toddm1960

A week late 10 lb baby, I'll never hear the end of it from my mother.......lol.

Mine always feel like the to contrast IV you get when having a CT scan, that warm/hot feeling from your chest up. They come at anytime and last for minutes or hours. Doesn't worry me anymore, but my family now sees the beet red face and chest and knows I'm feeling well.

I am orthostatic hypertensive and when I don't sleep on a tilted bed it feels like blood pools in my head. My sinuses are full and I feel like my head will burst. On my king I took a 4X4 and cut it 76" long and layed it all the way across the head of the bed frame. Very solid and works great for me. This is just like everything else, what helps half of us makes the other half worse.

I get them in my hands and feet also, like bee stings. I also get the electrical crawalies, like goose bumps in a big wave over any part of my body. All fun parts of dysautonomia.

Sorry you haven't been feeling well Shell, nice to see you back. I take Xanax for esophageal spasms and it also seems to lessen some of my POTS symptoms. It always gives me a little boost in energy also. Good luck and hope you feel better.

I've stopped using the word fatigue, this isn't fatigue. When you're fatigued you can sit for a minute and get back up going. This is bone crushing exhuastion, and like everyone has said when it's at it's worst you can't sleep or even lay down and relax. No one has been able to tell me why it's like this, but I hate the looks I get from doctors when I say fatigue. It helps now to have a POTS dx, but not much since most of the doctors I see don't really know what it is. It does feel better to know I share this with many of you out there.

Tachy, Welcome to the team, you'll find the best people in the world here........ Stats: Supine 110ish / 60ish HR 65ish Standing 130ish / 100ish HR 130ish

I have wet dreams about being able to lift again someday.........lol. It's what I miss the most about having POTS. At first I fought hard to not give in and created an all sitting workout routine, but the holding pressure it takes to workout just wiped me out. I don't last 5 minutes trying to lift, I was dizzy, weak, shaky and sick to my stomach. Not sure if lifting and dysautonomia will ever mix.

HI Jan, Don't feel alone with these, I have the exact same things going on and was treated the same way by my docs. After almost 4 years of this going on it doesn't even bother me anymore, you'll just find me in bed relaxing once they start.

Janey you're exactly right, those of us with motility issues work that much harder and that's part of the problem. It's almost like the valsalva maneuver when doing the TTT, any time I have to bear down like that lifting something it wipes me out. Sorry I don't know of anything that helps either, but I'm right there with you.

Kits, Have any of your doctors looked into a mitochondrial cause?

Hi Janey, Welcome to the forum, you're going to find great people and tons of information here. It was and still is a life saver for me, just to know there are others feeling the same things I have has made a huge difference. The only advise I have is to stay positive, it's never as bad as is seems and tomorrow can always be a better day.

Another example of a treatment / drug that helps half of us, but makes the other half worse. I may give this a try as I'm orthostatic hypertensive, always great information on this forum.

I'll be the first: My worst symptom is exhaustion, extreme exhaustion, HR in the 120 when standing. Symptoms started in 1987 and have waxed and waned until 2005, since then it's been non-stop. I'm a normal flow stomach pooler, I get very bloated with any food or activity. When I'm pooling I get cold hands and feet ( never turns blue ) and I have postural hypertension.

I get that also, been to the ER many, many times. Make sure you get it checked out with a cardiologist, then at least you relax a little. Anymore I don't panic at all, I treat it like any other pain. I'd love to find out why this happens also.

Put me in the group that hasn't had a cold, it's been 4 years since I've had one. It's like my immune system is on overdrive, my wife and kids all have been sick around me and I've caught nothing.

Just a thought EM, when your body fat % was reading high could you have pooling and the scale saw this as fat. Then when you felt better you weren't pooling and this blood volume was back in circulation and the scale didn't measure this as body fat. I love a good mystery, anyone else with some ideas?

I'm a stomach pooler and my belly will distend over 6" bigger during the day then I am in the morning. When I eat or am active it gets even worse, hard to miss this lovely symptom.......lol

I don't know anyone else with dysautonomia, I had started a post on here looking for anyone in the area........no one came back. Could be why doctors ask what dysautonomia is when I fill out a question sheet for their office. That's why this forum is so important for most of us, it's our only exposer to others with this.

Hi Water, My symptoms are exactly like yours, it was a long 4 years before I could get any doctors to give me a TTT. Then after reading some posts on here about mito I talked my PCP into sending me to a geneicist ( had to wait 3 months ) but my appointment was two weeks ago and this doctors wants to send me to Atlanta to see Dr Shoffner and his mito clinic for further testing. Some doctors do think dysautonomia is a mito disorder, others feel it's a symptom of a mito problem, still others feel there's no connection. For a group of us it's worth getting a muscle biopsy to rule it out. Good luck with your search, keep us updated on your progress.

Hey Nauthiz, I have tingling in my lips, teeth and around my mouth. My nuero got me on alegra-d for sinus problems and upped my magnesium to 800 MG twice a day and it seems to help. My back also hurts after eating or standing for very long, along with bad stomach bloating. I'm a normal flow pots person and get bloated really bad after meals or activity, my thought on this is the increased blood flow to my stomach is hitting a nerve and causing the bad pain. I wish you luck finding something that helps, keep us updated on how you're feeling.

Great point Fire, I was going to ask you Ram how bloated was your stomach? I can tell you I have the same BP & HR things going on after I eat and I'm very bloated.

I have to agree with April that there is an "in between area", now enough activity may be just getting up from my desk at lunch time and getting outside. There is no way I could keep a job where I had to be on my feet for even a few hours a day. So it can be a very fine line to getting enough activity, and I have learned to take things easy on weekends or time away from work. Trying to do too much work around the house has been a major source of many of my crashes. One thing I have noticed with alot of us here, many of us were very active in sports or exercise before becoming sick. It's not unusal at all for active people to feel worse when they can't workout.