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So I tested positive for Small Fiber Neuropathy via both QSART and Skin Biopsy now. One more clue to the puzzle... onwards and upwards.

Keep up te fight. You're a great mom. Your son is blessed to have you. Thank goodness there has at least been some minor improvement.

Thanks guys.

It's an awful catch 22 to be in. I think the most practical thing we can all take away from this controversy is that if you can exercise, you should force yourself to do so. If you can't, you should rest assured that even highly conditioned athletes have come down with POTS - it's not your fault and since there is a non-deconditioning mechanism behind it, there is hope that you can find and treat your underlying cause - or that medical science will soon be able to.

Quest faxed over their handling procedures for the blood test to my doctor and he was unsatisfied with it. So we're just going to draw the blood at his office and he's going to send it to Mayo directly.

Yeah I have this occasionally and it too seems to be what wakes me up some days.

Yeah through Quest it's still done via Mayo. Apparently they have two different tests through Mayo that include it, so Quest is talking to my doctor about it. Nothing is simple with this disease.

I have a script from my doc to finally get this antibody test and I need te quest test code (goin to take it to quest laboratories). Does anyone know a good way to look that up? I have tried googling and the quest website.

Thanks for the articles, Alex. My experience so far has been that my max heart rate during my 35 minute recumbent biking has increased about 20 bpm off of beta blockers (140 bpm to 160 bpm). Seems pretty inline with the articles. Dr. Fu's response didn't really answer the question - probably because the literature doesn't really have an explanation. He just said that beta blockers lower maximum heart rate and possibly exercise capacity.

That is the question, isn't it? Well the real one is to extreme salt or not to extreme salt for us. Which is a very different question than the recent news about this touches upon...

Hi everyone, I emailed Dr. Fu (Yes controversial Levine protocol co-author) about this tonight as well. Basically, I am wondering whether the blunted heart rate during peak exercise on a beta blocker makes the exercise somehow less effective than exercise done off it. In other words would following the Levine protocol while on a beta blocker be less effective than following it off one? In the original study he only accepted volunteers who were not on a beta blocker, but the big cross country study does accept patients on beta blockers. Anyone have some insights? Perhaps there are non-POTS resources about the effectiveness of exercise on beta blockers versus off (I tried Googling)?

Yeah you have to take chances sometimes... My doctor said clonidine is pretty benign as far as risk profile goes, although it is not safe to stop suddenly, like florinef. He said most people dislike the side effects, but that it's not a "dangerous" drug in his opinion when used at relatively low doses.

I haven't started yet. My doctor warned me that in all of his patients on clonidine there is often discontinuance due to side effects, namely extreme fatigue. Perhaps side effects were affecting your son greatly during the day, but at night are helping him sleep and you're still getting the benefit of the blood volume expansion?

Pretty much yeah, but they don't always go away. But the clear trigger is the orthostatic change bringing them on. See this thread: http://forums.dinet.org/index.php?/topic/23615-orthostatic-headache-poll/?hl=%2Borthostatic+%2Bheadache It was completely orthostatic when it started, now it has become (and I suspect this is largely drug related) not only orthostatic. But the ones we're talking about here are the orthostatic ones. I'm sure POTS causes non-orthostatic headaches too though as well as is a potent migraine trigger.

I think it's important to distinguish between orthostatic headaches and migraines. As awful as POTS orthostatic headaches are, it is my understanding that they are not technically migraines. Although it must be awful to have migraines be triggered by POTS!! I feel for you, Chaos.

No problem, so sorry to hear you have that. Does your O2 actually go down on a pulse ox when this happens?

In this study, Clonidine increased blood volume 12% in patients post treatment: http://journal.publications.chestnet.org/article.aspx?articleid=1054942

What do you mean by breath hunger? I definitely feel a little short of breath when I first stand up and my heart rate goes crazy, but who wouldn't with a 130s heart rate? It gets better as I continue to walk and my heart rate goes down. Do you continue to be out of breath throughout standing?

Yes, a million times yes, to the face/head pressure. No to everything else. My POTS symptoms started about 9-10 months ago to the best of my knowledge.

Hey everyone, I previously made this poll: http://forums.dinet.org/index.php?/topic/23615-orthostatic-headache-poll/?hl=%2Borthostatic+%2Bheadache It seems an astounding 76% of respondents had orthostatic headaches (probably a selection bias though!). You would think it would be a symptom more prominently featured in journal articles about POTS. This new poll is a follow up to the first. It's about treatment and specifically what POTS related treatment has helped, and what has not. Also let's talk about what other non-POTS drugs have worked in this thread (other than the obvious... pain killers right). What non-pharmaceutical approaches help too? I think chewing gum was mentioned in the other poll.

I held probably around 30 seconds (counted myself) and at the very end my heart rate fell from low 70s to 64, but my blood oxygen remained 98 throughout.

I'm just curious how alone I am in having an almost instantaneous rise in heart rate upon standing (within 30 seconds I go from 70-90 to 140), so I created this poll. If you have a similarly instantaneous rise, please tell me more about what you have learned about your POTS type/causes through testing below.

I was just reading your first link, Alex since I will be starting clonodine soon. http://journal.publications.chestnet.org/article.aspx?articleid=1054942 It was very interesting, and I'm wondering if anyone can help me out with a few thoughts I had: - Did I read correctly that Clonidine increased plasma blood volume by 12%? Isn't 12% the same number that another study found POTS patients have a deficiency of on average? - Looking at the graphs, it seemed the post-clonodine administration standing heart rates were actually higher on average, although less variable. The supine heart rates went down. So the gap between the two actually seemed to become more-POTsy post administration. - The whole article is based around MVP causing Dysautonomia. Is that something that used to be a common conception? While these are great articles, I'm wondering if there are any real controlled studies for Clonidine in POTS specifically. I couldn't find any on Google Scholar.

lindauerin - My personal, non medical opinion, is that something was off with the BP monitor. If you felt fine then that is almost certainly a very very off reading. If your BP was actually 40/20 you would not of been able to move I think. But talk to your doctor about it!

I think the diet side of her theory makes a ton of sense. We already know that untreated diabetes is a precursor for nerve damage leading to small fiber neuropathy...