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If there really are only 500,000 people in the U.S. with POTS then that would put this illness at somewhere around 1 in 600 which interestingly enough is 1/6 the risk of developing schizophrenia in your lifetime. Sad that she can run these marathons but that it isn't taking her POTS away. Hopefully she will eventually improve.

Oh sorry kayjay I cleared some up.

Question: If POTS is simply the result of deconditioning, then why isn't like 30% of the American population suffering from POTS?

Thanks Issie and Corina. Emma yes, I'm up to 6 miles 4 times a week. I think what's left of my POTS is eye-ear imbalance. It's not really lightheaded it's more of just an "off balance" feeling. I'm trying to walk with my eyes closed and my eyes moving to try to get my brain to recalibrate its balance to using my feet + ears rather than my eyes for balance.

Ya my blood pressure is around 110/65 on Losartan 25 mg. Today I've been pretty much 95% improved throughout the majority of it. Whatever is left of my POTS is a barely noticeable sensation in my head.

I honestly don't care about the Grinch syndrome name and I think the predominant reason people do take offense to it is just in the setting of the overall neglect we suffer as POTS patients. That is to say if we felt doctors realized how disabling POTS was we probably wouldn't mind as much. We're just sort of in a state of hypersensitivity because let's face it the majority of us are on our own as to the diagnosis/treatment of our illnesses. I have no idea how to change physicians, I try to get it into the medical student's heads when they see me because they're more likely to understand.

Raynaud's about two years prior. Frequent sighing respirations even when I wasn't bored. My balance seemed worse with my eyes closed. Started getting frequent tension headaches. Also I guess the most obvious sign was that whenever I stood up I would get lightheaded for a few seconds (only back then the lightheadedness would go away).

JRC, unfortunately both we and doctors don't know what causes POTS. There is some speculation about an autoimmune etiology and it would make sense since for a lot of us our symptoms are worse during the daytime, the syndrome seems to strike those after stress, infection, or pregnancy and it seems to follow a wax/wane course. All typical features of an autoimmune disease. However I don't know if it's actual damage to the autonomic nerves. It very well could be, or it could be a deficiency of neurotransmitters/hormones that the autonomic nerves need to function. Right now it is really unknown how exactly the dysfunction develops. You're right in that this is a strange illness. A very strange one. I don't think I'll ever forget my experience with POTS for the rest of my life. Hopefully your experience with it will be a short one.

Last night I got gastroenteritis, and just feeling the nausea made me realize just how incapacitating that pain is. When I had gastro issues with my POTS I wasn't ever really nauseated I just threw up a lot. But I can't imagine having to deal with chronic nausea, last night just made me want to bang my head with a frying pan.

1.) I wouldn't say everyday but I exercise pretty much 4-5 times a week for anywhere from 20 minutes - 50 minutes each time. 2.) I mostly jogged so arm movement wasn't significant compared to leg movement. 3.) I tried to exercise below 200 bpm, but starting off I broke that routinely, I would be somewhere between 200-210 bpm. I never felt bad the next day, in fact generally I felt better immediately after exercise and felt worse the longer I would go without exercising. 4.) I always did exercise in an up position. 5.) I suppose I should try lifitng weights with my arms, but I've mostly been jogging. 6.) I've definitely built up my leg muscles and thigh muscles from jogging and I feel that has helped me get the blood flow back to my heart, thus reducing my symptoms. 7.) I've been lucky enough to not have crashes, I always feel about the same or better before I start exercising.

That seems like a question best left to 100 rats in a lab.

Jon, multiple system atrophy has been diagnosed in someone as young as 30 years old, but I haven't seen a report of an age younger than that. Typically that is a disorder that is diagnosed in the mid 60's to 70's of a person's life. You being a college athlete and 24 you would be the youngest patient ever diagnosed with MSA. Also MSA starts with one set of symptoms i.e. motor symptoms or autonomic symptoms that last for a few years before developing into the other symptoms. Not all at once. As for the virus, unfortunately some people do seem to be predisposed to developing POTS after a viral attack. The good news is that it is possible to rehabilitate yourself, I myself have suffered from POTS for about 6 years and now I consider myself recovered. I'll send you a link to my blog that I just started but essentially what you're going to need to do is something that should be familar to you already - and that is aerobic exercise. It seems silly, but actually I myself fell ill with POTS when I was playing football too and I was in great shape. Despite this, it has been a combination of aerobic exercise + Losartan that has helped me recover. Wish you well

Naomi I too tried not to use profanity, but this ideology really makes me mad. I mean I'm glad if they have a program that alleviates the symptoms, not a program that teaches them to do the stiff upper lip, because I don't need to tell you POTS will win that fight. It just seems like they're treating them like kids with emotional issues who invent their symptoms in their minds.

Well shoot, I don't really consider that overcoming POTS. For the past 6 years I didn't know I had POTS I basically just pushed through it and went through college. Treating POTS isn't as simple as trying to put a rug over it.

One other thing, Losartan seems to be improving my anxiety symptoms.

Losartan. Florinef gave me bad side effects.

Today I felt pretty much fully recovered from POTS for a few hours and now that it is noon time (my worst time) I'm feeling slightly bad again, but I'm around 80-90% improved still. The Losartan seems to reduce my symptoms a lot and keep them down even under conditions of stress. It's just I still am getting the day time variance.

Issie there are a lot of paradoxes with the RAAS in POTS patients, for instance the elevated angiotensin ii/low aldosterone paradox, so it's difficult to say exactly how a POTS patient will respond to Losartan, but it is expected that Losartan should decrease aldosterone by decreasing bioavailable angiotensin ii. Whether that actually happens is unknown.

Yes, I got a second wave during the afternoon. The amazing thing I've found is the Losartan seems to prevent stress related POTS. I don't get an escalation in symptoms anymore during times I ordinarily would have. Still preliminary though.

ENJOY WHAT YOU GET!! I can totally relate to your rollercoaster analogy, my goodness... for me it seems to be an hourly variance. Good some hours bad the others.

Unfortunately the Losartan has a short half life and my doctor wrote the script for once a day. I might have to ask him to split it up because now (about 8 hours after taking it) I'm feeling bad again.

This is my second day on 25 mg of Losartan and today I feel pretty much somewhere between 90-100% recovered from POTS. It's sort of preliminary and this could just be another (hourly) remission but I definitely feel better today than I have at any time before. I'm fairly sure it's the Losartan. Perhaps the Losartan + Exercise - they might be having a synergistic effect. Anyways just wanted to update.

POTLUCK, I just meant that my symptoms of presyncope get more severe under stressful conditions. A LOT more severe. Glad to hear your treatment for your other condition worked well, I don't know much about that condition. I just began the Losartan, I'm starting at a low dose 25 mg/day but I think I want to start small to let my body adjust.

Potluck, I have two different states of symptoms. The unstressed continuous state and the elevated anxiety/over stimulated/ stressed state which simulates presyncope severely. Running has helped the unstressed symptoms as well as mitigate the stressed symptoms but thusfar it hasn't had as significant effects on the stressed symptoms. http://www.ncbi.nlm.nih.gov/m/pubmed/10783146/ This article explains how I believe elevated angiotensin ii is creating a hyperexcitable/anxious state by increasing the activity of neurons in the region of the brain responsible for anxiety. I begin the losartan tomorrow.

Potluck I myself am going to be starting losartan soon. Keep in mind there is an inverse correlation between angiotensin ii and NO bioavailability. To say there is reduced nos is also to say there is a regional angiotensin ii elevated concentration.