bheb: akathisia without dose change

[bheb]

5 hours ago, herod said:

How is your memory, concentration, etc.?

 

Pretty much untouched! Sitting and concentration is definitely hard with bad akathisia but no separate cognitive issues.

[Rosetta]

I'm sorry you are having aka, Bheb.  Inner itchiness . . . I'm not sure I have felt that, but the tension I recognize.  Aka for me is more of a vibration sometimes and sometimes a feeling that I can't describe except I want to make it stop no matter the consequences.  It could be called tension -- extremely severe tension -- but it's so much more.   I really can't describe it.  

 

I did have itchiness deep inside my ears for a long time.  Every so often a "normal" itch in my ear reminds me of that.  I'm not sure it had anything to do with aka.  

 

Having no cognitive problems at all sounds nice.  I'm glad you are feeling that.  This is so different for each of us, and yet the same -- horrible.

 

I hope you feel better soon, Bheb.

 

Rosetta

[bheb]

33 minutes ago, Rosetta said:

m sorry you are having aka, Bheb.  Inner itchiness . . . I'm not sure I have felt that, but the tension I recognize.  Aka for me is more of a vibration sometimes and sometimes a feeling that I can't describe except I want to make it stop no matter the consequences

 

Yes, the akathisia sensation can vary a lot for me. Sometimes it's more of a painful bound up tension that needs releasing, sometimes it's more "itchy" or "prickly" bordering on paresthesia (which I find less bothersome). Both "versions" result in restlessness/wanting to move and get it out of me. I also relate to the vibration feeling...generally feels like electricity buzzing through my body. All in all, it seems like people experience akathisia differently (it being such a peculiar sensation) but what's common is the intensity, desperation, agitation of it all. 

 

I was happy to read your positive update a few days ago, but so sorry to hear akathisia has flared up for you now. You'll kick it to the curb again, I know. 

[herod]

Happy to hear your brain is working bheb -- mine is mush

 

Would you describe your akathisia like mounting tension that ends in you feeling compelled to contract or twitch your muscles? Has fish oil + B6 worked for you at all?

[bheb]

11 hours ago, herod said:

Would you describe your akathisia like mounting tension that ends in you feeling compelled to contract or twitch your muscles?

 

Yes, absolutely, it does feel like that at times.

 

And I haven’t tried fish oil (I’ve been increasing fish in my diet though) but I’ve tried b6 with limited success. I found that at the dose I needed to feel any relief it made me intensely nauseous.

[bheb]

I’ve had a sudden onset of severe symptoms I did not have before. Hallucinations, panic attacks, feeling weak, feeling very angry and hostile, extremely agitated by noise. 

 

I’m still tapering my benzo but haven’t sped it up recently. But I do understand these things can accumulate and be delayed.

 

The only other change is a flu shot I got a week ago. And the only thing I know that can happen over a week after a flu shot is post vaccinal encephalitis. But that is of course rare.

 

Any thoughts?

[Alice1]

Hey Bheb 

I also had a major flare up of symptoms at the 3 year mark .. From looking at your signature , it looks like you are in that camp as well (3 years from initial ct) .  As usual , when my symptoms blew up , I live on here and research and read everything .. I have found it common for a lot of folks to experience craziness at the 3 year point .Idky .  I don't know what to say about your benzo other than I got smashed with symptoms like never before at 3 years and I'm 100% clean .. I'd like to say that you're definitely not alone ..  How is your Akathisia ?  

[bheb]

On 10/20/2019 at 1:05 PM, Alice1 said:

Hey Bheb 

I also had a major flare up of symptoms at the 3 year mark .. From looking at your signature , it looks like you are in that camp as well (3 years from initial ct) .  As usual , when my symptoms blew up , I live on here and research and read everything .. I have found it common for a lot of folks to experience craziness at the 3 year point .Idky .  I don't know what to say about your benzo other than I got smashed with symptoms like never before at 3 years and I'm 100% clean .. I'd like to say that you're definitely not alone ..  How is your Akathisia ?  

 

Gosh, I always miss posts on my thread. Yes, coming up on 3 years. Thanks for checking in. Thankfully no more weird psych symptoms. No idea if it was from benzo wd or what. 

 

Akathisia is not great. I seem to have a lot more "itchiness" than I recall. The prickly sensation in the limbs, deep urge to move. In the past it alternated pretty consistently between that and then a general uneasiness/restlessness that was often localized in the chest. I find myself longing for the latter version of restlessness, but when it comes off course I hate it too. 

 

How're you doing? Any windows?

[Alice1]

7 hours ago, bheb said:

How're you doing? Any windows?

 

 Hey Bheb 

I'm up and down . I get windows that last 30-90 minutes at a time .. Probably like 3 times a day .. The last 2 months have been complete hell .. There are no patterns with my WD . I never know what I'm in for everyday . I'm still functional , but that's only because I absolutely can't let it take me out .. If I stay home or give up fighting I will lose , and so will my daughter, and that ain't happening.. 

[bheb]

11 hours ago, Alice1 said:

 

 Hey Bheb 

I'm up and down . I get windows that last 30-90 minutes at a time .. Probably like 3 times a day .. The last 2 months have been complete hell .. There are no patterns with my WD . I never know what I'm in for everyday . I'm still functional , but that's only because I absolutely can't let it take me out .. If I stay home or give up fighting I will lose , and so will my daughter, and that ain't happening.. 

 

I’m the same — I’m functional because it makes me feel worse to stay at home. It compounds a feeling of hopelessness and lost identity. And with restlessness and severe agitation it helps to move around and distract myself. I am also probably able to do so because I don’t have any mental symptoms for the most part. 

 

There aren’t any patterns to mine either. Every day is different and no clear triggers to be found. Well except for the fact that the first 5-10 minutes of waking I feel pretty normal. But after that the severity varies no matter what. 

 

I cant imagine caring for another human in this state. I’m sure it gives you lots of motivation though. 

[bheb]

So throughout this whole thing I’ve basically been in survival mode. I never did anything just for enjoyment, only to get through the day. The fact was that I just couldn’t enjoy anything like I used to, so I found it futile to try.

 

I’m now realizing how maladaptive that was. I know there are many with severe akathisia for example who simply cannot break away from pacing. I’ve got pretty constant inner tension/agitation/itchiness/restlessness but actually I can function. I’m realizing that the alternative I created was no better.

 

Sure, enjoyment is often lost on me, but I’m seeing now that there’s no point on giving up on it in general. I’ll be miserable trying to enjoy life or I’ll be miserable just surviving. But in the first case, I may occasionally feel a breakthrough. Also it might even aid my healing itself.

 

I recently got out of a relationship and thought it was going to be a terrible thing for my health. Maybe it was a little, but it’s pushed me to try to live as a person again. Before I just put my energy into making that person happy/constantly trying to salvage the relationship OR just getting through a day with my symptoms. My identity was lost otherwise.

 

Now I am experiencing the gravity of my loneliness. I have no friends where I currently live. I am taking an art class, and am searching for other ways to get involved and develop some kind of community. I would love to hear people’s experience with this/any advice on trying to find purpose in this mess.

 

 

[bheb]

These three years are really wearing on me.

 

The burning itchiness is so unbearable, cannot lie in my bed tonight. 
 

Although there is no good age to endure this, I cannot help but feel that my youth has been robbed.

 

I’ve spent the entirety of my twenties so far in extreme agitation. 
 

I’ve been researching treatments like NAD therapy since I’m not seeing any general progress. I feel that those places scam people — 15,000 dollars for some IV supplements? 
 

Sorry for a negative post. These “anniversaries” are tough. I have much regret I am trying to let go — about letting myself get fooled by psychiatry. 

[bheb]

Putting an update on this thread too. Akathisia has been a bit less the past couple weeks. Instead, I've got some mental symptoms. Brain fog, dizziness, trouble reading,  completely zone out visually for much of the day. I also have muscle twitches and wake up at 5:30 everyday no matter how when I go to bed. 

 

So we'll see. I had some diet and supplement changes in late May that may have precipitated this shift. 

[Altostrata]

That's an improvement, thanks for updating. What happened to the itchiness?

 

See

 

Waking with panic or anxiety -- managing the morning cortisol spike

 

More about how light stimulation affects our body clocks

 

Tips to help sleep -- so many of us have that awful withdrawal insomnia

 

Music for self-care: Calms hyperalertness, anxiety, aids relaxation and sleep

 

What is the sleep cycle?

 

TV or computer use in evening can disrupt sleep: Bright light signals the brain that it's daytime

[bheb]

Thank you! The inner itchiness has died down. Right around the time I had a shift away from physical agitation symptoms and more towards mental out-of-it symptoms. 

[bheb]

Ruling out some other medical stuff since severe dizziness, dr, cog fog, eye focus problems (and more recently fatigue) have persisted since they came on somewhat suddenly this spring. Bloodwork normal, inner ear function normal. Doctor ordered MRI for MS, though i dont seem to have other typical symptoms. We’ll see. Seeming more likely just a shift in my iatrogenic illness/state. 

[Yasko]

I had akathisia last year for about 2 months caused by oxycodone. They put me on suboxone and it helped but due to severe stress and distress I have had some for the last few weeks. I have to get off dexedrine and Im worried it will flame up the aka. Also when I start taper from suboxone I am even scared to think about it. I hope you find something that works for your akathisia permanently.

[bheb]

Thanks. Fingers crossed for you as well. 

[Guest]

Can u quickly let me know if your experiences with cyproheptadine were negative overall or positive ? Will the body recognize it as an antidepressant ? I took some and i felt it set me back a lot, like i just took an ssri....after 10 years in withdrawal this is scaring me quite a lot 

 

Edited November 18, 2020 by Guest
removed quote

[Altostrata]

ryguy, there is no need to quote a post in order to add to a topic.

[bheb]

On 11/17/2020 at 4:18 PM, Ryguy said:

Will the body recognize it as an antidepressant ? I

First, I do not know the answer to this question. Nor really what you mean by it.

 

Overall my experience with cyproheptadine was positive-ineffective long term. I did not have a bad reaction but I’ve heard that others have. I imagine you’ll likely feel better soon. 

[bheb]

In a bit of a setback from doxycycline and possibly erythromycin. Have a pretty tricky infection. Hope this settles soon. 

[Rosetta]

I hope so, too.  💜Rosetta

[bheb]

On 4/18/2021 at 4:04 AM, Rosetta said:

I hope so, too.  💜Rosetta

Thanks Rosetta. Sorry you’re struggling too

[Rosetta]

🦋

[Vonnegutjunky]

 Bheb. Hey. We have a similar story. Right. Ow I’m in this think overwhelming bedridden depression that I haven’t been in for almost 2 years. I was functional through the waves,  now I feel like I can’t focus, I can’t function and I want to cry all day and sleep and wait for this to pass. It’s thick heavy doom and sadness and gloom. So intense I just don’t even want to talk, like this work to talk. 
 

my akathisia has been gone for almost 2 years. But now I’m still cycling through this crap. Sometimes I can’t tell if it’s relapse or what considering I stayed on the med that gave me aka and am still tapering it, down to really low levels. I thought I was stabilizing, now I feel so defeated  

[bheb]

So I'm back to use some of my old akathisia coping techniques. Here's one:

 

If it's starting to flare really really bad (to the point needing to explode/get out of skin immediately), I make myself do some chore. I do this instead of pacing or repetitive movements -- granted, if you are more severe than me, you can only do those movements. I understand chores can be impossible. But if you have any ability, I recommend this approach. I've noticed that aimless repetitive movements can add to the distress signals, making me more conscious of how bad I feel. 

 

If you assign some other meaning to movements, i.e. completion of some chore (which can be repetitive itself!), I find this helps. 

[bheb]

On 4/24/2021 at 4:39 PM, Vonnegutjunky said:

 Bheb. Hey. We have a similar story. Right. Ow I’m in this think overwhelming bedridden depression that I haven’t been in for almost 2 years. I was functional through the waves,  now I feel like I can’t focus, I can’t function and I want to cry all day and sleep and wait for this to pass. It’s thick heavy doom and sadness and gloom. So intense I just don’t even want to talk, like this work to talk. 
 

my akathisia has been gone for almost 2 years. But now I’m still cycling through this crap. Sometimes I can’t tell if it’s relapse or what considering I stayed on the med that gave me aka and am still tapering it, down to really low levels. I thought I was stabilizing, now I feel so defeated  

 

Oops missed this!

 

So sorry 😕. What is it feeling like? Mental terror kind? Or are you switching between depression and akathisia?

 

[Vonnegutjunky]

3 hours ago, bheb said:

 

Oops missed this!

Or are you switching between depression and akathisia?

 

I think the waves are more depressing than aka now - but it’s like being on the verge of aka- also I have ptsd from that time - so I maybe just very wary and over examining my symptoms for now- 

 

also I genuinely think Covid triggered this - 

[bheb]

9 hours ago, Vonnegutjunky said:

I think the waves are more depressing than aka now - but it’s like being on the verge of aka- also I have ptsd from that time - so I maybe just very wary and over examining my symptoms for now- 

 

also I genuinely think Covid triggered this - 

 

Ah yeah I'm also traumatized. Which I think makes it worse -- now that I've sensed danger I'm giving it a lot of fearful attention and developing anxiety centered on it.

 

Ah covid oh no! Yeah definitely could.  

[Alice1]

@bheb

How did the doxy affect your Akathisia?  Did it change it or just increase it ?   I found that the doxy brought on a tremendous amount of black hole terror I never had before.  
 

Is it subsiding at all for you ? 

[bheb]

3 hours ago, Alice1 said:

@bheb

How did the doxy affect your Akathisia?  Did it change it or just increase it ?   I found that the doxy brought on a tremendous amount of black hole terror I never had before.  
 

Is it subsiding at all for you ? 

 

It's complicated. Before my antibiotic treatment I was having more mild terror and apathy/depression than physical akathisia, most days. 

 

What I've found increasing in the weeks after antibiotics is mostly physical. I have more inner itchy need to move. I have more feelings of choked up tension at different points on my body. I also have more urgency in the sense that I feel like I need to explode. This effectively incurs a mental component to it as well. Just overall revved up and agitated. I also noted an uptick in nonspecific, undirected anxiety/weird panic. 

 

Terror has been less since antibiotic treatment and stress. But with me, for some reason, terror and physical aka are at odds. I usually only have one at a time. I don't know why this is. When I have terror I feel paralyzed. I don't feel anxious, I don't feel restless really, I just feel, well, terrified and stuck and deeply disturbed for no reason. But I understand for most people with aka, they co-occur. 

 

Anyway, today actually was a tiny bit better! I had a couple hours of reduced symptoms and ability to work on final assignments. I've been taxing my system with school stress and caffeine so I'm sure I haven't been giving myself the best chance to recover lately.

 

 

[Rosetta]

My God, I’m so sorry, bheb.  The mental aka is something I never want to experience again.  Perhaps your school work, as taxing as it is, is a good distraction from the aka.  I hope so.  Good luck with the end of your semester. -Rosetta

[bheb]

Just now, Rosetta said:

 The mental aka is something I never want to experience again.

 

Right, I thought the same thing before. Fully traumatic. When I've had it recently it has been milder which is good. This past fall/winter saw more severe mental terror days.

 

I'm also a terrible grass is greener reasoner through all this though. Whenever I have one set of symptoms, I beg for the other. 

 

2 minutes ago, Rosetta said:

Perhaps your school work, as taxing as it is, is a good distraction from the aka.  I hope so.  Good luck with the end of your semester.

 

Yes, maybe. Thank you. 

[Lloyd]

I had Akathasia for around 2.5 years. Finally its almost gone - about 90% better. All of a sudden just wasn't there, the switch happened in a few weeks late last year and  that grip just loosened. Not sure what changed. It truly is a miserable thing. I wasn't that bad i had to pace but i found it very difficult to sit still (watch tv etc) unless i was compeltely occupied which is why i played computer games obsesivley.

[bheb]

On 4/27/2021 at 1:15 AM, Lloyd said:

I had Akathasia for around 2.5 years. Finally its almost gone - about 90% better. All of a sudden just wasn't there, the switch happened in a few weeks late last year and  that grip just loosened. Not sure what changed. It truly is a miserable thing. I wasn't that bad i had to pace but i found it very difficult to sit still (watch tv etc) unless i was compeltely occupied which is why i played computer games obsesivley.

Thank you for sharing this. What great news. And the sudden lift! What a miracle feeling.