jangle

Well water 4 life!

I want to try dihydrolipoic acid. It's the reduced form of alpha lipoic acid. Rama mentioned someone was improved with alpha lipoic acid, however a study I read showed that alpha lipoic acid has minimal activity with angiotensin ii, but the reduced form -dihydrolipoic acid - seems to block angiotensin ii receptors as well as have significant antioxidant properties.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1277260/pdf/brheartj00094-0008.pdf This is a good article that I believe describes POTS all the way back to the civil war. A lot of the symptoms these soldiers were describing I had when I initially got POTS. Nausea, sharp chest pains, palpitations (fluttering sensations in my chest), decreased exercise tolerance, and of course fast heart beat upon exertion.

Issie I know you had a bad reaction to losartan. Also a mom described her son was greatly improved with losartan, I was wondering if there are any other experiences with losartan on this board?

It peaked at 200 at the end. 180-189 most of the time.

Yesterday I got up to 20 minutes of jogging for a total of 2 miles. 10 min/mile is pathetic but I was proud. It's been roughly 2 weeks now and today I was feeling better.

Ya my nose has always been runny, I would say "medium" amount.

I had a sleep study done where I only got 2 and a half hours of sleep, but my doctor told me I don't have any sleep disorders. I wore an oxygen saturation thing on my finger and it tends to go to 94% while I'm sleeping. That's perfectly normal as your body requires less oxygen while you're sleeping (normal peoples heart rates will actually go into the low 50s or high 40s while asleep). However, if it starts going below 90% while you're asleep you should probably get that checked out.

I'm like Rama, I prefer to be up and moving. My symptoms are worst when I'm in the same position for too long.

I was wondering if anyone else got what I was getting. Whenever I sat in classrooms I would get a much more intense presyncope that would last an hour or so. My body got really hot, lightheaded much worse etc. etc. This happened thousands of times and I was just wondering if people also get daily or near daily excarbations of their presyncope that last for hours?

It is possible increasing sodium concentration is effectively boosting the vagus nerve signals (by allowing more neurons to be stimulated) which in turn helps the dysautonomia.

Can doctors see your list of old doctors? I've been to many doctors in the process of getting this diagnosed and I don't want them thinking im a hypochondriac. Also I don't want them seeing my current doctors medical records because im sure he wrote I was a hypochondriac.

Estrogen most definitely is involved with POTS. It's realistically the only thing that explains why there are more female patients with POTS than male patients. I haven't researched into this enough I'd have to read up more on what's going on with estrogen/angiotensin ii and other relevant hormones that estrogen might influence.

Julie please ask about potential angiotensin ii treatments!

*Krrrk* Patient is asking for salt water, I'm going to need back up. *Krrrk*

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Jenglynn, there is nothing I can write that will comfort you on this topic. As I'm certain you are aware, instead I want to focus on telling you that research in brain damage repair has come a long way. It is still probably a few years away before it is widely available, but the early research is very promising and don't lose hope. There are clinics out there right now that offer stem cell therapy for brain damage, I don't know how much trust you can put into them, but if your symptoms get really bad it might be worth looking into as you might not be able to wait for domestic research to translate to the clinic.

Issie that is horrible. I'm glad you had a doctor to stick up for you and to do the tests that were needed. Imagine if you never had that doctor. I mean I can think out of all the hundreds of thousands of people who have this condition, there is probably many people who are living with POTS right now who don't know about it and have accepted the diagnosis of anxiety like I did. My heart feels most for those people, because they don't even know there's something wrong with them and they're just suffering and really have no sympathy because no doctor really knows they have POTS. I mean if I didn't look up my symptoms and really spend a lot of time searching, I would never have found POTS and diagnosed myself (well and also getting referred to TTT- but only after I told them about my HR increase). I'd still be thinking I was just having anxiety right now.

Wow, thanks Rama. This is very nice. Hope to add a few more to the list as time goes on.

Thanks Lemons. I hope you haven't had to encounter a doctor like this before.

Saw my doctor today to talk about possible causes of POTS. He basically went into attack mode and told me I'm making it all up in my head and that I'm a hypochondriac and I need to see a psychiatrist to get my head examined. I told him that POTS has had a profound impact on my life, and he told me that's what all hypochondriacs say, "Oh man I just want to be normal" "well what is normal?" I just wanted to tell him that normal is NOT having your heart rate go up to 130 beats per minute everytime you stand. You know, what he said was a slap in the face to all the researchers out there who treat POTS. Dr. Stewart, Grubb, and Levine would have a lot to tell my doctor in the way of this being a hypochondriac case. Heck, I guess even astronauts are just hypochondriacs. I didn't say any of that, I didn't even acknowledge his statements. But I got so ridiculously pissed off, I did all I could not to just unload on this doctor. And it's so sad. it.is.so.sad. that what can we do? You know? What can we do. They don't care, they don't read the medical records, they don't research the illness. They just fit it in a convenient box and ship it off to crazy land so they never have to think of it again. What the heck? You know I see commercials for IBM's Watson. Good grief, I wish Watson was my doctor, that robot's programming sounds so nice when it talks to you and sympathetic. I would love that robot for my doctor as opposed to my doctor I have now. Oh? POTS is all in my head? Ok. Go enjoy your $250,000 salary, I'll just go back to having my butt perpetually kicked. Sounds great. I'm going to figure this thing out myself, because I have to. Forget this.

Hey, as articulate as you are and in the age range that he accepts --you might could do allot of people a whole lot of good if you could go. You could advocate for all of us. Don't think defeat - until there is defeat. Issie Oh no Issie, I'm not thinking defeat. I do have a referral to Dr. Levine, who also is very intelligent.

Well I did find a website about it, but I don't know if it's safe. I'll talk with my doctor about it, see if he's heard of it and whether it's known to be safe or not.

http://jasn.asnjourn...8/2346.full.pdf According to this research, the reduced form of alpha-lipoic acid, which is known as dihydrolipoic acid, reduces the binding of angiotensin ii to cellular receptors. I was wondering if anyone knows where we might obtain dihydrolipoic acid.

Ya, but the thing is, is that it probably takes a few months to see him and he's over 1,500 miles away from where I live and I think I would have to get a specific referral to him and he's not currently doing any research studies on angiotensin ii. (At least not that I know of)