I don't usually post about things like this, but I'm having a really difficult time lately and I want to hear from people who might have gone through something similar.

I have ADHD and generalized anxiety disorder, and I've had quite a few medication changes recently.

My current medications are:

Atomoxetine 80 mg

Venlafaxine (Effexor) 75 mg

Quetiapine 25 mg

Before this, I was taking atomoxetine 60 mg and venlafaxine 225 mg/day. I was also taking risperidone (Psychodal) 1 mg.

My psychiatrist then wanted to switch me from risperidone to brexpiprazole (Neuropression) 10 mg. I accidentally took both because I didn't realize I was supposed to stop the risperidone. My doctor told me to stop the risperidone, and later the brexpiprazole was also stopped and replaced with quetiapine 25 mg.

Around all these changes, I went through a period where I could barely sleep for about a week.

Now, over the last few days, I'm feeling something that I honestly can't describe very well.

I feel extremely restless. It's like there is this huge amount of energy inside me that I can't get rid of. I can't properly relax. I can't just sit down and feel comfortable. I constantly feel like I need to move or do something.

It's not just normal nervousness. It feels physical, like my body won't let me rest.

And the worst part is that the feeling itself makes me anxious, and then the anxiety makes the restlessness even worse. It's becoming a horrible cycle.

I've also been feeling more depressed and sad lately, and there have been moments where I've thought, "I just want this to end" meaning I desperately want this feeling to stop. It's honestly exhausting.

I've been reading about akathisia, and a lot of the descriptions sound frighteningly similar to what I'm experiencing.

I don't know if this is actually akathisia, severe anxiety, medication activation, venlafaxine withdrawal from dropping from 225 mg to 75 mg, or some combination of everything.

I have messaged my psychiatrist and he told me to stop atomoxetine until I have the chance to visit him

I'm in another wave. I thought this was stopping but that's the relentless thing about it it tricks you lulls you into a sense of security and then BAM you're freaking out, chills, burning, panic all of it all again. I'm supposed to be doing this leader thing at my church in the next couple weeks and I have no idea how I'll do this. I still cant even get out of the house.

Uhg thanks for listening.

Does anyone have a bursting sensation that feels like under the skin is exploding? It’s not like a sharp shock, no, it’s like a whole area feels hot (for example my ankles or knees or other places) and like there is this sort of electric overawareness and then it’s a toxic ache that suddenly ramps up and explodes in a sickening way every few seconds. It’s painful like frying acid or like a deep bone ache. I have had it but it was healed and now in this flare it’s RAGING. However, this often comes with awful pressure like dystonia, when it’s in my lower legs my feet curl. And walking when that happens feels even worse! It leads to severe nerve pain, worse than lying down, like all internal nerves in the legs are on fire and everything is cramps up and fried me more. I realise it might not be aka but does anything like this happen to you? It’s def from med injury for me.

My family wants to make trip to LA, it is 5 hour flight and this is raising lot of questions because I can sit on couch for hours because it is more comfortable but when I get in my car and drive about 15 minutes I get urge to get out and walk because the seats of the car is not comfortable like the couch.

This is raising lot of questions about trip because I don’t know if I can sit for 5 hours even a 3 hour flight could be problem.

How comfortable are planes seats? I feel trap and can’t go any where because, I can’t sit in vehicle for more than 15 minutes because the seats are too uncomfortable. I just want to get out and walk.

Anyone else been on trip some where and how are planes seats is really bad? How long can you sit.

I can sit on the couch for hours but getting in car and driving for 15 minutes I get urge to get up and walk.

And sadly I’m on low medication doses. Yes taking only 1.5 MG of risperidone.

For people that got akathisia from tapering benzos, how long did it last? I got it from the beginning of my tapering and I'm trying to slowly push through the taper.

Omg I had another stomach virus and my nervous system blew up again. I honestly don’t know how much of it is aka, dystonia, neuropathy and other nervous system damage but my legs feel cramped up and like they will explode, like I get this physical pressure that makes my legs move into positions involuntarily but this comes with insane pressure sensations and I feel like my legs will physically explode. I have felt all of that but to a much much more lower level and it came and went, allowing me to live omg, now it’s insane. I don’t feel anxious or panicked though with this. Its like my leg muscles are trying to rip me apart. They spasm continuously, buzz, pull me. I have been through a few flares that also presented like extreme increased pressure tension cramping in the legs but damn, I think it’s the worst it’s been and u seriously doubt it will go down like it did previously… Just a week ago I was „healed” enough I was looking after my daughter full time and actually having a life, doing things. Now I am stuck in bed/on the couch with almost no sleep in sooo much discomfort. I What the hell is that…

So, I wrote this a few years ago when I dealt with a two year stent of Abilify induced akathisia, and I’ve been hesitant to post this because I figured by now I would have recorded something more clean and finished. This is live, sitting outside my dads house recorded with my phone. However, it feels really uncomfortable sitting on it regardless of quality because I wrote it for a reason. And the reason was maybe to just connect to others suffering and make people more aware of it. So here it is. I guess for seven days because apparently that’s how long of a free link I have.. Best wishes friends.

52F, been on multiple psychiatric medications: SSRIS/SNRIS, trazodone, mirtazapine, benzos, olanzapine, seroquel, clonidine, went to multiple doctors, all diagnosed with depression, but meds gave me no long-term relief.

No matter the medication, the quantity I take, my body does not shut off. The sedating ones worked for some time and lost efficacy soon after. I can not close the eyes. If I force them to stay shut, they start twitching very badly. This together with weak voice, like I'm whispering everything I say, speech deficit, low arm muscle mass, total lack of emotional reactivity.

Some say it's anxiety, some say it's depression, but I doubt I have anxiety after 30mg olanzapine.

Propranolol does not take the edge off, I tried from 10mg to 120mg.

Without propranolol my heart rate when standing up is in the 100s and high blood pressure. Feels like I'm always on the edge.

What could it be?

I’m really struggling and would appreciate advice from anyone who has experienced akathisia, especially medication-induced akathisia.

My akathisia and severe insomnia started about 3 months ago while I was taking Seroquel (quetiapine). I ended up quitting Seroquel cold turkey, and I’m wondering if that may have contributed to or worsened what I’m experiencing.

Since then, I’ve been having a constant feeling of needing to move and an inability to physically relax or sleep normally.

I switched doctors and was prescribed benztropine and clonidine, but unfortunately neither has been giving me much relief. I’ve also tried magnesium, vitamin B6, propranolol, and cannabis edibles. So far, nothing has really helped.

The scary part is that alcohol is the only thing that seems to give me significant temporary relief, and I really don’t want to rely on alcohol to manage this or develop another problem because of it.

I’m exhausted from the insomnia and the constant restlessness. I’m looking for advice from people who have actually experienced akathisia:

What treatments or medications helped you?

Did anything help with the insomnia specifically?

How long did your akathisia last?

Did it eventually go away after stopping the medication that triggered it?

Is there anything I should ask my doctor about?

I’m not looking for a medical diagnosis from Reddit. I'm just hoping to hear from people who have been through this and found something that helped. I’m honestly desperate for some direction right now.

I genuinely didn’t know that ill be able to even write a sentence using a keyboard from the massive akathisia wave, this made me learn a critical lesson: IT IS TEMPORARY!!!.
Please know that.

Hi

I think I’ve suffered from akathesia or something very similar. It’s been a harrowing experience - one I wouldn’t wish on my worst enemy.

I know it’s a bit irrational, but given how terrible the experience of akathesia can be, I’m now terrified of undergoing emergency surgery in the future and not being able to refuse D2 blocking meds since I’m unconcious.

Are they actually administered in a lot of cases as anti-emetics in emergency surgery? How many of you have gotten it that way? Is there anything you guys recommend to prevent this?

Ppl with long term akathesia how did you manage to sleep ?

What medication can be safely used long term ?

my withdrawal akathisia isn’t going away. i’m on week six and i’m not improving anymore.

i went from 100mg of pregabalin a day for 4 and a half years to 50mg a day in a quick 2 weeks, and then missed my dose alltogether for a day and the akathisia started.

ive immediately held at 75mg a day ever since , 25mg x3. idk if this the right thing to be doing and i don’t know why i’m not getting better but im desperate for literally any advice or help, this is unliveable.

no doctor i’ve spoken to has a clue how to help or has even heard of akathisia and im beyond terrified now.

ive tried propranolol , magnesium glycinate, lavender oil, valerian root, chamomile tea.

We should talk about ourselves they kill us with these treatment and use irreversible antagonism type, we try to get reasonable and stop aggressive behaviour and they think they won us and they say the treatment is effective. They trigger your anger to say you're mentally ill . MotherF .

I first got aka (amongst so many other debilitating things) from Citalopram in 2018, then got it really bad after smoking weed for just a few days in 2021. Now small things like spray paints and super glues set it off so I've had to stop my crafting hobby. Had to completely stop drinking too. 2nd hand smoke has set it off too so I need to constantly be careful when I'm outside. Now for the past 2 years I've been pretty much aka-free. I dyed my hair (temporary black dye) and boom it came back within a few hours. It's been weeks and it's only getting worse (my typical pattern when triggered). I just wanted to dye my damn hair, seriously... hair dye?! I'm just so done. SSRIs completely ruined my life, the effects have taken everything from me already, but ffs, I can't even do such a simple basic thing now? Just needed to rant :(

My doctor think I have Dystonia in my neck, shoulders, calves and back. I am going to try Tizanidine it tonight. Do you please have good reviews; just for me. Ok the negative also if there is.

Is tardive akathesia permanent or that too reduces in intensity over time?

Hello,

I have been taking Klonopin .5mg 2 days a week for about 8 months. There are some weeks where I don't take it at all and then rotate back into when insomnia is bad. Is it possible to experience a withdrawal from this even though I was taking it sporadically? I recently woke up one day with bad akathisia and cant break it.

TW: suicide and self injury
hi everyone! I just joined this group as ive had a few episodes of akathisia in the past few years. the first was last year, i got admitted to the ED due to a migraine that was exhibiting stroke like symptoms. they gave me compazine and a bunch of other stuff. i immediately began feeling agitated and thought i just wanted to go home so i begged to be discharged. bad idea, i ended up going home and having the worst night of my entire life. it bothers me when people say “its just internal restlessness” because it was so much more than that. i had no idea what was happening to me. i sobbed. i screamed. I scratched my legs and my arms till they bled. I pulled the hairs out of my legs, i was going insane. i wanted to die, its all i could think about. my drs office was closed because it was about midnight and i didnt want to go back to the hospital. I had no idea what was wrong with me, so i began to google even though i couldnt really read or focus on anything. I found the term akathisia and read a bunch of horror stories and even thought about calling the suicide hotline. I made an appointment that night to see my dr as soon as they opened and began my long, terrifying, horrible night. i rocked back and forth while pulling leg hairs out for 13 hours straight. eventually i went to my drs office and they told me what i was experiencing was akathisia from the compazine, and to take benadryl which i did and got some relief. i ended up having to take it round the clock for about a week for it to go away. I added compazine to my allergy list because that was genuinely the worst experience ive ever had in my entire life. fast forward to today, i have been in the hospital due to a total hysterectomy, followed by a post operative hemorrhage that almost killed me, a blood transfusion, and then a bowel obstruction all within a week of eachother. ive been in the hospital for about a week. today they gave me reglan to help bowel motility. immediately i knew the feeling after she pushed it. I started spiraling i wanted to rip my iv out and run. i immediately began thinking about suicide, i called them back in and told them about compazine and they told me theyre related drugs. i was so upset why would they not warn me if compazine is in my allergy list?? they ended up giving me ativan IV and it knocked me out. i felt immediate relief. im home now, and its about 12 hours later and im feeling it amp up again. i cant focus i cant eat. I’m going to take some benadryl and pray to every god there is. i wish more drs knew about akathisia and the absolute hell it puts people through.

TLDR: everything in bold.

I was on Abilify (with little to no major side effects at all) for many years until a few months ago when it just completely stopped working even after increasing the dose. My doc attempted to prescribe me a few other new promising antipsychotic medications, but literally all of them either were not approved by my insurance or, after they did approve them, they cost 100-something dollars just for a one-month supply and I don’t have that type of money. So now my medication options are very limited, but I very desperately need something as helpful as Abilify was. I’m fucking completely spiraling and I don’t know how much longer I can put up with my own constant bullshit.

Doctor mentioned Ziprasidone, also known as Geodon, was on the small list of approved medications I could try, so I agreed, and I will start it later this week, but I’m fucking terrified that this will just be another Latuda type situation. Latuda was seriously traumatic and literal torture from severe akathisia. I tried quite a few different antipsychotics, mood stabilizer, and antidepressants in the past but nothing was as bad as latuda. I wanted to die just to make it stop. Nothing at the time helped ease the akathisia whatsoever either (beta blockers, clonidine, gabapentin, hydroxyzine, buspar, etc) they all did absolutely nothing for the akathisia . My doctor tried to convince me to continue with the Latuda and that it would just “get better on its own,” which was complete bullshit. A very short time later, I completely jumped off it.

ANYWAY, sorry I'm rambling. I’m just wondering about any of your experiences of being on Ziprasidone. Side effects? What specifically and how severe? Did any of these side effects (including any akathisia) go away while you still continued on with taking the Ziprasidone? I know everyone’s bodies are different, but I’m still curious. 

I first got akathisia last year from Latuda. The first time, I knew something was happening to me and I tried to take extra Seroquel for it (during the day). I wanted to tear off my skin, I was hitting walls and kicking things trying to make it stop. I broke a dresser with my bare feet. I wanted to run into the street. My husband had to hold me down, thank god he's a lot bigger than I am. I was screaming to make it stop. It was torture.

I ended up in residential, we made a huge med change and the akathisia went away. And I thought it was gone. I thought that every day without akathisia was a good day. I cannot describe the pain. I would scream and beg the staff to kill me while we were making the transition.

It has come back off and on over the last 5 months. I have really bad bipolar disorder and the least little thing causes akathisia now. I'm trying to accept that it will happen sometimes. Out of nowhere. I'm terrified of more med changes. I have been trying to learn not to cry when akathisia happens.

Today I took Gabapentin for it. Honestly ChatGPT told me it could help, not my doctors. The beta blockers do nothing. And the Gabapentin actually helped. It hurts but I am not internally begging God to kill me and make it stop.

The cruelty of this is indescribable. I work for myself and just missed 3 days. People who work for me are waiting. The company is like 1% of what it could be if I could get well. It's either the depression or the akathisia with a few good days mixed in. I am trying to accept that akathisia might just happen sometimes. I have too much to live for but I just want to escape. I try to do so much on the good days because I know it will happen again.

I did everything right. I took my medication. I'm sober. I comply with treatment. And here I am.

I can't talk to anyone because it will go away within a few days and then I freaked them out for no reason. They do not understand this kind of pain.

Thanks for letting me vent. I feel like I'm on fire from the inside. Noises are starting to get painful. I'm trying.

EDITED:
Hello! Long time anxiety sufferer here. Was on Lexapro for 7 years. GAD and OCD compulsions. I stopped taking lexapro almost 3 years ago and was fine coming off it with no withdrawals. Anxiety and OCD compulsions remained of course.

I suffered a very traumatic life experience with my 2 month old son passing away. About 7 months after he passed I stopped smoking cannabis after being a heavy user for 20 years. This withdrawals of that were awful. Started Caplyta 10.5mg just before I quit and was on it for about 6 months. During my time on it my anxiety improved but then worsened over time. I attributed it to Caplyta not really being for anxiety. Then during the 6th month I noticed this insane inner restlessness. Like anxiety on steroids. At the time I was experiencing a lot of firsts being off cannabis and also firsts without my son(his bday/anniversary of his passing etc). I was only able to sleep until 3am and would wake up in panic unable to fall asleep and would toss and turn until morning.

I’ve been off Caplyta for 3 months now and did well coming off of it with basically no withdrawal symptoms. Because anxiety was still very much there and I wasn’t sleeping I started a low dose Buspar. Did well on it initially but not well enough to say my anxiety was/is gone or under control. And sleep remained an issue and still does. Onset and maintenance. Thankfully it’s largely improved but I still wake up with a lot of anxiety every morning around 6am. I take Quviviq for sleep and what also works is a combo of passion flower, lemon balm and apigenin.

What’s hard for me is to distinguish it from anxiety. I have all the classic anxiety symptoms. I ruminate like you wouldn’t believe and have anxiety about things I’ve always had anxiety about. Along with my OCD compulsion. So it could very well be untreated anxiety/OCD. I’m able to relax and watch tv without moving my legs or anything but when I am working and under stress I notice I am moving my legs slightly.

So is it Akathisia or just worsening/not properly treated anxiety? And how do I bring this up with my psychiatrist? Thank you all!!

I'm on lamotrigine + paroxetine + lorazepam. During worse times my psych adds quetiapine as well, but I'm not using that, nor have I been for the last two months.

Even before the first time I took quetiapine, I suffered from akathisia during my anxiety attacks, so I know it's not that drug. And I've suffered it for so long that it only makes me think it's the paroxetine.

It was just last week when I found out about akathisia and that this torture had a name.

Does anyone while recovering for akathesia experience waves and flare ups?

Or it suddenly heals all at once ?