jangle

Lately I've noticed I feel more lightheaded after eating foods with cheeses. (Although still not sure if this is related only to the volume of food) aka superbowl weekend large pizza = sad Jangle. Anyways, I've had my IgG antibodies screened and they were negative. So it is unlikely (though still possible) that I have celiac disease. I'd rather not go through the hassles of a gluten free diet if it won't do anything for me, I was wondering if anyone has any success with a gluten free diet and if they have any knowledge about celiac disease causing POTS?

Do you notice any types of food that really sets off your symptoms? I'm trying to determine if I have food triggers, but then it's hard to tell if it's the type of food that bothers me or the volume of food.

Well surprisingly enough people who do weight lifting, especially leg presses can see transient blood pressure rises of up to 360/300 mm Hg. Now how they don't die from those stresses I have no idea. Typically you don't want to see a sustained change in blood pressure of more than 30 mm Hg, that might be a little bit dangerous, but transient changes of more than that are ok so long as they don't last long. Of course you want to keep your systolic pressure below 140 mm Hg

That is so awesome! You absolutely need an ally like that. That is definitely a doctor who cares and is willing to put in a lot of work for your care.

Atropine crosses the blood brain barrier so I would stay away from that.

I went to my doctor yesterday and he basically gave me the "I'm the scientist you're the lab rat." routine. I really don't want to start sounding cynical against doctors. So anyway I'm wondering if anyone else has found a way, I know some people mentioned labcorp but I'm still confused about how to use their method or where to go/what to do.

Well in most circumstances the 25 D3 level is an accurate representation of the vitamin D levels in the body. However, researchers up in the NY medical schools found a patient with a defect in 1-alphahydroxylase http://www.mindcull....upplementation/ 1-alpha hydroxylase is an enzyme in the kidney that converts 25 D3 vitamin D to 1,25 D3 Vitamin D (calcitriol). Calcitriol is what your body uses, the other vitamin D, the 25 D3 level is termed pre-vitamin D. EDIT: And now I'm waiting for my calcitriol levels to be reported.

Probably a computer error, if you were writing jibberish, you wouldn't be able to write these messages.

=====CHILDHOOD===== -As a child (6 yrs or so it started) I noticed I yawned a lot. Especially in stores or in other places with a lot of movement/stimuli. It wasn't the type of yawning from boredom either, it would be like 4-5 yawns every 2 minutes -I noticed I had abnormal resilience to cold temperatures, I didn't seem to be bothered by cold. -I always had profuse sweating in response to exercising. Despite not ever being fat, even mild exertion would leave me drenched. -I developed anxiety disorders early on as a child -I began noticing transient lightheadedness when I would stand up from a lying down position. Teenage years -I began noticing the lightheadedness more when standing up, also I felt like my heart was racing -I seemed to be insensitive to pain, I could tolerate large amounts of physical pain without being affected very much. -All the other symptoms from childhood continued -I began developing daily tension type headaches ~15 yrs old -Raynaud's phenomenon first noticed around ~15 yrs old but probably had most of my life ~17 years old I began having vasovagal attacks and chronic lightheadedness -Morning vomiting - Couldn't eat anything in the mornings due to vomiting. ======= Now here I am 23 years old. Wahoo!

I stand corrected, maybe there is a significant involvement of connective tissue autoimmunity with POTS patients. It would make sense that it is tied to some type of connective tissue dysfunction given that EDS patients have a higher propensity for developing POTS. POTS has got to be one of the most confusing things ever. The only consistent thing about the disorder is that it is inconsistent.

Oh my!! You don't have the fatigue? Count your lucky stars on that! Is it because your HR and BP are controlled? Neither are well controlled. My BP oscillates like crazy 90-120/60-80 and my HR goes up to 120 on standing.

I don't know the likelihood that POTS patients have ACE2 autoantibodies. Most of the people in the study with the antibody had a type of systemic sclerosis, and I don't know many POTS patients with pulmonary hypertension or ischemia digitalis. Raynauds phenomenon does occur, but that is fundamentally different from ischemia digitalis (In terms of severity). However, there might be a genetic or hormonal disturbance that has shifted our ACE2/Angiotensin2 levels in such a way as to disturb the autonomic nervous system. And we do get symptoms that closely approximate connective tissue disorders (Raynauds, difficulty swallowing, nausea/GI upset)

I think ACE2 can be inferred from angiotensin 2 levels though.

I know CFS has some carryover with POTS, however in my personal case I don't really suffer from fatigue during the day so I don't know how applicable this is to me. Still, I wonder if there's been any studies about antioxidants for CFS patients?

Just be sure not to get the ACE, that's not the one we want. We want ACE2. However, the angiotensin2 is definitely good. I want a company named Umbrella Corporation. "Oh..We'll test your levels"

I think I fall into the normal flow, my feet turn blue, but my hands typically stay white and cold.

My Vitamin D level was 35, but that's the 25 D3 Vitamin D level, I'm going back to get my 1,25 Vitamin D3 level tested as that was what was deficient in the case study I posted.

Just got done, 3 days in a row, ~30 minutes of exercise. Everyday I read these studies for motivation.

Make sure the levels reported are the 1,25 D3 vitamin D not 25 D3 vitamin D levels.

I'll talk to my doctor tomorrow about this. Be careful, there is a routine test for ACE which is used for heart disease patients, but that's not what we want. We want the ACE2/angiotensin2 test.

Woa, I really want to back up for a second here and make this statement. I absolutely do not advocate anyone using spironolactone based off of what I have said. I am just a random internet user, with no professional medical education. The guy with professional medical education and experience with POTS has said that spironolactone might have an adverse effect in patients. I really don't want anyone to take this on my behalf and have it hurt them. In my own personal case, I'd be willing to experiment with it simply because that is a personal decision made by me based on absolutely no safety research or plausibility of effects outside of abstract ACE2 levels. That being said, futurehope, how did spironolactone work for you? Also yes, spironolactone would very much decrease angiotensin2 levels. It increases the ACE2 enzyme by as much as 3 times. But please refer to the statement I made above about using Spironolactone for POTS. Lenna that is very interesting. I'll have to look into Losartan more.

I don't know the answer and I can't speak to the specific population of hyperpots. However, I do know that ACE2 is found inside neurons in the regions of the brain that coordinate and control autonomic activity. It is unlikely that angiotensin2 is the sole cause of POTS, because there are many other patient populations with higher levels of angiotensin2 that do not have autonomic dysfunction. However, that does not mean that angiotensin2 does not have a role, it may be a faulty compensatory mechanism, or serve as an aggravating factor of POTS. Blood pressure is controlled by many different physiological mechanisms. Perhaps in a supine position or sitting position, the other compensatory mechanisms are sufficient to control blood pressure. But upon standing up, the stress is sufficient to break through the compensatory mechanisms and cause the typical oscillating or elevated blood pressure exhibited in POTS. Alternatively your autonomic system could be partitioned. That is to say, that when you are sitting down, one part of your autonomic system controls your blood pressure and hemodynamics, and when you stand up, the brain registers the process of standing up and switches to another system or part of your body to control the hemodynamics there. In the process, if someone had a faulty mechanism on this side, it would produce the OI. Perhaps the elevated ACE2 concentrations are in the parts of the brain that originally are supposed to control hemodynamics in a standing position only.

ACE2 is an enzyme that converts angiotensin2 to angiotensin (1-7). If one lacks ACE2, then higher levels of angiotensin2 will build up. Angiotensin2 is found all over the body and it is a relatively new protein that has been identified. Recent studies have implicated Angiotensin2 in heart function, inflammation, and even autonomic function. Dr. Stewart was the first researcher to identify that POTS patients seemed to have higher levels of angiotensin2 in their bodies. Additionally, Dr. Raj at Vanderbilt replicated this finding. It is thought that some POTS patients have lower levels of ACE2 enzyme. In 2010 it was found that there are autoantibodies that attack ACE2 enzyme. It's not known currently if POTS patients have this autoantibody. There could also be genetic factors that explain why POTS patients have higher angiotensin2 levels. I spoke with Dr. Stewart about potentially using Spironolactone to treat this ACE2 deficiency, he said that it might have an adverse effect in some patients because spironolactone is a diuretic, but that it is a thought. Additionally, he said that other studies have shown that aerobic exercise has balanced the ACE2 levels in animal models. Vitamin D has also been inversely correlated with angiotensin2 levels. Low vitamin D levels seem to produce high angiotensin2 levels. Therefore, correcting a vitamin D deficiency might also be therapeutic.

Cfmartin, I can't comment on the hyperadrenic, NO, Mast Cell theories, but Dr. Stewart recently wrote an article online going over several proposed mechanisms of POTS/OI: http://emedicine.medscape.com/article/902155-overview As for the angiotensin ii theory, I'd be happy to answer any questions you have as best I can. I threw out everything I know on the last thread.

.