Any tardive akathisia success stories?

[Rbvdk]

Any tardive akathisia success stories?

 

Thought this might be a really nice post of hope for a condition that is usually seen as very hopeless. 🙂

 

I've seen a few people successfully heal from acute akathesia by changing their dosage etc. But was wondering if there was any success stories on tardive or withdrawal akathesia, especially for those who aren't even on meds anymore?

 

Also if anyone has been in a similar position as me - I haven't been on any drugs since 2018, but I smoked weed for a few days in June 2021, then I was suddenly hit with akathesia 3 months later (I've never even had akathesia before).

Edited November 29, 2021 by manymoretodays
merged from Success Stories, added title member had given

[manymoretodays]

Hi Rbvdk,

And I did find this topic,

Blog: My akathisia experience by akathisiainfo

It does seem to document recovery from akathisia and is hopeful.

 

Meantime, I'll leave your recent query here, in Success Stories for now.

(I've been moving it around a bit, seems okay here, for now)

 

Sometimes I think that many of those who have healed from their symptoms, may not be around much anymore.

We'll see.

 

And best,

L, P, H, and G,

mmt

 

 

[DaBro]

@Rbvdk  I came out the other side. My Akasthesia (and TD) came from nowhere about a year after quitting SSRIs. It was so severe initially that I had friction burns on the top of my feet from movements in my sleep and my wife considered calling an ambulance. I saw a psychiatrist over it (he didn’t know why and gave me some BS cause about return of initial symptoms) 3 years post zero I occasionally get the odd mild shake and urge to squirm around for a minute or so at bedtime, but that’s all.
 

We heal. 

[mva96]

I had aka when I came off Lexapro for about 6 months, it was at its worst at like 9 months off then it eventually went away. 

[Heal95]

I didn’t know it was tardive dysenisia but around 3 months into withdrawal i was uncontrollable gurning expression I kept doing. I tried stopping but it was involuntary. It comes and goes now. Every time it comes back I feel so disheartened but the fact that it goes gives me hope it will stop eventually 

[trenace]

I haven't healed yet but my akathisia hit me like a sonofab***h at a year off and stayed for a year and left and didn't come back even after setbacks. 

[Rbvdk]

On 11/29/2021 at 11:36 PM, manymoretodays said:

Hi Rbvdk,

And I did find this topic,

Blog: My akathisia experience by akathisiainfo

It does seem to document recovery from akathisia and is hopeful.

 

Meantime, I'll leave your recent query here, in Success Stories for now.

(I've been moving it around a bit, seems okay here, for now)

 

Sometimes I think that many of those who have healed from their symptoms, may not be around much anymore.

We'll see.

 

And best,

L, P, H, and G,

mmt

 

 

Thank you so much!

 

Take care 🙂

[DazzlingCold]

Not sure if Im experiencing akasthesia, but last night I used the TENS machine for neck pain and I think it may have helped a little as my focus is on the sensations in my body were on the part stimulated by the machine. 

[Morgan]

Is Tardive Akathesia and withdrawal Akathesia the same thing? 

[PortugueseSea]

On 9/15/2022 at 3:02 AM, Morgan said:

Is Tardive Akathesia and withdrawal Akathesia the same thing? 

Not the same thing but can become the same thing for some specialists. If your withdrawal akathisia doesn't go away within 6 months it is considered tardive from then on.

Mine is on the borderline given that my last dopamine antagonist dose was in April.
It could be acute because I'm on Mirtazapine but given symptom timing that's unlikely.

[PortugueseSea]

Came here to share happy news;

 

A dear friend who has had tardive akathisia for 5 to 6 years has virtually healed. Only having an occasional episode once every 3 months. It is good news beyond hope as she struggled immensely!

As for myself, my agitation has settled down to the point where I think it might be just physical fear or activation. My terror/fear is quite overwhelming but, given the circumstances, I am not surprised.

 

I take all this as my brain slowly rebuilding the right pathways!

[PortugueseSea]

Also, wanted to drop this post here.

 

On 3/25/2019 at 1:45 AM, Rosetta said:

If you are feeling something that you think might be Akathisia please know it does go away.  Please don't worry about whether it is Akathisia or not.  I have learned that it doesn't matter what it's called.  I used to worry about whether is was or wasn't Akathisia and whether it would go away.  It will.  There are many different definitions for Akathisia and there are many different intensities.  There might be a continuum from anxiety to Akathisia.  It does not matter.  

 

The problem is that our language does not have words for that feeling that are universally recognized as describing Akathisia.  Each person would describe it differently.  "Intense anxiety" is the best we can do, usually, but that does not really describe it.  Some intensities create the absolutely most desperate feeling and others do not.  However, for me, the mere indication that I'm getting Akathisia causes me to panic.  I have to remind myself that it does not get super intense every time.  I have read the thread on Akathisia here and it did not help me to cope with it because distraction from it is the only thing that helps.  I have to distract!  Having a hot bath helps or a hot shower.  Showers are probably better at relieving the feeling.  Sometimes I have a hot Epsom salt bath and then I get in the shower afterward.

 

I'm so sorry you are suffering through this.  I'm also very glad you found SA.  Many people never know what is wrong with them and their doctors do not tell them that they will heal because the doctors do not know.  It's really awful to sit in front of a "psychiatrist" and be told that whatever mental condition one is feeling is a permanent worsening of the original condition.  That happened to me after I quit Zoloft.  He couldn't have been more than 30.  He had years and years of medical training, but zero understanding of his profession, real practical medicine or psychiatry.  He did not recognize a physical condition -- dysautonomia -- as I sat in front of him.  He didn't ask the right questions.  He didn't even know what to ask.  He prescribed me Trazodone, and, of course, my condition only got worse.  He was so very, very wrong.  I am sooooo much better now, my personality is back much of the time, and I have learned to cope with Akathisia.  Simply knowing what it is, not letting the doctor tell me my feelings are not real, and knowing that it will go away helps me a lot.  I hope it helps you, too.  

 

Your physical and emotional are connected to a physical disorder.  It is not all in your head.  It is a physical disorder that your body and brain are capable of healing.  I find it absolutely miraculous that this is the case, but it's true, and I know because I am living it right now.  This is temporary, Johnny.  Temporary.  You can make it through.

 

[NardilTime]

I have a tardive akathisia success story. 
 

I was on Effexor for about 10 years when I started to have adverse effects. I didn’t know what they were (inner restlessness, feelings of impending doom) so I assumed it was mental illness. The psychiatrists started switching my medication around, adding pills subtracting pills, the standard care. Made me far worse. Eventually I stabilized and wanted off everything. I was only on Effexor at the time and my doctor told me to go off over the course of 6 weeks. I reduced and eventually discontinued and seemed fine for about two months. In the middle of October I woke up one morning and everything exploded. I was in full blown akathisia. I restarted the medication two weeks later but that didn’t provide any relief. I had full blown akathisia for close to a year. Pacing, sitting and standing constantly, it was torture beyond what I thought a human being could withstand. I ended up hospitalized for a month. Eventually the akathisia went away. Within a few years of my hospitalization I did a proper taper and got off all the drugs. While I’m still in withdrawal, I have not had a recurrence of akathisia. So, in sum, I developed tardive akathisia from longterm Effexor use and polydrugging, followed by a too fast taper, and I healed. Hope this can help someone who is suffering. 

[Morgan]

After 3-4 months, my acute akathesia seemed to have resolved. My akathesia began around 2-3 months after stopping my SSRI, but I now believe it was withdrawal, not tardive. 
 

I’m currently tapering a benzo, and have buspar to taper next, so I will report back once those tapers are done. 
 

@NardilTime I’m so happy to hear about yours resolving and I’m wishing you further healing.

 

@PortugueseSea I’m hoping yours resolves soon.

 

Thank you both for sharing encouraging stories!

[Rosetta]

Hi, PortugueseSea. I feel that I’ve recovered, almost completely, from aka.  Now, very rarely, I feel extremely slight physical anxiety in my legs in the evenings.  It passes pretty quickly.  The emotional anxiety it causes as it brings up memories of aka is worse than the actual physical sensation.  I do not let this bother me. I live as if I am completely healed.  I am sensitive to caffeinated coffee, and I don’t drink alcohol.  I would not dream of taking anything that might send me back into that Hell, even for a short period.

 

The most important thing to know is that this condition is temporary.  Even if it seems extreme or intense, the fear that it will go on forever is far, far more distressing than the condition itself - most of the time.  Please understand that I am not dismissing the horrible misery of it.  Quite the contrary, it is horrible, but, for me, while I was having aka — in those moments — the fear of it continuing and the fear of it returning over and over was the cause of much mental anguish and desperation to “escape” in any way possible.  When I realized that I could manage the condition with hot baths, hot showers, (some people find cold showers helpful), heated neck wraps, movement and avoiding alcohol and caffeine, I felt that I could survive through each episode — with the knowledge that one day I would be free.  One must have that knowledge.  Without it, all hope is lost.

 

Aka could stop at any time, it could become bearable at any time, and it will slowly go away if the nervous system is not agitated by changes.  The nervous system can heal itself if it is allowed to do so.

 

When I went to a psychiatrist with akathisia, he failed to diagnose it, he prescribed Trazodone, and he told me my “condition” of mental illness was permanent.  What he was saying to me was that aka was permanent whether he understood that or not.  He was telling me there was no hope.  That I continued to live after that appointment is a miracle.  His license to practice medicine should have been revoked over that incident.  He had no business prescribing drugs or being responsible for the care of patients.

 

The tragedy is that people who go to their doctors are prescribed more drugs, the dose is increased or decreased too much, or the drug is changed, or another drug is added, and THAT increases the degree of aka.  That is what kills people.  That the medical community cannot come to a consensus on this FACT is absolutely calamitous.

 

Rosetta 🧚🏻‍♀️

[PortugueseSea]

11 hours ago, Rosetta said:

Aka could stop at any time, it could become bearable at any time, and it will slowly go away if the nervous system is not agitated by changes.  The nervous system can heal itself if it is allowed to do so.

From the bottom of my heart, thank you.

 

I do not use any substances anymore, I can, thankfully, sleep over 6 or 7 hours a night. I am trying not to dabble too much with supplements, though I have sinned in the past, and stay off meds as much as possible. 

 

Thank you.

[PortugueseSea]

A very hopeful interview:

 

 

[cristal27]

Hi! it is usually has to do with high levels of serotonin! working on lowering your serotonin should be able to make you feel better. I recomend looking into Dr. Ray Peat work on serotonin. also Danny Roddy on youtube type his name along with lowering serotonin. SSri's cuase our serotonin levels to skyrocke which can lead to all these symptoms. I lowered mine with increasing my sodium and potassium intake. Coconut water on a daily basis with some salt for a few days is very helpful as it is high in potassium. Sodium helps lower histamine and serotonin so increasing your levels will help a lot. just make sure to use sea salt free of iodine and other chemicals. Sunshine and grounding feet to the earth help lower high levels of serotonin. l-thenine and cbd oil free of thc also help lower it. You can also try an antihistamine if your having a bada day as these lower serotonin and histamine helping the symptoms.  A huge part is also increasing dopamine, this comes with doing things you enjoy. Dopamine will help get rid of excess serotonin. But most importantly, acknowledged that your body can heal. God makes no mistakes. It's a matter of time. Hope the work of dr. ray peat on serotonin helps you like it helped me!

[PortugueseSea]

On 8/24/2023 at 3:20 AM, cristal27 said:

But most importantly, acknowledged that your body can heal. God makes no mistakes. It's a matter of time.

I am going through the mother of all waves and my agitation is through the roof at unbearable levels. 20 months of the causative agent, 5 months off the mirtazapine/all meds.

It is insane, this too shall pass.

I will get there.

[Lauren90]

On 12/1/2021 at 8:43 AM, mva96 said:

I had aka when I came off Lexapro for about 6 months, it was at its worst at like 9 months off then it eventually went away. 

How long did it take to completely go away for you?

[PortugueseSea]

I was wondering if Lamotragine would help with activation/agitation/akathisia. I am a member of a metoclopramide group on facebook and several members have mentioned already that it helped them with their akathisia/activation symptoms.

Does anybody have any insight on that??

I am not really keen on pharmaceuticals right now but if I have not improved sufficiently in another year or two I might consider it. I am worried about the continued effects of excess glutamate in the brain.

[Belajazi]

12 hours ago, PortugueseSea said:

I was wondering if Lamotragine would help with activation/agitation/akathisia. I am a member of a metoclopramide group on facebook and several members have mentioned already that it helped them with their akathisia/activation symptoms.

Does anybody have any insight on that??

I am not really keen on pharmaceuticals right now but if I have not improved sufficiently in another year or two I might consider it. I am worried about the continued effects of excess glutamate in the brain.

@PortugueseSea My doctor was also recommended me lamictal. But i did not took. 

i am very afraid, today i just take paracetamol for painrelief ,my heart goes to 150/min.anxieyskyrocket.

[Maybe]

Does anybody know of anyone who got akathisia years out? It's been 15 years since I took the pills and had an adverse reaction. Weird thing is, that it comes and goes. Started 2 months ago after a coffee and I have it off and on snce then. I have days and even had a week without it. The last weekend was fine and now it is back since yesterday. Mild to medium. Biggest problem is, that it is close to impossible to work for me (computer job)...

[PortugueseSea]

20 hours ago, Maybe said:

Does anybody know of anyone who got akathisia years out? It's been 15 years since I took the pills and had an adverse reaction. Weird thing is, that it comes and goes. Started 2 months ago after a coffee and I have it off and on snce then. I have days and even had a week without it. The last weekend was fine and now it is back since yesterday. Mild to medium. Biggest problem is, that it is close to impossible to work for me (computer job)...

Oh man, I feel you bro…

Are you on anything?

 

You probably just reacted to the caffeine, it will go away soon enough!

 

 

[Maybe]

1 hour ago, PortugueseSea said:

Oh man, I feel you bro…

Are you on anything?

 

You probably just reacted to the caffeine, it will go away soon enough!

 

 

No, nothing. I have never touched any other meds since this nice event happened.

It definitely was the coffee. And I am hopeful that it vanishes again, as I do not have it permanently. Still, after so many years (had some mild lingering symptoms, though) it is a bit more than a nuisance.

[PortugueseSea]

1 hour ago, Maybe said:

3 hours ago, PortugueseSea said:

No, nothing. I have never touched any other meds since this nice event happened.

It definitely was the coffee. And I am hopeful that it vanishes again, as I do not have it permanently. Still, after so many years (had some mild lingering symptoms, though) it is a bit more than a nuisance.

Coffee for me is worse than alcohol; it’s a guaranteed reaction.

 

Alcohol in small quantities doesn’t affect me.

 

it will completely vanish again, it always does, we just don’t know the timeline.

 

I don’t have any moments without it but the intensity varies and my baseline has been improving.

 

Slow and steady wins the race! Keep

in touch

 

[Maybe]

3 hours ago, PortugueseSea said:

Coffee for me is worse than alcohol; it’s a guaranteed reaction.

 

Alcohol in small quantities doesn’t affect me.

 

it will completely vanish again, it always does, we just don’t know the timeline.

 

I don’t have any moments without it but the intensity varies and my baseline has been improving.

 

Slow and steady wins the race! Keep

in touch

 

Alcohol is no problem anymore, but I sometimes had a mild reaction to coffee like feeling agitated. Never that bad with akathisia, though. Well, we will see how it develops

[Prozack]

I have question for you all. You talk about reacting to several things. One will same something help, someone else that it makes thing worse.

 

But for me, I will say that if you take anything (vitamins B, Mg caffeine, tobacco) it's hard to if it does help or makes thing worse. Like: "I feel more anxious, but in some way I feel better."

 

It's simply hard to say. Like something makes things worse in one ways, but better in another.

[Maybe]

On 4/4/2024 at 11:13 PM, Prozack said:

I have question for you all. You talk about reacting to several things. One will same something help, someone else that it makes thing worse.

 

But for me, I will say that if you take anything (vitamins B, Mg caffeine, tobacco) it's hard to if it does help or makes thing worse. Like: "I feel more anxious, but in some way I feel better."

 

It's simply hard to say. Like something makes things worse in one ways, but better in another.

That is why I stopped taking or trying anything at some point. Whenever something made a symptom worse, I was absolutely furious at myself for trying. Though I never observed that one symptom got better and another worse. If that had happened, I guess I would have compared what let me feel better overall. Some symptoms are of course easier to bear than others. On the other hand, making something worse is not really desirable.

[PortugueseSea]

On 4/7/2024 at 8:25 PM, Maybe said:

That is why I stopped taking or trying anything at some point. Whenever something made a symptom worse, I was absolutely furious at myself for trying. Though I never observed that one symptom got better and another worse. If that had happened, I guess I would have compared what let me feel better overall. Some symptoms are of course easier to bear than others. On the other hand, making something worse is not really desirable.

Indeed, unless something is 1) benign and 2) effective, you are better off not doing anything.

 

I’ve come a long way stopping all manner of things because of my agitation, coffee, pharmaceuticals, alcohol (the hardest and the one I am yet to fully stop).

 

 

[Dee12h]

On 7/31/2023 at 11:14 AM, Rosetta said:

Hi, PortugueseSea. I feel that I’ve recovered, almost completely, from aka.  Now, very rarely, I feel extremely slight physical anxiety in my legs in the evenings.  It passes pretty quickly.  The emotional anxiety it causes as it brings up memories of aka is worse than the actual physical sensation.  I do not let this bother me. I live as if I am completely healed.  I am sensitive to caffeinated coffee, and I don’t drink alcohol.  I would not dream of taking anything that might send me back into that Hell, even for a short period.

 

The most important thing to know is that this condition is temporary.  Even if it seems extreme or intense, the fear that it will go on forever is far, far more distressing than the condition itself - most of the time.  Please understand that I am not dismissing the horrible misery of it.  Quite the contrary, it is horrible, but, for me, while I was having aka — in those moments — the fear of it continuing and the fear of it returning over and over was the cause of much mental anguish and desperation to “escape” in any way possible.  When I realized that I could manage the condition with hot baths, hot showers, (some people find cold showers helpful), heated neck wraps, movement and avoiding alcohol and caffeine, I felt that I could survive through each episode — with the knowledge that one day I would be free.  One must have that knowledge.  Without it, all hope is lost.

 

Aka could stop at any time, it could become bearable at any time, and it will slowly go away if the nervous system is not agitated by changes.  The nervous system can heal itself if it is allowed to do so.

 

When I went to a psychiatrist with akathisia, he failed to diagnose it, he prescribed Trazodone, and he told me my “condition” of mental illness was permanent.  What he was saying to me was that aka was permanent whether he understood that or not.  He was telling me there was no hope.  That I continued to live after that appointment is a miracle.  His license to practice medicine should have been revoked over that incident.  He had no business prescribing drugs or being responsible for the care of patients.

 

The tragedy is that people who go to their doctors are prescribed more drugs, the dose is increased or decreased too much, or the drug is changed, or another drug is added, and THAT increases the degree of aka.  That is what kills people.  That the medical community cannot come to a consensus on this FACT is absolutely calamitous.

 

Rosetta 🧚🏻‍♀️

This needs to be a gold star post. So helpful.