toddm1960

DRINK.....DRINK......DRINK

****..........I fit normal flow POTS to a tee, but when I tried tumeric I felt totaly rotten. I stopped taking it and within 24 hours was back to my normal crappy self Good article though ram, it's nice to see there is some research going on for POTS.

I started in my late teens so that would make right around 30 years, and then within 9 months I was diagnosed with both dysautonomia and mitochondrial disease.

I get mine mostly from standing, but here and there it will happen when I'm sitting or laying down.. The worst is when it happens at night, then I'm totaly wide awake. I agree that is like a switch flips on.

That is exactly how it feels. Each time it happens to me I tell my wife.......people pay alot of money to feel like this......LOL When it first happened I was worried about it and then I'm sure kicked into panic mode. Now I just relax and go with the flow.

It's so good to hear you're feeling better.......... I've had two remissions, each lasting about 6 months. The first time in 1987 I came back to about 75% of my self, the second in 1999 I came back to about 50%. Neither time did I change anything.......it just happened. Enjoy every minute of feeling well, don't look back. I dream everyday that I'll get another......

I'll toss a male side of this flushing, I get the exact same things going on. I've had carcinoid ,pheochromocytoma ruled out, could be MCAD but haven't tested positive for anything yet. At least I don't have endure doctors telling my it's menopause or post menopausal things My guess is that's it's dysautonomia messing up endocrine system.......like everything else

I hate to say it, but this how 95% of all doctors today are. Good doctors are rare and few and far between. Do not think twice about firing the bad ones and moving on, remember they are our employees, we hire them. I'll leave my rant at that......

I'm A- Maybe you should start a poll.......easy for me to say, I don't know how to do one

I'm alot like Sue, my standing is broken into 5 minute spurts. My big outburst each week is to go grocery shopping, I can get through the store in about 20 minutes. I'm a little better being able to lean on a cart. Other than that I live in reclinerville 24/7

Whew......I feel better now Igail, glad you're still among us I used to tell everyone that I'm living my life like a 70 year old....until my mother and mother in law who are both 71 could out do me hands down. Saddly now I have to say I'm living (and thinking) like an 80 year old.

**** we lost our one vote in the 60 - 70 age range.....hope we didn't lose the person. I feel like I'm 80, does that count?

I haven't had a normal day or half day for that matter in a few years

I have this all the time also, I call it my wet noodle legs / arms. I'm not sure if a POTS things or a mito thing.

It's half the reason I had to stop working Please don't feel alone with one, brain fog like this is in the top 5 for worst symptoms for sure.

Exhaustion please

Two excellent polls, I'm going to be watching these as more members vote. Thank you they're a great idea.

I have these same symptoms, but thought of them as a neurological thing. That tingly rush running down one side or both from my head to my feet.

It's only natural to have swallowing problems, our autonomic nervous system controls the smooth muscles of our esophagus. I had an esophageal monomitry after having swallowing/breathing problems. My esophagus doesn't work in a normal parastolic wave, it jumps in fits and starts. Spasms at times and in places it shouldn't, the smallest of pills or water and get stuck in these. Many of us have GERD because our lower esophageal sphincter pressure is very low, allowing all of our stomach acids to flow back up cause even more problems swallowing. Get on your GI guy to do or find someone that will do an esophageal monomitry, it can answer many of your questions.

The neuro I saw in Rochester, NY ran the ANSAR testing at the same time as my TTT. It's one good reason to find a neurologist to administer your TTT and not a cardiologist, not many cardios will run the ANSAR.

Good luck, let us know how it goes. I've worried about getting called myself.

I do believe in CFS but because of the CDC and the push to make it out to be a psychiatic disease, as soon as I had other confirmed diagnoses I dropped CFS. Why let lazy doctors who couldn't find anything wrong with me tell it's CFS and I'm making it all up. Then stop looking for what was really wrong. I think there will be a day when there is a test for CFS, and could some of us have POTS and CFS.........sure. But until then why bother with a disease most doctors ignor, and stop treating you.

Sue1234 that's exactly why I gave up my desk job, so I think it fits perfectly for me.

Be sure to tell them even sittingup right makes it hard to think clearly, that you may have to recline or laydown for periods of the day.

I've carried a CFS diagnosis for 10 years (I'm also chronic EBV), as of today there is no diagnostic test for CFS (I do think they'll end up with one) So this diagnosis is one of exclusion, once I was positive for POTS and mitochondrial disease there is now a cause for my exhuastion......so CFS was dropped.