docradmd

I get that. Typically in afternoon. Things that help me: less caffeine, oral magnesium, aspirin-low dose daily aspirin

its essentially erythromelalgia.

Rama,

What's your med regimen?

Arizona girl,

What were your causes?

My dysautonomia started after starting synthroid for hashimotos.

Maybe it's relaxing your brain and sympathetics with it.

Kitt,

Would you mind sharing some of those sleep instructions or tips with us?

Thanks

I do crossfit 2-3 times a week mixed with regular bike, recumbent bike, and rowing. It's helped a lot with tachycardia. I don't need meds to be upright .

I supposedly have mild classical EDS.

My biggest issue is still GI with slow motility and bloating .

I have also cut out simple sugars and gluten. I would notice more tachycardia with desserts and sweets. try to eat Lots of protein, cheese, nuts, fruit.

Supplements: vit c, coq10, magnesium, vit e, vit d, multi vit, vit b1, vit B5

I hope not. Heavens bound to be infinitely better than this state.

You may have EDS, ESP with joint pains.

My Tachycardia has dramatically improved with exercise. There are days when tachycardia is non existent. Now , I mainly deal with GI issues- gastroparesis and slow motility-- which improve when I'm Laying down. I still get the skin color changes when upright from pooling. Yes my symptoms have changed. I supposedly have EDS as etiology. I wish it would all go away.

Chiari maybe? Intracranial pressure elevation from fluids and salt? Just thoughts,

Maybe. A 1:80 pattern is weakly positive but not very specific to any one disease process. I also have a 1:80 pattern and it was blown off. Only with higher titers do they run more tests. Maybe it's worth following. I also have Hashimoto's thyroiditis which could possibly be the etiology as well.

Anyone get burning skin sensations with the dysautonomia?

Who's got it? Did you ever get it to go away. Some say intense exercise helps it.

Rama, what's your understanding of it? Blood pooling from vein laxity or intense arterial vasoconstriction?

I'm in this boat too. The big change for me is also working out. I have also had more low dull headaches which may or may not intensify to full blown migraines. Still struggling with slow gut issues. I take multivitamin, vitamin c, b-12, b-1, Vit d, vit e. I also eat coconut oil more

My pots manifests itself in GI issues mainly. On the days I work out it aggrevates my symptoms. As time progresses since my last workout, the symptoms lighten up. Exercise just revs up the sympathetic system- at least for me. Try not working out a few days and see if symptoms get better . That's why I workout every other day - at least for now

Has anyone actually read the full article? How did you access more than just the abstract without paying for it?

I have been exercising and noticed improvement in my heart rate. I still have some blood pooling in my skin but my gut issues which started with POTS have not gotten much better. Shouldn't it all get better together? My gut only works normally when I'm laying down or on my side. It's like my entire GI system just shuts down if I'm upright or even sitting up. Did anyone's GI symptoms get better with exercise?

Has anyone had exercise reverse the gastroparesis and poor motility. These are my worst symptoms although what's interesting is that it took about 6 mo or so for them to appear. When I was first diagnosed I had little to no GI symptoms.

My wife got me a trainer to help with exercise but it seems like I overdo the exercise and it seems to flair the gut issues .

It's either pain reduction and /or decreased prostaglandin synthesis (which vasodilate)

PPI's and the H2 blockers have also been shown to have cholinergic effects. A component of parasympathetic and increased vagal tone may also be at play here as well as decreased NO production.

Dave, Do you think your symptoms may also be related to gastroparesis and slow motility?

The GI symptoms didnt hit me until 3-4 months after the POTs diagnosis/tilt test etc. Perhaps a motility agent may help and/or gastroparesis diet. Just a thought. It was researching motility agents that led me to the cholinergic effects of the PPI's and H2 blockers.

To me it looks like retroflexed odontoid. Borderline chiari.

Looks like my scan. Pots and EDS

Thanks for posting. Great lecture and probably the reason for my POTs. Cranial settling.

I'm here. Never the supreme athlete but smart as a whip, geeky, and type A driven. Now with an excellent job which fortunately I can do sitting down. Still wrestling with POTS which came up 9 mo ago followed by gastroparesis. My family and wife dismiss it. My father dismisses the EDS that he passed on to me. He fortunately doesn't have POTS. My life really does **** now with POTS---I miss my old health.

I was diagnosed with POTS about 6 months ago. That led to EDS Classical diagnosis which was never an issue until the POTS came along. Also have Hashimotos.

I didnt develop Gastroparesis and slow motility until recently. Funny thing is my stomach and guts start working as soon as I lay down. This clearly argues to me that its related to the dysautonomia.

Anyone else have this? Does anything work besides laying down? I work a full schedule and taking a few minutes to lay down at the office really isnt that feasible.

Thanks