davecom

Well it's been a year since my diagnosis and while I've in some ways made a bit of progress, I still deal with symptoms every day. I'm doing exercise, water, diet, etc. All the lifestyle modifications you can do pretty much and I'm wondering if sitting posture plays a role. I walk every 2 hours for a total of 120 minutes each day, most of it rather dizzy and uncomfortable. But during those 2 hour intervals I usually sit on a low chair (couch type of thing). I'm wondering if I should start spending more of my day sitting "upright" as in on a fairly high chair like an office chair/kitchen chair. When I do that my heart rates are higher of course, as you'd expect; but like with incorporating walking every day - I wonder if being more upright would be helpful for increasing blood volume. Anyone have experience with this topic?

I'm sorry. Definitely call your regular POTS doctor and let them know. Try to stay calm and drink a lot of water/electrolytes.

I like the optimistic interpretation by the journalist "Doctors at OU Health Sciences Center say they may develop better treatment or hopefully, find a cure within the next year." Surely the researchers didn't actually give that time frame for a cure....

It's a great study. Tom Petty said the waiting is the hardest part, and that's how I feel about a study like this. How long until we have a blood test that we can all get for the antibodies? 1 year, 2 years? How long until this leads to widely applied treatments? 3 years, 5 years? The waiting is the hardest part.

Yeah it's a pretty typical POTS symptom - I agree with kitt about the cause being blood to the brain (or lack thereof) - my neurologist said the same thing. Beta blockers made it much much worse for me by lowering heart rate and reducing therefore blood flow to the brain while orthostatic. Neurologist took me off of them even though they successfully lowered heart rate for this reason. It's important to remember that the tachycardia in POTS is actually a compensatory mechanism for blood pulling and therefore lack of blood to the brain. In some ways it's a good thing - otherwise you could pass out (and you might anyway).

Most exciting research I've seen since I got sick... I hope it pans out.

Even if they consider it to be a panic attack, at least they can do an echo/ekg for your piece of mind. Perhaps consider talking to the doctor who diagnosed you?

Hi blobbydodger, There are a lot of people I see posting here and in other POTS forums who are concerned they might have POTS, and ultimately don't have the heart rate changes that are the hallmark of the syndrome. It sounds like you already have clearly seen that you do. It must be hard waiting for the appointment in April when you feel so bad. Perhaps you can try some of the non-medical interventions before then? - Increasing liquid intake to 2-3 liters/day - Increasing salt intake (assuming you don't have hypertension) - Trying out a low-carbohydrate diet - Starting a regular recumbent exercise program - Trying out compression stockings Good luck. I hope things improve.

Absolutely should try to find your underlying cause. More than 50% of POTS cases are caused by an underlying small fiber neuropathy (Mayo's numbers). Have you seen a neurologist? More importantly, have you had a skin biopsy or QSAR?

50% of patients with POTS have an underlying autonomic neuropathy: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3538485/ A skin biopsy and/or QSAR should be standard protocol and hopefully will be in the future. It's a solid way of documenting a case with hard lab results for insurance/disability/treatment/etc.

What a struggle you are going through. Truly the fight of your life. Reading through everything you wrote, I can see that you have a superb attitude. You're saying to these doctors "I'm willing to do whatever you want, just help me." And yet they still turn their backs. You're being super cooperative, you just want some answers. It does sound like your neurologist is a hack. I hope you can find some better care in Toledo. Keep fighting. I think the liquid food, like Ensure, is a very very good idea. Good luck. Sending positive thoughts your way.

I've seen the articles on antiotensin and POTS before. The question is - why is yours low. This analysis doesn't answer that. It could be a feedback loop. With that said, I hope fludrocortisone works for you. Good luck, and keep us posted.

http://www.dailymail.co.uk/health/article-2547543/Multiple-sclerosis-triggered-FOOD.html I predict similar discoveries of pathogens will eventually be made in dysautonomia/POTS. We know EBV can be a trigger; there must be other unknown pathogens too.

Congrats on the improvement and thanks for posting the tips. They sound good.

Thanks for bringing the good news. Keep it up. Congrats on normalcy... something many people never get a chance to truly appreciate.