jangle

Christy, what are your son's levels at now?

I read a case study where a person was able to achieve remission from POTS with a vitamin D level of ~40. It was posted on the thread, "Has anyone tried calcitriol"

This may be an old thread, but yes I also had shingles when I was roughly 10-12 years old.

I'm on an endorphin trip right now after going for about 20 minutes.

Be glad you can't see my retarded dancing to music.

Your right jangle - if someone gave me a way of getting saline in easily tomorrow and I could have it daily You would probably never see me on these forums again and I couldnt care less if pots was caused by aliens abducting me and rearranging my blood vessels

Arm chair speculation makes me feel like i know whats going on but in reality I cant test any of my ideas so its probably a waste of time

POTS IS SO CONFUSING!

But you know what, I don't even care cuz my (well not mine but the one from the case study I read) vitamin D theory is going to work out and we're all going to get better! okay!!!!

Before I got POTS I went through training for law and security......used to run two miles everyday...plus a 2hr weight training workout which included 200 crunches everynight......I also unloaded furniture trucks at Pier 1 at a part time job....I was really active.....a total exercise nut.......thats why I dont understand these doctors that say we are sick due to deconditioning?? I really dont get that? Most of us were in great shape before and during this illness until we crashed and couldnt function at all. Whats up with that? I almost wonder if it isnt that we stressed our bodies too much with being so active???

Bren

Bren, interesting you should mention that, according to this study: http://hyper.ahajour...pe=HWFIG#ref-13

(In its references 11-12 I think) it cites that excessive exercise might actually induce OI intolerance. But in my case, I mean, I was clearly having symptoms before I began exercising, at like 14 or so. It really gradually came on, with a strong presentation my freshman year, a remission my sophomore year, and the really bad presentation my junior year.

Either way, given that many people (marathon runners, football players, soccer players, etc etc) train at very high levels and don't seem to have significant presentations of OI, I'm tending to think that it's not caused by excessive exercise.

I know, I am skeptical of Levine too. It doesn't make sense as far as onset. As in active people get this while they are active..if activity helps there is something missing here with onset.

Lemons there was another study here you might find interesting:

http://hyper.ahajournals.org/content/45/3/391.full?maxtoshow=&hits=10&RESULTFORMAT=&fulltext=stroke&searchid=1&FIRSTINDEX=60&resourcetype=HWFIG

The recent talk about exercise, and the success TXPOTS had with it has gotten me even more motivated. It's time to get serious with exercise instead of sitting idly by and doing nothing. I encourage other people to join with me. Let's finish this thing!

Read this study http://hyper.ahajour...ourcetype=HWFIG

I'm starting off on the recumbant bike, I was already doing 3 miles of jogging, but then I realized my heart rate was 200+ bpm and I don't think that's safe. I'm trying to keep my HR between 160-170, and right now I can only do that on the bike.

Of course in the study I just referenced, they started off jogging 30 minutes straight and progressed to 50 minutes straight, I think that's what we're going to have to aim for.

(maybe it is safe to jog?)

Believe it or not, when I was first hit with POTS I was playing high school football in Texas. Which is fundamentally different than playing high school football in other states. In Texas, the coaches are actively trying to kill you.

Although as expected, I didn't last long after my POTS became really bad, I quit my junior year in high school, during the off season. I have no idea how I made it through the season, but I was very athletic at the time. I could easily run for miles, I could lift about 3/2 my body weight on the bench press. I was squat pressing over 300 pounds (I weighed like 150 pounds at the time), and I could do all the other lifts with way above average strength.

Besides if it were just hyperventilation, things like Saline wouldn't do anything for us.

Thanks Julie for the explanation on the valsalva manuever, that definitely was a difficult thing for me to do!

That's great to hear! I'm a little bit afraid of exercising as I notice my HR gets to be about 200+ when I'm jogging. (Not sure if that's safe.)

I think many people on this forum would be willing to put up with the pain if they knew it was going to help them. I did do a jogging regiment of 5 weeks duration and unfortunately I didn't feel much better, but perhaps it takes much longer than that I'm not sure.

Maybe hyperventilation is apart of it, however it would not explain how when we go to sleep and wake up - we still feel dizzy. I.E. during our sleep, we generally breathe normally, and upon waking up we wouldn't have low carbon dioxide, yet we are still dizzy.

When I had to do the valsalva test during my TTT exam, I felt really lightheaded breathing deeply. I felt the same level of lightheadedness when they tilted me up. Maybe there is some shared mechanism but I don't think hyperventilation causes POTS.

You'll have to ask your doctor what it means. I looked up svt and the strict definition is a tachycardia that does not originate from the ventricles. So it could mean sinus tachycardia which is what pots is. However most doctors use it as meaning something other than sinal tachycardia, so you'll have to see. Also since its not in the ventricles you'll be alright whatever it is.

I hate to say anything, because I feel like it might in some way curse the future results to being erroneous. However, as I read over the explanation they gave, it all seems very plausible and most excitingly, it seems to touch some of the fundamental ideas associated with POTS. Things like the NET dysfunction, the alpha/beta receptor dysfunction, and the elevated norepinephrine.

But what worries me is why hasn't this received more attention? Is it that POTS researchers are completely unaware of this case study? I mean there isn't a lot of people researching POTS, perhaps only a handful. Still I would think something like this would be known to them, especially after 2 and a half years. It concerns me that maybe there's something flawed about the whole idea.

But then, the better half of me really does think that they never actually did notice this report, and that no studies have been conducted on the manner, it represents a potentially new and exciting method of treating POTS!

Oh honestly I have no idea. They might be the same thing. If you can look up the compound in the merck manual and see if it is the same chemical structure as calcitriol. It should have three "OH" chemical groups on it.

Jangle,

I had kind of read a similar study back in November, and polled people on their levels. You can look at the poll and read the link to the study here:

http://forums.dinet....__fromsearch__1

When I read what the patient in your link above had, it was like a check-list for me: reactive hypoglycemia, NCAH, osteopenia, and fibromyalgia. I'm actually not sure I have the NCAH, but possible, as I do have a growth on each adrenal. I am supposed to be intensively getting my vit. D levels up, but I take it for a few doses and then skip a few weeks to let my intestines settle down. It kind of makes me constipated. I will take my next dose TODAY!

I think you have to take calcitriol, not all vitamin D is the same, calcitriol is the final "version" of vitamin D after your body has processed it. In this patient, she had normal pre-vitamin D levels, but abnormal "after processing" vitamin D levels. That's why I don't think vitamin D supplements and calcitriol are the same thing. Regardless, it seems like the people in your survey weren't able to get their levels much past 30. It seems like you need it at 40 to be well off.

I'll also see if I can get my vitamin D levels checked. Make sure they're testing the 1, 25( OH)2 vitamin D3 levels because the other one will probably be normal.

Thanks for the concern, yes my dr said to just stop the Florinef abrubtly. My pulse seems a little bit lower than usual, but it's nothing too extreme. My blood pressure is normal.

Again thanks for everyone's concern.

Somehow I have a feeling this is going to help a lot of POTS patients.

I'm not sure how long I'd keep it in me. Right now I'm going to the bathroom every 30 seconds. I got my compression stockings on, haven't passed out, and my BP and pulse seem ok.

My pulse is as it always is, and my lying down BP is 120/66. I guess it's just I feel full body weakness, I haven't passed out.

I got off of 2 weeks of Florinef, felt good for about 3 days after, now tonight I feel like I'm getting steam rolled. Am I in danger? I'm feeling much weaker then before, lying down doesn't seem to help, seems to make me want to pass out more.

Should I be going to the hospital?

Apparently there was a case study reported about someone who went into remission with calcitriol.

http://www.mindcull....pplementation/#

I can't read the whole abstract because of the annoying website, and I haven't been able to find this abstract anywhere else. I was wondering if anyone has tried calcitriol?

EDIT: if you sign up for the website you can read the whole abstract.

Apparently they found a woman whose HR increase was very dramatic. She had elevated NE and Epinephrine upon being tilted. They started her on calcitriol, she was in remission in about a month.

That sounds amazing, someone who cares! Can you ask this doctor to do a literature review? I think there might be some sources pertaining to POTS that isn't widely available on the internet and might be of some use to figuring something out. That's the one thing I wish doctors would do, research things they don't understand!

I get something similar, at night when I lay down I'll notice tears running out the sides of my eyes. It's not that I'm crying, in fact I'm usually near sleeping when I notice it.

Maybe something to do with mast cells?