Anyone else in physical discomfort 24/7?

[kushami]

@sb4, I’m sorry those helpful things wore off.

Obviously it’s an unknown in you personally, but how long do the effects of an SGB tend to last?

Edited to add: I just stumbled upon someone mentioning that it improves cerebral blood flow. Maybe I should try one. I’d have to go private too. There is a decidedly iffy expensive functional medicine place in Melbourne that probably hands them out. I have contemplated going there in the past. (Not that I think SGBs are iffy, rather that the doctors there prescribe a mix of pseudoscience and actual treatments in a random manner – or shall we say a profitable manner.)

 

[sb4]

@kushami The effects of SGB vary. It can last a couple hrs to months. Sometimes it can be permeant if it "breaks the loop". Could also not work at all.

For me it could be somewhat diagnosis even if its not lasting. If I feel so much better I will know what I should be treating. If I feel much better sitting down but have higher heart rate on standing that would be useful to know also, its a compensation mechanism.

I am actually hoping my bodies in some sort of sympathetic loop. Like my POTS is caused by immune dysfunction, my body responds with increased adrenaline which worsens immune dysfunction and POTS. If I break the loop it just rewires to a new baseline. Thats the hope, though very unlikely.

 

[Violeta]

@sb4, have you ever read about: The M3 muscarinic receptor (M3R) (M3AchR) plays a role in gastroparesis, although its precise function is still under investigation. M3Rs are involved in gastric motility and secretion, and disruptions in their function can contribute to the delayed stomach emptying characteristic of gastroparesis.

 

[sb4]

@sb4, have you ever read about: The M3 muscarinic receptor (M3R) (M3AchR) plays a role in gastroparesis, although its precise function is still under investigation. M3Rs are involved in gastric motility and secretion, and disruptions in their function can contribute to the delayed stomach emptying characteristic of gastroparesis.

Actually yeah, great minds think alike , I was recently reading a paper on the Beta 2 Adrenergic Recepter decensitisation causing CFS / POTS and it mentions the other main recepter involved in vasodialation was M3.

I did the cell trend test years ago and all my antibodies against beta adrenergic receptors and muscarinic receptors where negative. They where all very low except M3 and M4 where just below the at risk range. I think it's probably nothing but something in my brain is wandering how accurate the tests were and if the particular antibodies being relatively higher against M3 could cause dysfunction.

I did take take some medication, bethanechol, which I think is used in these conditions and it didn't help. Having said that I'm now in mestinon which is helping my gastroparesis.

I have had a really terrible last 8 months or so, in high levels of discomfort from the heart pounding super hard in my chest, neck and stomach 24/7. I'm pretty confident it's adrenaline / the sympathetic nervous system being jammed on 24/7 but I can't figure out why.

Is it a PTSD like response my brain developed from that initial infection or is there something like endothelial dysfunction thats causing my heart to beat harder to get the oxygen where it's needed.

I'll attach videos of my pulse.

Anyway, this past week or so I have picked up quite a bit, pulse is much calmer and my quality of life has improved as a result. The main changes have been:
Progest E 5mg in the morning.
Low Carb breakfast (did experiment for a few weeks with overnight oats).
Higher calorie intake.
Weather change (it's been super sunny here in Sheffield UK for almost 2 weeks now).

I personally think/hope it's the progesterone. I started taking it because it is supposed to calm the sympathetic nervous system. It opposes cortisol, estrogen, and crosses the BBB to increase gaba.

My stomach pulsating
My neck pulsating

 

[Rufous McKinney]

I personally think/hope it's the progesterone. I started taking it because it is supposed to calm the sympathetic nervous system. It opposes cortisol, estrogen, and crosses the BBB to increase gaba.

That is interesing....I seem to think you are a male, and if so, how fascinating the progesterone creme. I used to use it during menopause but stopped.

 

[Violeta]

Do you have excess vasodilation or the opposite? These types of issues that involve receptors, antibodies, and autoantibodies confuse me.

Sometimes I can only understand the bottom line. I found the information about the muscarinic receptor 3 because of something mariovitali posted on Twitter. I was amazed to see that it's involved in dry eye and dry mouth. My husband has both and my daughter has dry mouth. The remedy is simply choline or phosphatidycholine. When I showed them the info yesterday, they both started taking choline. We'll see if it helps. I don't know if it would help you because I don't know enough about it, but I thought that was interesting about the gastroparesis.

I'm glad you figured out a remedy and that you are getting some relief. And that is very interesting about the Progest e.

 

[sb4]

That is interesing....I seem to think you are a male, and if so, how fascinating the progesterone creme. I used to use it during menopause but stopped.

Yeah men produce 1-5mg apparently. It should be pretty safe unless taking insane doses. I'm not 100% sure it is the progesterone but thats what makes most sense to me.
Theres stuff online about bio indentical progesterone being very differen't to synthetic. Though if it is calming the nervous system it may be more beneficial to my issues than people with ME.
I did read a story on Reddit where a woman took very high doses of progesterone and achieved remission from ME/CFS

 

[sb4]

@Violeta Yeah M3 is responsible for dry mouth and eyes and slow digestion. The problem is, being in a sympathetic state is also responsible for these things so its difficult trying to figure out which is which. I've been taking a form of choline for 4 months now. Not sure if its doing anything.

 

[Rufous McKinney]

bio indentical progesterone being very differen't to synthetic

I used the bio-identical progesterone which they make in a lab. Perhaps they start out with the wild yam and change it into bio-identical. It's been awhile since I thought about all that.

Women have testorerone. So we aren't so different from one another.