Hope you feel better soonAm not feeling very good today.
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Hope you feel better soonAm not feeling very good today.
Hope you feel better soon
@Sidereal, thanks for this. Methylphenidate (Ritalin) puts me to sleep, so I should perhaps look into the guanfacine, or something similar (if it exists - and isn't clonidine, which was too hypotensive for me).Dr Goldstein, who has seen it all, was apparently well aware of this phenomenon. Here's an excerpt from the Stimulants chapter in Tuning the Brain (sorry, no page number as I only have the Kindle version).
Only about 25 percent of neurosomatic patients will have a good reaction to stimulants. Otherwise, they will have no reaction at all, even to very high doses, or stimulants will not only surprisingly calm them but will paradoxically make them sleepy or exacerbate their symptoms in general. This response indicates an abnormality of the dopamine transporter or auto-receptor hypersensitivity and also suggests the use of an agent that will inhibit the secretion of catecholamines, such as guanfacine.
Guanfacine is an alpha 2a adrenergic receptor agonist. Seems Goldstein has identified the subgroup here who would (unlike many patients with ME/CFS/dysautonomia who benefit from antagonism of this receptor) do horribly on stuff like yohimbe or mirtazapine.
I can be sitting still all day and my heart will feel like its beating harder and paired with sob. Not taking any supplements. Have tried various vitamins that make me feel worse. What is k+?hi @Kenjie
There could be any number of reasons.
Is your shortness of breath related to effort or are you taking any supplements?
My only experience with SoB and very mild it was is when I had been taking Mg without also taking potassium.
When I took the K+ I felt better.
Ahhh, sorry, K+ is potassium. I should have spelled that out.
Your problem sounds like it could be too much water with not enough electrolytes. Popular health blather goes on and on about getting enough water but for sick people with ME and possibly POTS (postural orthostatic tachycardia syndrome) water simply dilutes the blood and the lack of electrolytes causes symptoms. The solution is to increase Magnesium, potassium and salt. This is a problem for most people with ME.
Here is some info: http://www.dysautonomiainternational.org/page.php?ID=30
There are other kinds of orthostatic intolerance as well. But this should give you an idea.
Hope that helps.
This thread is a continuation from another thread that went off topic. The quotes in this new thread are from the old thread re: neurological issues and the IOM contract. I am not on my own computer and not able to link to the old thread (hoping maybe a moderator can do that?) Tagging the posters from the old thread @zzz @Sidereal @melamine @A.B.
Thank you and this is not my experience so I suspect I am not getting too much magnesium or reacting badly to it.
My arms are incredibly weak and I get severe shortness of breath when I lift things, especially over my head. But lying down relieves the symptoms and I do not ever experience them at rest (with the exception of tachycardia in my sleep which is pure dysautonomia as far as I know) and totally different (in my case) then the severe shortness of breath that I get from exertion.
I got severe over-methylation reaction and cannot tolerate folate or B-12 but I have zero reaction to CoQ10 or D Ribose. None of them made me weaker but none have helped either.