Setback or akathisia stories - please give me some hope!

[[Av...]]

I’m approaching 6 months into a horrendous setback. In my case it was caused by alcohol. You guys may find this hard to believe, but I wasn’t really a member of the benzo community and was 10 years off Valium, so had absolutely no idea about setbacks or the dangers of drinking alcohol post benzos. I feel so stupid as, had I known, I would never have touched alcohol again after the 7 years I didn’t drink it post taper and withdrawal. 

Please could I be provided with some positive stories from people who have suffered severe setbacks like mine, whatever the cause, who have gone on to recover. To give you an idea of how horrendous my setback has been, I can list a few symptoms - rumination/intrusive thoughts, panic attacks/severe anxiety, nightmares and night terrors, severe depression/inconsolable crying, akathisia (pacing up to 16 hours a day with associated mental terror).

Please give me some hope!

When this started I was convinced that I was going to have to re-live my withdrawal years in their entirety because these symptoms are worse than I had back then. I’m still not convinced, despite some reassurance from people here, that this isn’t the case. 

Alternatively, if you don’t have a setback story, but have experienced severe akathisia with a positive outcome please tell me about it. With very little change in 6 months, I’m convinced I’m the next Chris Paige and I’m going to be tortured and pacing for 3 years. 

Bless you all!

Edited July 22 by [Av...]
add symptom

[[So...]]

Hello I unfortunetly can't give you a positive outcome or a setback success story, as I have been in akathisia for a good while myself.  It has been up & down for awhile with some okay months here and there.. won't tell you how long as I don't want you to project, but not incredibly long for everything I've been through, and I can't stress enough that it hasn't all been bad.

 

also, I know easier said than done, I need to take this advice more too, but try your best not to project.  It will last as long as it lasts, you are your own personal story and no one else is going to effect that!!  

 

Anyways, i just figure i will send you my support & let you know if you need an ear I am here for you 💗  dm me anytime.

Edited July 22 by [So...]

[[Av...]]

26 minutes ago, [[S...] said:

Hello I unfortunetly can't give you a positive outcome or a setback success story, as I have been in akathisia for a good while myself.  It has been up & down for awhile with some okay months here and there.. won't tell you how long as I don't want you to project, but not incredibly long for everything I've been through, and I can't stress enough that it hasn't all been bad.

also, I know easier said than done, I need to take this advice more too, but try your best not to project.  It will last as long as it lasts, you are your own personal story and no one else is going to effect that!!  

Anyways, i just figure i will send you my support & let you know if you need an ear I am here for you 💗  dm me anytime.

Thank you so much for your support. 

You are not the first, and won't be the last, to advise me to try not to project. It's so hard though. I've had akathisia a few times before and this is by far the worst in terms of intensity and duration. This, unfortunately, makes me think it is going to last longer. Come to think of it, it already has. 

[[PE...]]

No setbacks so far 9 months out. But i do had akathisia for a few months. 

[[gu...]]

I’m also in a horrible setback that started at seven years, and like you, my setback is infinitely worse than acute ever was.  It may have been brought on by using steroid nasal spray, Flonase. Or not. My symptoms are severe depression, insomnia, anxiety, and lots more. I get windows once in a while, but mostly every day is a really difficult battle. I’ve spoken with Baylissa and Jenn Leigh who both absolutely reassure me that setbacks end. Chris Paige had three years of akasthesia at the beginning, not toward the end of his recovery.  Like you I’m terrified that I’ll be stuck like this forever. But everyone tells me that’s impossible.

[[...]]

I"m sorry this has happened. Are you considering to reinstate or is it completely out of the question? Its been 7 months for me that rescue doses triggered severe issues, disabled and getting worse, no relief. Worse than a setback as i never had none of this neurological damage before. Dont know what to do but scared of reinstating. Still cant believe these stupid benzos 

[[Av...]]

[[...]]

I'm glad you feel that way about your situation 

[[Av...]]

Edited July 23 by [Av...]

[[vo...]]

31 minutes ago, [[A...] said:

 

23 hours ago, [[A...] said:

 

Alternatively, if you don’t have a setback story, but have experienced severe akathisia with a positive outcome please tell me about it.

 

@[Av...] If you go to the home page, type in "aka success" in the search bar. Don't type in the whole word, only "aka success" (without the quotation marks). Reason is that akathisia has been misspelled in some cases. You will find articles about akathisia success stories! I hope you will find some stories that resonate with you and give you hope. You WILL eventually improve and heal.

Edited July 23 by [vo...]
update

[[Av...]]

1 minute ago, [[v...] said:

@[Av...] If you go to the home page, type in "aka success" in the search bar. Don't type in the whole word, only "aka success" (without the quotation marks). Reason is that akathisia has been misspelled in some cases. You will find 403 articles about akathisia success stories! I hope you will find some stories that resonate with you and give you hope. You WILL eventually improve and heal.

Thank you.

[[vo...]]

4 hours ago, [[A...] said:

Thank you.

I read this today - you should read it. I think you will find it very helpful

There is hope for you and everyone. Never give up. 

Edited July 23 by [vo...]

[[Bu...]]

2 hours ago, [[A...] said:

The last 6 months have been the worst time of my life. I’m not sure how I have survived. The symptoms are far worse than I ever experienced before. I feel like I have CT'ed from a high dose of benzo. The akathisia is severe. Each day is torture. I am completely non-functional and housebound.

But, my fear of making things even worse prevents me from reinstating or taking another drug. I’m not going to lie, there are days I don’t think I can carry on any longer, but I have to. I’ve healed before, I just hope I can heal again. 

Please guys, give me some hope!

 

I feel desperate also about the akathisia.  I’m largely bedridden with long covid fatigue so this feels insurmountable sometimes 

It feels like an uncomfortable urge to not lie still and quiet. It makes me talk for hours and hours (ask my husband) at night and sit up and move around much more than my body can take -  I’m aching so much but can’t keep still to rest. But if I try to lie down and relax it doesn’t work - every few seconds my head and neck jerk or my legs jerk up. 

it only started a few days ago and is there every couple of days for many hours in a row. I initially thought it was due to overstimulation and poor diet but I ate perfectly and limited screens yesterday. It started at midnight and is still going on eight hours later. 

please tell me - those who have had it,     did it come and go like this or was it there all the time for you? 
 

[[vo...]]

1 hour ago, [[B...] said:

 

I feel desperate also about the akathisia.  I’m largely bedridden with long covid fatigue so this feels insurmountable sometimes 

It feels like an uncomfortable urge to not lie still and quiet. It makes me talk for hours and hours (ask my husband) at night and sit up and move around much more than my body can take -  I’m aching so much but can’t keep still to rest. But if I try to lie down and relax it doesn’t work - every few seconds my head and neck jerk or my legs jerk up. 

it only started a few days ago and is there every couple of days for many hours in a row. I initially thought it was due to overstimulation and poor diet but I ate perfectly and limited screens yesterday. It started at midnight and is still going on eight hours later. 

please tell me - those who have had it,     did it come and go like this or was it there all the time for you? 
 

@[Bu...] Sorry about this. I went to respond to you but don't have the wording I wanted to say. Will comment again later. Unable to delete this.

 

Edited July 23 by [vo...]

[[Bu...]]

1 hour ago, [[v...] said:

@[Bu...] Sorry about this. I went to respond to you but don't have the wording I wanted to say. Will comment again later. Unable to delete this.

I’m actually beginning to wonder if what I’ve been getting this morning was not akathisia, rather was it agitation coupled with hopelessness? If I was talking then I was able to keep the rest of my body still. Does this make it distinct from akathisia? Can anyone advise me?

[[So...]]

@[Bu...]you can have akathisia and be able to keep still, there are different levels of it.  i cant tell you if you have it or not though, but if you did it would be miserable & you will probably know.  And no matter what it is, it will end one day

[[...]]

@[So...] please explain about the aka where you can sit still? I thought it was a movement problem with pacing etc? What would a different level aka feel like?

[[vo...]]

[[So...]]

@[...] @[vo...]

 

Okay... well this is a topic that is actually fought over a lot, so I will just give my input on it and that's all that it is... my opinion.

 

To me there are layers of akathisia.  Mental & Physical.  Mental Symptoms would include racing thoughts (like insane speed), agitation, terror, dysphoria, hopelessness.  Usually it is accompanied by an extreme sense of urgency for something that doesn't exist and SI/HI.

 

Physical would be pacing, rocking bad and forth, scratching oneself, shaking limbs, hitting yourself in the face, etc.  These movements are voluntary to relieve the terrible restless feelings, but it doesn't relieve them much.  Other physical symptoms are exploding feelings in the body, vocal tics, energy feeling in the body, insane pressure in different parts ie the spine, chest, neck, head etc.  

 

It is also possible to be restless and pace without having akathisia.

 

I always say that you would know if you had it, because there is nothing else really like it.  I have seldom ever paced, i usually have to shake my limbs or rock back & forth when it's really bad.  It's crazy that Google only talks about physical symptoms, because I have actually never talked to someone who paced and didn't also have the mental symptoms as well.  There are some medical articles that talk about the mental aspect, but not many.

Edited July 25 by [So...]

[[...]]

@[So...] thank you, that makes sense and explains a lot. Hope it'll fade away for everyone!

[[So...]]

Yes for sure, and it will, never want to scare anyone so I should chime in, akathisia isn't permanent & there is a different path to recovery for everyone but we will all get there

[[Re...]]

On 21/07/2024 at 22:43, [[A...] said:

I’m approaching 6 months into a horrendous setback. In my case it was caused by alcohol. You guys may find this hard to believe, but I wasn’t really a member of the benzo community and was 10 years off Valium, so had absolutely no idea about setbacks or the dangers of drinking alcohol post benzos. I feel so stupid as, had I known, I would never have touched alcohol again after the 7 years I didn’t drink it post taper and withdrawal. 

Please could I be provided with some positive stories from people who have suffered severe setbacks like mine, whatever the cause, who have gone on to recover. To give you an idea of how horrendous my setback has been, I can list a few symptoms - rumination/intrusive thoughts, panic attacks/severe anxiety, nightmares and night terrors, severe depression/inconsolable crying, akathisia (pacing up to 16 hours a day with associated mental terror).

Please give me some hope!

When this started I was convinced that I was going to have to re-live my withdrawal years in their entirety because these symptoms are worse than I had back then. I’m still not convinced, despite some reassurance from people here, that this isn’t the case. 

Alternatively, if you don’t have a setback story, but have experienced severe akathisia with a positive outcome please tell me about it. With very little change in 6 months, I’m convinced I’m the next Chris Paige and I’m going to be tortured and pacing for 3 years. 

Bless y

[[Re...]]

@[Av...] Both Matt Marin and Melissa Boutilier post on YouTube about akathisia recovery. You might find their posts helpful.

I was pacing up to 12 hours a day for 14 months. Akathisia is the only symptom I have had windows from. I am now almost 24 months off benzos and over a year off of the antipsychotic that made akathisia worse. The last time I paced was on Thanksgiving of last year, but I still live with internal akathisia. It is very slight compared to what it was. I have had times where I have had scary internal spikes with chest pressure, and I don't know why - I think it is hormone-related with an underlying drug injury. Sometimes I have little spurts during the day where it feels like a wave, then passes with an ice pack to the chest. I keep one by the side of my bed as these spikes often come between 3-5 am. I ordered one on Amazon called CryoMax that lasts 8 hours. FYI if this works for you.

I am like you; I take NOTHING. Not even an Epsom bath. I have heard of people getting akathisia spikes from grounding mats -- things that seem benign like that can act on nervous system injuries. My pill is time now. I've heard people have spikes from steroid drops and Pepcid. Many classes of drugs cause akathisia.

Alcohol acts on GABA, so I am not surprised that this happened. I have heard another story of alcohol-induced setback causing akathisia years off. Then some people drink and have no issue. Recovery is the Wild West.

Remember, Chris Paige was and still is on two drugs that cause akathisia, and I think that contributed to the longevity of his case. I have not heard many success stories of people recovering on drugs because it is a drug-induced neurological condition. So it is very good that you are off of all drugs.

If I were you, I would never drink again. Just call is quits.

 

Edited July 26 by [Re...]

[[Av...]]

8 hours ago, [[R...] said:

@[Av...] Both Matt Marin and Melissa Boutilier post on YouTube about akathisia recovery. You might find their posts helpful.

I was pacing up to 12 hours a day for 14 months. Akathisia is the only symptom I have had windows from. I am now almost 24 months off benzos and over a year off of the antipsychotic that made akathisia worse. The last time I paced was on Thanksgiving of last year, but I still live with internal akathisia. It is very slight compared to what it was. I have had times where I have had scary internal spikes with chest pressure, and I don't know why - I think it is hormone-related with an underlying drug injury. Sometimes I have little spurts during the day where it feels like a wave, then passes with an ice pack to the chest. I keep one by the side of my bed as these spikes often come between 3-5 am. I ordered one on Amazon called CryoMax that lasts 8 hours. FYI if this works for you.

I am like you; I take NOTHING. Not even an Epsom bath. I have heard of people getting akathisia spikes from grounding mats -- things that seem benign like that can act on nervous system injuries. My pill is time now. I've heard people have spikes from steroid drops and Pepcid. Many classes of drugs cause akathisia.

Alcohol acts on GABA, so I am not surprised that this happened. I have heard another story of alcohol-induced setback causing akathisia years off. Then some people drink and have no issue. Recovery is the Wild West.

Remember, Chris Paige was and still is on two drugs that cause akathisia, and I think that contributed to the longevity of his case. I have not heard many success stories of people recovering on drugs because it is a drug-induced neurological condition. So it is very good that you are off of all drugs.

If I were you, I would never drink again. Just call is quits.

Hi,

thanks for the response.

Don't worry I will never, ever drink alcohol again.

Did you have mental terror with your akathisia? Mine is so bad.

 

[[jo...]]

On 22/07/2024 at 06:43, [[A...] said:

f you don’t have a setback story, but have experienced severe akathisia with a positive outcome please tell me about it

I have been experiencing it in recent weeks. My worst days, like yesterday, I pace 16 hours like you. I have had some days without it. I have been getting it as a result of startup effects of Mirtazapine. Do you experience it every day or do you get it in waves without respite? It's the worst symptom I have yet to experience and it's not even because of benzos for me. I think I made a big mistake taking Mirt. Or at least I should have started a lot slower.