julieph85

Carbohydrates give me a horrible catecholamines reaction, but only in the morning. It doesn't matter the quantity. I just can't eat anything with carbs period until 1:00. After that I'm fine. It is crazy

Rama, thank you, that is comforting! Gosh I hope they get an answer for us soon. I can't imagine spending the rest of my life feeling like i'm having a horiffic hangover day in and day out.

Issie, include me in that group!

Sue, that's really interesting. I just started taking extra vitamin D. Maybe that's drying me out extra. Thanks!

Lemons, I've been taking plaquenil but that's it. It's a drug for my RA. It usually doesn't cause this though cause I've been taking it on and off for years and never had that symptom. Also, it happened in november and I wasn't on the plaquenil yet. Who knows

I'm also prone and would get them several times a year as a child. I also had to have surgery on one and have not had another since. What helps is cutting them straight across if you even cut down the side a little you'll get one if your prone. I don't think it's related to pots

I've had this strange thing happen twice. It's been going on for a week and I also had it for a week in November. I'm generally always thirsty since having pots and I pee frequently. However, twice now I've had these weeks where the thirst is extreme, but I'm also extremely dry. I'm so dry all over, my skin is rough and dry, my eyes are dry, bloodshot, and burning, and my mouth and lips are dry. Basically every mucus membrane is dried out and I'm more thirsty then ever in my life yet no amount of fluids will satiate it. Also, I'm peeing every thing I drink out and my pee is clear. I have tried increasing salt and it doesn't help. I've been tested for DI so I know it's not that. I'm also negative for Sjogrens. What could possibly be drying me out so bad. It is awful. When this happened in November it just suddenly stopped after about 4 days. I'm going to the doc this afternoon what should they test for?

Sue, I agree and was thinking the same thing myself.

Gosh Jenn Im so sorry your having such a horrible time with this illness. I see a lot of your posts on here and I'm really inspired by your ability to be positive despite how debilitated you are. I pray you will find a cause and a cure! Are you able to sit up without syncope? If so maybe have hubby hold you on the bike while you pedal and see how long you can go? I imagine you will be less likely to syncope on the bike then standing because pushing the pedals will be helping to push blood up to your heart. I definitely think you are moving in the right direction with starting exercise because I don't think we'd ever get better laying in bed 24 hours a day. Good luck to you and let us know how it goes!

You go girl! That's wonderful

Sue I have the same experience. It's like I'm burning up in my core- my chest and upper back will be hot and flushed, but everywhere else I'm freezing and my temp will be low. It's the weirdest thing

Lol, so true

Thanks for advocating on behalf of all of us issie, I try to do the same

Issie, do you ever talk to dr goodman about your theories? I know he is of the mind set that pots is autoimmune endocrine. It sounds like you have a lot of knowledge and he does do research.... Just a thought!

And of coarse I also have the auto immune connective tissue disorder as well.

Hi issie, you mention pre-eclampsia. I actually developed pre-eclampsia about two weeks after I developed pots at the end of my pregnancy. Do you think they are related?

You actually got a dr to respond to you via email??? Well done!

I agree with mom, mine started during pregnancy. Which leads me to believe ours is autoimmune This is the case for many, maybe a majority. But in my case I became very sick w POTS DURING pregnancy, and was undiagnosed (although very mildly symptomatic on occasion) prior to pregnancy. I continued to be sick for the first several months postpartum, w POTS. Then I greatly recovered.

My temp is always low all morning long and this is when I feel terrible. Mid afternoon my temp warms up and my pots improves as well. I def think it is related to the pots

Sue, I would have to respectfully disagree on that I live in Maryland and have had zero help with my POTS. I live 10 minutes from Hopkins and was told there is no doctor there that can help me. They do absolutely nothing with dysautonomia. NIH does some research but that's it, no real patient care. There is one doctor here that knows about POTS and my experience with him has been very very bad. The care for pots here is so nonexistent that I spent $2,000 a few weeks ago traveling to Scottsdale to go to Mayo in AZ. I had such a good experience there my husband and I are moving there this fall so I can be near the clinic. Don't get me started on the other problems with Maryland..... I get why it would look appealing to an outsider but coming from someone living here, I'd have to disagree

I went one time when I first got pots and I will never go back unless I'm dieing. Only thing they did was hook me up to an EKG cause I was tachy. They told me straight out I was clearly dysautonomia and there was nothing they could do unless I was having a heart attack or blood clot. One time I also went to patient first for severe thirst and high Bp. They literally told me the exact same thing. Lesson learned.

Jangle, I think your theory is perfect. In fact I think I am a living proof of it. I've had RA for 6 years and the docs at mayo say they feel certain my pots is caused by it due to systemic inflammation at a cellular level. That is why they do I ivig to us autoimmune potsies, to put it in remission and get rid of those antibodies. I have always believed my pots is related to angiotensin 2 because I often feel horrible after a night of even moderate drinking and I don't mean a hangover I mean days of extreme thirst and high Bp. Through my own research I concluded that it was due to high ang 2 levels because even healthy people have a big rise in ang2 after consuming alcohol so you can imagine how high the rise is in us. Something else- it is theorized that us hyperandrenergic pots are experiencing hypersensitivity to catecholamines. Look up ang2 and catecholamines. Ang2 causes increased sensitivity to catecholamines and since it is elevated in pots, there you go. Also, many women with pots have worsening of symptoms during the 2 weeks before their period. During this time our ang2 levels are elevated. Your theory makes total sense to me and fits my body and symptoms and autoimmune history perfectly. Something else to note- I experience remission of symptoms every spring and summer. I have often thought this is due to the fact that I tan daily during this time and spend large amounts of time being exposed to direct sunlight which of coarse dramatically raises vitamin d levels. In 2010 my pots was about 70% improved. During that time I was on a immunosuppressive drug called plaquenil for my RA. I don't think that was a coincidence. I've been back on it for 3 weeks and am already noticing improvement. Well done on your research and theory. I'm a believer. Now, how to get mayo or vandy to research???

Lieze- angiotensin is also elevated right before you get your period and a lot of us feel worse during that time.

Rama did you ever try a mixed alpha and beta blocker like labetolol

I know you can get your ace level checked with a simple blood test. I'm not sure if that is the same ace you are referring to. Look up ace and sarcoidosis