ME sufferers prone to Akathisia?

[MarkRichardson]

I was just watching a video on Akathisia (a sense of doom, restlessness, struggling to keep still and wanting to jump out of your own skin) and apparently Encephalitis can cause Akathisia.

Does this then mean Myalgic Encephalitis sufferers could suffer from Akathasia? Regardless of wether they are on drugs/ medications that can cause Akathisia.

It may explain some anxiety type attacks I experienced before I was put on antidepressants.

Also apparently one of the type of drugs that can treat Akathisia include dopamine agonists and it is my suspicion that I have degraded Dopamine neurotransmitter levels for various reasons.

I had thought the degraded dopamine levels were responsible for the empty/numb feeling that I get but that leaves me more stuck and unable to move so perhaps that symptom is more degraded serotonin levels.

Of course I could be misunderstanding everything and throwing a load of random things together to reach incorrect conclusions.

Anyway Akathisia is usually pretty horrible and like ME not known about or understood by the majority of doctors who may attribute it to anxiety or restless leg syndrome, unfortunately in extreme cases it can lead to self harm, violence or suicide. So worth a watch of the video if unfamiliar with it IMO.

 

[Alvin2]

Its hard to say, Akathisia and Tardive Dyskinesia have been studied for a long time and there is no consensus on who is more likely to get them or even universally effective treatments.

 

[MarkRichardson]

Its hard to say, Akathisia and Tardive Dyskinesia have been studied for a long time and there is no consensus on who is more likely to get them or even universally effective treatments.

The impression I got from the video is that there are a few illnesses where Aka can occur without any use of meds/supplements etc. I guess it would come down to what the common denominator is, ie. inflammation of the brain which could occur in different people with different illnesses?

 

[Alvin2]

The impression I got from the video is that there are a few illnesses where Aka can occur without any use of meds/supplements etc. I guess it would come down to what the common denominator is, ie. inflammation of the brain which could occur in different people with different illnesses?

I'm not able to watch the video but have been following this stuff for many years

 

[MarkRichardson]

I'm not able to watch the video but have been following this stuff for many years

are there people who are not taking any medications or supplements that alter neurotransmitter levels that get Akathisia? It seems that this may be happening to ME patients.

 

[Alvin2]

are there people who are not taking any medications or supplements that alter neurotransmitter levels that get Akathisia? It seems that this may be happening to ME patients.

Its rather uncommon.
But quite common for those on neuroleptic drugs, antidepressants and not unheard of with sleeping pills.

 

[katabasis]

While I'm not sure that many ME/CFS sufferers truly have akathisia, I do think you're onto something in terms of some ME/CFS being akin to akathisia in some way. At least subjectively, when I experience PEM it tends to make me feel irritated or agitated in a way that seems similar to akathisia. There's also an interesting parallel with the role of serotonin (5HT) in both akathisia and ME/CFS. Some of the research into the role of CRF in ME/CFS suggests that CRF dysregulation may cause an uncontrolled increase in "threat specific release of 5HT", the mechanism also involving a dysfunction in 5HT1A receptors. Meanwhile, SSRIs are among the more common drugs the cause akathisia. This is known to occur more commonly during the early stages of treatment, before 5HT1A receptors have a chance to adapt to the increased serotonin levels.

As you point out, dopamine agonists typically reduce or resolve akathisia. One of the more popular dopamine agonists for this indication would be pramipexole. Interestingly, this drug, which is a potent D2/D3 partial agonist, has been shown to have some efficacy in fibromyalgia, a disease which is a close cousin to ME/CFS. Similarly, low doses of aripiprazole (Abilify) have been used to treat ME/CFS, and though the mechanism of action is complicated, it probably involves dopamine. Aripiprazole is a partial agonist at D2/D3 receptors and especially when used at low doses may increase dopaminergic signaling (it was even investigated for treating ADHD, which is also characterized by decreased dopaminergic signaling). I haven't personally tried either of those drugs, but I do take memantine, which is a D2 agonist, though it has many of other mechanisms which could be causing some benefit for me.

I wonder if there are any drugs which upregulate 5HT1A receptors, which should theoretically decrease 5HT release, possibly including the 'threat specific release' that seems to occur in ME/CFS. More commonly, researchers have sought drugs that desensitize 5HT1A (such as SSRIs), as this seems to be an effective treatment modality for anxiety and depression.

 

[Countrygirl]

Its rather uncommon.
But quite common for those on neuroleptic drugs, antidepressants and not unheard of with sleeping pills.

I recall I had a reaction similar to that when I started zolpidem. I felt it was like an exacerbation of the wired sensation we have. It was really horrible and I had a friend who committed suicide when he developed it. I quite understand why he was driven to this as it does feel intolerable.

I also experienced something similar when I withdrew from baclofen.

 

[judyinthesky]

Its rather uncommon.
But quite common for those on neuroleptic drugs, antidepressants and not unheard of with sleeping pills.

I would say that I am.
I have not been on any drugs other than thyroid hormones and I don't think what I experienced was exactly akathasia, but my nervous system switched into constant fight or flight mode after start of pancreas illness and hyperthyroidism.

I've never been the same and have an extreme psychiatric component with it. Not used any antidepressants etc. Ever before. Also never a Xanax.

 

[Judee]

Not sure if this would be helpful but this study says there is a subtype of patients where benzos can cause a paradoxical benzodiazepine-induced akathisia in, "...patients with traumatic encephalopathy and seizure disorders.

https://pubmed.ncbi.nlm.nih.gov/24487139/

 

[judyinthesky]

I was just watching a video on Akathisia (a sense of doom, restlessness, struggling to keep still and wanting to jump out of your own skin) and apparently Encephalitis can cause Akathisia.

Does this then mean Myalgic Encephalitis sufferers could suffer from Akathasia? Regardless of wether they are on drugs/ medications that can cause Akathisia.

It may explain some anxiety type attacks I experienced before I was put on antidepressants.

Also apparently one of the type of drugs that can treat Akathisia include dopamine agonists and it is my suspicion that I have degraded Dopamine neurotransmitter levels for various reasons.

I had thought the degraded dopamine levels were responsible for the empty/numb feeling that I get but that leaves me more stuck and unable to move so perhaps that symptom is more degraded serotonin levels.

Of course I could be misunderstanding everything and throwing a load of random things together to reach incorrect conclusions.

Anyway Akathisia is usually pretty horrible and like ME not known about or understood by the majority of doctors who may attribute it to anxiety or restless leg syndrome, unfortunately in extreme cases it can lead to self harm, violence or suicide. So worth a watch of the video if unfamiliar with it IMO.

Have you measured your dopamine levels? Or catecholamines?

 

[Alvin2]

I would say that I am.
I have not been on any drugs other than thyroid hormones and I don't think what I experienced was exactly akathasia, but my nervous system switched into constant fight or flight mode after start of pancreas illness and hyperthyroidism.

I've never been the same and have an extreme psychiatric component with it. Not used any antidepressants etc. Ever before. Also never a Xanax.

I'm so sorry to hear about this

 

[vision blue]

Not sure if this would be helpful but this study says there is a subtype of patients where benzos can cause a paradoxical benzodiazepine-induced akathisia in, "...patients with traumatic encephalopathy and seizure disorders.

https://pubmed.ncbi.nlm.nih.gov/24487139/

OMG. Am really glad you posted that. I was lazily reading this thread that came up when i entered “dopamine” in search field and was thinking hey this condition sounds exactly what i experienced in the ER when given benzodiazepam/valium by IV. Will read the article.

Was also wondering if my current usual state is a milder variant of this but note my dopamine is high not low.

 

[vision blue]

Have you measured your dopamine levels? Or catecholamines?

I have. Dopamine currently high. In past metenephrines and normeteneohrines high. And currently norepinephrine to epinephrine ratio just under high cutoff.

 

[judyinthesky]

I have. Dopamine currently high. In past metenephrines and normeteneohrines high. And currently norepinephrine to epinephrine ratio just under high cutoff.

My Adrenaline and noradrenaline are always low
Dopamine was one time high one time low
Same for serotonin

 

[Broken.butterfly]

I am experiencing akathisia right now and it is absolute torture. It happened post covid and I wasn't ever on any medication. I did take x2 mirtazipine pills as my first symtom post covid was insomnia / sleep jerks but there didn't seem to be an obvious correlation to taking the Mirt and developing akathisia. It is honestly hell and im praying I come out of it.

 

[katabasis]

I am experiencing akathisia right now and it is absolute torture. It happened post covid and I wasn't ever on any medication. I did take x2 mirtazipine pills as my first symtom post covid was insomnia / sleep jerks but there didn't seem to be an obvious correlation to taking the Mirt and developing akathisia. It is honestly hell and im praying I come out of it.

Sorry to hear you are going through this. You should know that the first line treatments for akathisia are often benzos (e.g. lorazepam) and beta blockers (e.g. propranolol). These drugs are also sometimes helpful for people for ME/CFS without akathisia. Not sure if you've tried them but it could be worth a shot. It's often a bad idea to take benzos long term, but if you take them for only 3-4 days you won't have too bad of a withdrawal, and this might give you a time frame to set up doctor appointments or whatever else you need to do to handle your situation in general.

 

[Broken.butterfly]

Sorry to hear you are going through this. You should know that the first line treatments for akathisia are often benzos (e.g. lorazepam) and beta blockers (e.g. propranolol). These drugs are also sometimes helpful for people for ME/CFS without akathisia. Not sure if you've tried them but it could be worth a shot. It's often a bad idea to take benzos long term, but if you take them for only 3-4 days you won't have too bad of a withdrawal, and this might give you a time frame to set up doctor appointments or whatever else you need to do to handle your situation in general.

Sorry to hear you are going through this. You should know that the first line treatments for akathisia are often benzos (e.g. lorazepam) and beta blockers (e.g. propranolol). These drugs are also sometimes helpful for people for ME/CFS without akathisia. Not sure if you've tried them but it could be worth a shot. It's often a bad idea to take benzos long term, but if you take them for only 3-4 days you won't have too bad of a withdrawal, and this might give you a time frame to set up doctor appointments or whatever else you need to do to handle your situation in general.

Thank you for your comment. I have diazepam / valium reserved for emergencies but it only just takes the edge off and as you allude to, shouldn't be used too often. Its gone from 110% intensity (causing me to want to end it all) down to about 60% so all I can do is have faith that it will continue to go that way.