with. 

 

However, if you do want to ride this out without medication, it's possible. I'm drug free now after 30 years of massive polydrugging, and akathisia was one of many withdrawal symptoms I survived. For the first few years of my illness starting at 17, I was in and out of both private and then state hospitals due to drug-induced psychosis, so I know the environment you're talking about. Inner city state hospitals like the ones where I live are not easy to survive, but that doesn't have to be the path you take. Don't project that future onto yourself. 

 

You've asked what helped other people with akathisia. For me, all my symptoms were a gateway into mindfulness and this is the very first video that helped me relax with some of the most intense psychotic symptoms I had:

 

https://www.youtube.com/watch?v=uZaCnyMN-Zw

 

You can feel a tremendous amount of nervousness in the body and be totally free. 

 

This is very, very true. If you can distract with these types of meditations, with an old favorite TV show, by walking in nature (if you can't go outside, looking at videos of nature can help), etc.  The point is to let your body go through the intense pain of akthisia and let your thoughts go in a different direction. This will really help with the exhaustion factor. 

 

But know that it will pass.  None of what is happening to you is your fault. There's a pattern of self-blame in some of your posts, but you're no more to blame for this than I am or anyone else is.  You are only 39 years old - you have many years of drug free happiness ahead of you. You just need to survive this phase. 

 

Please let us know you are okay. 

[Wilting]

Thank you shep,

but this damn thing is unbelieavably strong, I can't find any distraction or relief in anything for a second! This is why the thoughts of that way out are with me every second of every day, i read posts where people have akathisia in waves or not as strong and can at least do some normal everyday things, not my case alas.

 

Like I said i've come to the concnlusion this is not withdrawal akathisia but tardive akathisia and as such there's no hope also as evidenced in the writings of Shipko, Breggin etc.

 

i know it may sound annoying to some because all i do here is complain but there's nothing i can do at this point and i need to unburden to someone except for my parents whom i've subjected to enough of this already.

 

And may be if someone who's taking antidepressants or wants to take them reads this it may serve as a warning!

Edited May 1, 2016 by Wilting

[Shep]

Thank you shep,

but this damn thing is unbelieavably strong, I can't find any distraction or relief in anything for a second! This is why the thoughts of that way out are with me every second of every day, i read posts where people have akathisia in waves or not as strong and can at least do some normal everyday things, not my case alas.

 

i know it may sound annoying to some because all i do here is complain but there's nothing i can do at this point and i need to unburden to someone except for my parents whom i've subjected to enough of this already.

 

And may be if someone who's taking antidepressants or wants to take them reads this it may serve as a warning!

 

I hear you. This entire website should be required reading by anyone thinking of taking these drugs. 

 

But if you can distract those thoughts of "I don't see a way out" to something else, over time, this will serve you well. Trust me, it doesn't happen overnight but it will happen in time.

 

And this is the type of coping skill that you can take away from this experience. It's good armor against any other struggle you have in life in the future. That's the golden take away. These are the kinds of thoughts you can use to replace any other negative ones. 

 

Thanks for your post. It's good to know you're hanging in there with the rest of us. You're going to get through this, and we're here right with you. 

 

I hope you get some relief soon. 

[Bruin]

Wilting......am just stopping by to cheer you. Shep is right and you are going to get through this. 

I write as someone who has frequently gone to the no hope position.........I know too well how that goes

Somehow something gets me through and it will be the same for you. 

 

Sending best wishes and hoping that you get a break soon

[Altostrata]

A very small amount of mirtazapine may help. It is very unlikely to cause dystonia.

[Wilting]

For about a month, sleep was 4, sometimes even 5 hrs. But slept all of 20 min last night...great.

[Altostrata]

You can either cope with the withdrawal symptoms, which will very gradually fade with time, or you could try a very small reinstatement.

[Vonnegutjunky]

thank you Kiwi... so is your akathisia gone?

 

And the question for everyone who had A. but it went away: how did it happehn? Gradually or you woke up and it was gone?

 

 

I was also hit with a number of physiological changes that make me feel my body is strange to me... I feel like my arms aren't really mine (I can't think of a better way of saying it); I feel like there's something heavy in my brain behind my eyes; my cycle stopped completely; I sweat less; I don't like the feeling of the water on my skin (and I'd always loved to shower before, now it just feels weird); to name just a few. Has anyone had any weird physiological phenomena /feelings accompany akathesia?

 

99 percent of my akathisia was mental just like this- just feeling so weird! I was looking at my arm the other day I the car and I felt as if I had no peripheral vision, amdasif my arms weren't mine- ugggh I still have akathisia but it's much muchless intense - I first got it last May from doubling my dose of Paxil during withdrawal- it gets better with each reduction but has not gone away-

 

Last year I was not functional, I would lie in bed and pray for cancer, I quit working and have been bedridden for a year

 

I emailed my boss last week to go back to work in the fall- yep with time it gets better

 

Last February was my first real window after 5 months of tapering my medication

 

And now during Windows I feel fine

 

Just remember,you always think things can't get worse - they can- stay away from any new Meds - your cns is too unstable right now for new Meds

 

And you are not josh Jensen - don't use him as an example- he is an extreme atypical case -

And STOP talking and worrying about tardive - that permanent stuff is so rare that it's not worth mentioning or worrying about -none of this is permanent, unless you have had a physical traumatic brain injury that your not talking about, you will, like all of us, heal from this - its just a really slow walk through hell - sorry your here but your not alone ❤️

[ihadakathisia]

Also Eastern Europe here.

 

Also pretty horrible akathisia. Which is worsening.

 

I'm very sorry for you.

[KT38]

How are you doing?

[Annabee]

How are you wilting ??

[Biloelagirl89]

On 4/18/2016 at 7:29 PM, Wilting said:

I want to share my story here... I only wish I had done it last autumn, may be someone would have warned me then about the danger...and now it's too late...

 

I'm a 39 y,o. woman living in Eastern Europe. Several years ago I "diagnosed" myself as very depressed using (I think) Beck's depression scale etc. in the books. Now it's glaringly obvious to me that my "depression" was caused by physical health problems, a lack of adequate rest and outside circumstances (job- and society-related) and antidepressants were NOT the way to go...

 

So in 2010 I started taking Paxil, took it for 3 months and had to stop because it gave me IBS. I'd read it somewhere that withdrawal from it could be difficult but I got off relatively easily. In the next months my psychiatrist had me take Melitor, Amitryptiline and Clofranil one after the other; I shudder at the thought now, but I was able to take them then with some, but not significant side effects. I thought I "needed" the medication, and this belief was supported by the assurances in the materials I've read that some people need to take ADs for a long time. I thought of them as medication!

 

In 2012, after a few months' break, the psychiatrist prescribed venlafaxine. Which I took for 3 years! I can't believe my own stupidity now... What was I thinking??? I did read that it was hard to get off of, like Paxil, but since I got off Paxil I thought I'd have no problem getting off Venlafaxine too...Even though I felt progressively tired and joyless, I thought I'd feel too bad without it. Besides, it was hard to reduce the dosage: even a 1/16th cut made me feel sick for a few days. But I thought I'd get off by the end of 2015.

 

However, in October 2015 I fell ill with IBS, loss of appetite, nausea and terrible anxiety the likes of which I'd never had before: it was as if every thought, every object was terrifying! I couldn't watch TV, even cartoons, or listen to the music, or do much except for lying in bed, almost paralyzed with fear, with shaking legs and arms.

 

After a while, I thought that venlafaxine was the problem and decided to stop taking it, even though the psychiatrist was baffled and said Iwas just too sensitive to it. So I tapered it as I could in 3 weeks and got also hit with withdrawal symptoms (brain zaps, dizziness), which, however, subsided after a few weeks.

 

However, the rest of the symptoms persisted for 2 months; I found another psychiatrist who prescribed mirtazapine; and though I didn't want to take another andidepressant at first, I caved in and started taking it at 15 mg in December. I believe that was the second biggest mistake in my life after deciding to take any ADs at all! But I was told it would relieve my anxiety and bring my appetite back.

 

My anxiety lessened and the appetite returned (too much of it, in fact, I started overeating), but I felt very tired all the time and my muscles trembled. So I started tapering it in February and by 1 March I got to 3,75 mg. And on 1st of March I got up in the morning and felt I wanted to run to and fro and stomp my feet! I couldn't sit still, or lie down. Terrified, I started searching for the symptoms and found out it was akathisia. And unfortunately, I got the severe form. I have to pace to and fro all the time, wring and shake my hands, shake my head, kick my legs, I can't stay seated and I have to type and eat when standing; and I can't concentrate on anything, when I take a cup to drink I take a sip, put it down and I have to walk away and then come back etc. My sleep is awful, I get a few hours now, 5 at most, mostly it's about 3 - and I don't know how I'm still alive, I'd always needed 7-8! And this horrible relentless agitation, which doesn't let go of me even for a minute... And my skin burns in different places all day long, and mu muscles have this kind of itch which makes me move them all the time! I can't cook, or go shopping, or go outside at all except for a few minutes because I need to move this way all the time or I feel even worse!

 

And when I strated searching for help I found out to my horror there were no specific medications to treat akathisia, and the ones that are suggested can aggravate it! I also found a lot of information on psychiatry that I wish I'd found before all this... but now it's too late to be useful to me... I don't know what to do, my case isnt' typical unlike most people who get akathisia from neuroleptics... I stopped taking mirtazapine on 6 March but the akathisia continues in full force... I think of killing myself every few minutes, if only I had known that Ads could cause something like that I would have stayed the hell away from them!!!

My story is pretty much exactly the same, how long u had this???????