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Severe restlessness / akathisia - neuroinflammation post covid?

Messages
12
Does anyone or has anyone ever experienced a bout of akathisia / severe restlessness without taking any meds?

I have had ME for nearly 10 years, mild to severe and everything in-between. I know suffering, vertigo, gastroparesis, hemiplegic migraine, restless legs, dysautonomia, the list goes on. But since covid my life has been torture.

Feb - covid
March - Hypnic Jerks / insomnia
April - anxiety / derealisation. Took 4 mirtazipine pills for sleep
May - things worsened and then developed akathisia

Akathisia symptoms - severe restlessness, burning skin, adrenaline dumps, want to crawl out of body and run away, panic, pain everywhere, agony everywhere, blurred vision, can't sleep, can't eat, can't relax, can't focus, can't think.

Akathisia is usually as a result of pharmaceuticals, worst offenders being SSRI's and anti nausea meds. There didn't seem to be a correlation with my taking mirtazipine as the restlessness developed over a week later.

I am considering my symptoms as being a result of neuroinflammation post covid, But what do I do? Will it go away by itself? Has anyone else experienced this? Any suggestions? anything at all, honestly.. i'm so desperate.
 

Judee

Psalm 46:1-3
Messages
4,535
Location
Great Lakes
This may be a bunch of "bandaid for a gaping wound" suggestions but I find that Cordyceps calms me and it is noted for lowering brain inflammation per this SITE.

Also Ken Lassessen says boswellia is neuroprotective and EBV antiviral as well as calling it the "poor man's heparin." Anyway, I do notice it makes my swollen brain feeling go down about 40-60% when I take it.

Lastly, niacinamide is suppose to have some benzo type properties and this SITE says, "All the way back in 1979 we knew that niacinamide was able to relax animals and had “Benzodiazepine-like actions” (benzodiazepines are drugs such as Xanax and Valium commonly used to treat anxiety).(3) In fact, it was later shown that niacinamide actually binds to an atypical part of the benzodiazepine receptor.

I'm not on any prescription medications but I did find that niacinamide (not niacin) helps me on my absolutely necessary errand days. Otherwise, I'm almost completely housebound by this disease now. :(

I don't have a lot of issues with panic attacks and anxiety like I used to but I do feel restless and OCD/ADHD a lot.

One thing that calms that (in addition to the cordyceps) is caffeine. which is one of the reason's why I think I am ADHD (among other things).

Of course, for a lot of people caffeine can cause hyperness and feeling too wired so please use extreme caution with this and/or any of the things I mentioned.

**Please clear everything and anything with your doctor and pharmacist.**

One thread recently speculated that caffeine may help with OI (orthostatic intolerance) issues and low bp. Both of which I have.

I believe it was Dr Chaney who first made the connection between OI/POTS and panic attacks.

Anyway, I hope you can find something that helps. I do remember my severe panic attacks in my 20s and 30s and they were horrendous. I'm sorry you're going through that.

Edit: Don't forget liver detox things like artichoke and milk thistle. I even had artichoke take away a migraine once. :)
 
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Irat

Senior Member
Messages
288
Does anyone or has anyone ever experienced a bout of akathisia / severe restlessness without taking any meds?

I have had ME for nearly 10 years, mild to severe and everything in-between. I know suffering, vertigo, gastroparesis, hemiplegic migraine, restless legs, dysautonomia, the list goes on. But since covid my life has been torture.

Feb - covid
March - Hypnic Jerks / insomnia
April - anxiety / derealisation. Took 4 mirtazipine pills for sleep
May - things worsened and then developed akathisia

Akathisia symptoms - severe restlessness, burning skin, adrenaline dumps, want to crawl out of body and run away, panic, pain everywhere, agony everywhere, blurred vision, can't sleep, can't eat, can't relax, can't focus, can't think.

Akathisia is usually as a result of pharmaceuticals, worst offenders being SSRI's and anti nausea meds. There didn't seem to be a correlation with my taking mirtazipine as the restlessness developed over a week later.

I am considering my symptoms as being a result of neuroinflammation post covid, But what do I do? Will it go away by itself? Has anyone else experienced this? Any suggestions? anything at all, honestly.. i'm so desperate.
Akathesia can start weeks after stopping a psych drug,even when taken only few days ,so it could be the mirtazepine.but could be covid alone too .
 
Messages
12
Akathesia can start weeks after stopping a psych drug,even when taken only few days ,so it could be the mirtazepine.but could be covid alone too .

Thank you for your comment. What can I do? Is there any testing I should get? Is there anything I can do to help myself recover? Thank you.
 

Crux

Senior Member
Messages
1,441
Location
USA
It looks like mirtazapine is also an anticholinergic drug:

https://www.beingpatient.com/anticholinergic-medications-increase-dementia-risk

List of Anticholinergic Drugs
Some of the strongest anticholinergic drugs include antihistamines, sleeping pills, tricyclic antidepressants, and drugs to treat an overactive bladder.
Common anticholinergic drugs include Benadryl, Dimetapp, Sinequan (doxepin), Paxil (paroxetine), Desyrel (trazodone), Remeron (mirtazapine), Enablex (darifenacin), Toviaz (fesoterodine), Urispas (flavoxate), Ditropan (oxybutynin).

I've done poorly with anticholinergics. Had a full blown manic episode with mirtazapine.

Now I've increased choline with food and citicoline supplement, and am stable.

I see there are various opinions about mirtazapine being an anticholinergic. All I know is I had that manic episode from it .
 

Irat

Senior Member
Messages
288
Thank you for your comment. What can I do? Is there any testing I should get? Is there anything I can do to help myself recover? Thank you.
I m (had been) severly damaged from an SSRI 12 years ago and had akathesia for more than 2 years..,.,you can join "surviving antidepressant forum"......but if you want my opinion: never ever in your life touch any psychopharmaka again,....no there are no test,you waste your time...if it's the mirtazepin you will recover from akathesia...but I can t tell you how long it will last and what else follows.it took me more than 6 years to recover .leave your nervous system alone in this acute state,you could kindle with everything you try ,.or have a paradox reaction ...t will get better.....if it's from covid ,well I don t know ,just be very very careful taking any supplements,whatsoever.i would not touch anything.
 
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Judee

Psalm 46:1-3
Messages
4,535
Location
Great Lakes
Thank you for your comment. What can I do? Is there any testing I should get? Is there anything I can do to help myself recover? Thank you.

Did your akathisia go away? I am experiencing something similar after taking Paxil for 5 months and a benzo for 10 days only.
There is a group called the akathesia alliance. They may have some suggestions.

I linked their website on this thread: https://forums.phoenixrising.me/thr...rological-damage-from-some-medications.91177/
 

Kailyn

Caregiver of a person with very severe ME/CFS
Messages
65
Did your akathisia go away? I am experiencing something similar after taking Paxil for 5 months and a benzo for 10 days only.
I am considering my symptoms as being a result of neuroinflammation post covid, But what do I do?

I'm really curious too. Well, more than curious. Damn hungry to know more!

My husband has been struggling with these symptoms EXACTLY. Akathisia is a new term for us. We hadn't run into it with the other descriptions of very severe cases.

Honestly, the symptoms @Broken.butterfly listed match better than the characteristics of being very severe, as listed on this article. (He doesn't have the muscle weakness or brain fog / cognitive impairment, and just barely qualifies for sleep disturbance.)

And the ones on Akathisia Alliance matched extremely well too. Thank you for the link @Judee

There's no clear link between his akathisia and a medication. He experienced these symptoms before getting on LDN, and before he tried effexor. He hasn't been able to stick with effexor, because he keeps getting increased PEM sensitivity from even small doses. He has also only taken a benzo once during this period- something he was prescribed by his original PCP, who thought his ME/CFS was psychological. He has taken benadryl (I saw the note above,) but it would have to be a very delayed onset of akathisia...

Is it possible that it is inherent to some cases of ME/CFS? Or, do people feel like its much more likely this is a complication from a medication or supplement?
 

SpinachHands

Senior Member
Messages
101
Location
United Kingdom
My husband has been struggling with these symptoms EXACTLY.
We keep running into eachother on the same threads, our partners really are similar! 😅

This sounds very like what my partner is experiencing at the moment, which I've been going on the guess as a kind of dysautonomia with their sympathetic nervous system. It came about after an increase in their LDN dose, which doesn't seem to commonly cause akathisia, but may still have affected their body/brain similarly. It's been like their sympathetic nervous system is in absolute overdrive. (With their parasympathetic occasionally overcompensating too)

Nothing so far has really helped, or has only been a temporary mild symptom reliever (magnesium, vitamin B12, vit B-complex, Vit D, pharmaGABA, Taurine, L-Theanine, CBD oil, occasional valium or codiene, valerian root tea, vagus nerve stimulation). The only thing my doctor has been able to suggest (apart from Montelukast to help with the increased asthma this has caused) is Mirtazapine. I've been reading some threads on here which makes it seem like it could help, even just with sleep, but now I'm also worried about chucking too much at their system seeing @Irat 's comment.

It's been nearly three weeks now with them unable to rest, and they're really losing their mind. The options left are risk a new medicine that could maybe calm their system down but maybe make things worse, or leave it and wait (which is terrifying to my partner because I have no estimate of how long they'll have to wait). I'm speaking to the GP tomorrow so have until then to decide...
 

Kailyn

Caregiver of a person with very severe ME/CFS
Messages
65
@SpinachHands

So glad you bumped this thread back into my life.

And Josh's struggles with this are also correlated with him going up from 3 mg of LDN, to 3.5 mg LDN. He's actually backed down to taking 3.375 mg (achieved by taking 1/4 and a 1/8 of a pill) because the sympathetic nervous system energizing effects were so intolerable.

Josh is still struggling with this, but 10 days in, I think we've found a med that works for us: amitriptyline.

Our doctor recommended it, and then a few days later, I finally watched the Workwell Foundation Severe ME/CFS videos, and it was the #1 recommended med as well. I'm surprised I hadn't heard of it more, up to this point.

We're still titrating up, and are at 10 mg twice daily. Josh is frustrated he can't titrate up faster, but we've universally gotten recommendations that amitriptyline can sometimes be pretty variable in the body while its new.

But he's specifically felt like it has helped with the restless, uncontrollable energy, "flight or flight" feelings, panic, and burning sensations. He's also felt like its made LDN more manageable, and that LDN has specifically been helping with fibromyalgic pain at the higher dosage. (He's learned this from days with bad pill splits, unfortunately, when a dosage of LDN was either too high or too low.)
 
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