jangle

My Vitamin D was low normal in the 30s. Both calcitriol as well as regular vitamin D

Crap I didn't even check my blood pressure.

According to my sleep doctor I don't have any sleep disorders. No sleep apnea and I go into deep sleep. I might be an exception to the rule though.

I don't know what's working but lately I've been doing

Vitamin C + Vitamin D + Vitamin B (multi B complex) + Fish Oil + Alpha Lipoic Acid + Vitamin E + Exercise

today my heart rate stayed around 100 when usually it averages around 115.

But I have no idea what's doing it for me.

The midodrine might not be crossing your blood brain barrier but it is having effects on your sympathetic nervous system which does innervate your brain and can modulate anxiety signal.

My cardologist developed POTS after his mother died. He is now recovered and is quite knowledgeable about autonomic dysfunction. It is possible that the stress of his practice plus the stress of his mother's death caused POTS. He told me he was quite sick and was thinking that he would have to close his practice. Florinef helped him. I suppose that is why he was very surprised when it didn't help me.

That's very interesting. Sometimes I wonder if this isn't some sort of strange psychosomatic illness. Like a physical manifestation of extreme mental stress or worry.

I don't think POTS is a psychosomatic illness. The consistency of the symptoms (everytime one stands up) regardless of their underlying emotional state i.e. relaxing in the home or stressed at work, roots this in a physical cause. However, I do believe that stress can exacerbate POTS, given that POTS is predominately caused by vagal withdrawal, further sympathetic excitation is only going to further cause symptoms.

But I think there is just way too many physical abnormalities with POTS (angiotensin ii, aldosterone, plasma volume) to be described by anxiety alone.

Ya I don't know what's going on with normal flow, the difference isn't likely to be statistically significant. But maybe renin is involved with normal flow.

Still I wonder if the majority of POTS patients are "low flow" because Raj's undifferentiated POTS type had the typical profile of Dr. Stewart's low flow. Unless of course Raj selectively looked only for low flow patients, but I don't think that is likely.

My friends have ditched me. I'm in homebound schooling full time now and they don't come over or even call. I'm so lonely but I'm kind of too preoccupied with POTS right now to try to have a social life. My friends are my dogs and my family and my cardiologist. That's kind of pathetic. And of course everybody on this website , but obviously its not the same. And it's kind of upsetting that I'm just gone with some rare illness and they don't seem to notice/ care. Is it just my friends or did this happen to everybody?

Now that I'm out of college I'm in the same situation. In a way I needed college to give my mind a break from POTS.

Friends are probably the most therapeutic thing you can have for yourself with this condition. If you are able, you should call them up because remember often times it's not that they don't want to hang out with you, it's just they get busy with their own lives that they don't think about hanging out. But I'm sure they'll be open to doing things with you, but you'll probably have to initiate it a lot. And there's nothing wrong with that.

I think you should try all you can to get out and socialize.

I have an interesting result from running the numbers from Dr. Stewart's study on POTS and Dr. Raj's study on POTS.

In Dr. Stewart's study, the ratio of angiotensin ii to aldosterone is as follows:

Low Flow POTS: 21.19

Normal Flow: 6.875

Control:7.8

High Flow: 5.16

In terms of percentages relative to control:

Low Flow = 271%

Normal Flow = 88%

High Flow = 66%

In Dr. Raj's study (General POTS patients, undifferentiated to type)

POTS: 9.34

Control: 2.8

In terms of percentages:

333%

So from these findings you can see that in Low Flow POTS, patients have 271-333% increase in their angiotensin ii:aldosterone ratio relative to controls. (I presume most of Raj's patients were low flow to have such a high angiotensin ii average level)

Whereas in normal flow and high flow, patients have a lower angiotensin ii:aldosterone level.

The relevant parameter might be to therapeutically target both ends of the ratio to bring it towards control's ratio level. In the instance of high flow, it would probably proceed by raising angiotensin ii levels. In low flow patients it would proceed by lowering angiotensin ii levels.

Pots girl, if you go to my history of pots thread I posted a review article on pots (then called by different names) that had a 20 year follow up on these patients and didn't have a remarkably different death rate. Pots is very scary, but understand there are people on this board who have had it for over 40 years. We'll find ways to ease the pain together but you shouldn't worry about dying from it.

I don't think the right approach is to reduce sympathetic activity rather I think the objective is to boost parasympathetic activity.

Exercise has been shown to do that. I'm currently studying other ways as well.

At one point in my life I was convinced I was going to be the greatest physicist of the 21 century. I did so much activities before I was sick and even after I got sick I still struggled through thousands of hour long presyncope events, graduated B.S. in physics with honors and am applying to medical school this summer.

I would definitely fit the type A personality. I will find a cure for this thing, so I, others, and future others will never suffer from this again.

I had the same problem when I was first struck with POTS. About 0-10 minutes after eating I would vomit. This lasted for about 3 years until it went away for whatever reason.

I don't think it has anything to do with allergies as in my case I would vomit to anything, even if I drank enough. I wish I could tell you what was going on, I assume it's some sort of autonomic nerve dysfunction that won't let you keep the food down.

Try eating fruits, they're a little easier to hold down. Also keep the portions small. Hopefully this will pass for you soon.

That is really odd, could it be the high levels of stress associated with these jobs or the long periods of standing? Maybe there is a inclination to a certain viral infection that precipitates POTS? But then wouldn't the patients also be getting POTS?

I think it's either excessive stress and/or long periods of standing.

Good luck with the accommodations and exam!

Thank you annaliese, I'm going to wait for Issie's report as well as I want to talk to my doctor about it as I'm not knowledgable about dihydrolipoic acid. I'm sure my doctor isn't either but I have to at least try.

There have been cognitive impairments documented with people who have routine desaturations below 85%, now how long is significant, how often etc. I don't know, but it has also been shown that people who get on CPAP make a statistically significant recovery of their cognitive functions after a period of about 2-3 months.

As for low blood pressure I have no idea. My grandmother routinely runs at like 95/60 and her cognitive abilities are excellent.

Nope, fell back to the wonderful world of POTS.

Oh well, it was nice while it lasted.

I had low o2 on my overnight o2 monitor, dips into the low 80's they want a proper sleep study but hard without insurance, they said it's not OSA though.

Odd my doc was really worried and others here say they were told it was ok?!?

Shoegal, i think you might need a CPAP. 80% oxygen saturation doens't sound good.

I don't know how long this will last but tonight I feel a strong remission. My HR still goes from about 70 to 99 when I stand tonight, but I feel A LOT less lightheaded. I jogged today and I think that's what does it, I feel much better after the initial awful feeling from jogging. Also I started taking alpha lipoic acid + vitamin C + vitamin B (multiple B complex)

Oh if only this would last.

I had to do deep breathing on a timed counter while they had electrodes counting my heart rate variability and other parameters. I don't know exactly what went on but my health record said it was abnormal.

Trach, those are your reflexes, which can be ok. My vagus nerve reflexes were ok, however, my cardiac response to deep breathing was nearly flat, indicating my vagus nerve is dysfunctional. So while my reflexes are ok, my overall functioning is not good.

Also, Issie, I wonder if your very low levels of aldosterone might have had something to do with your bad experience with losartan. Maybe the further decrease "crossed the line" sort of speak and made you have just way too low of levels. Perhaps such a thing would only work if one's aldosterone is normal or near normal levels.

As Rama said mostly everything said on angiotensin ii is conjecture on these boards.

However, angiotensin ii anomalies have been studied to impact your vagus nerve's ability to communicate its nerve signals. Additionally it has been shown to be elevated in other excitosympathetic conditions such as hypertension and chronic heart failure. It has been shown to reduce water + salt absorption in the large intestines which might explain why saline (which bypasses the intestines) works for us, but drinking does not. Additionally disturbances in angiotensin ii has been observed in patients with mitral valve prolapse who also frequently suffer from dysautonomia like symptoms as well as astronauts whose angiotensin ii concentrations are elevated from space flight. (Although the astronauts thing is in general no explicit study has been done on astronauts with POTS and their angiotensin ii levels directly.)

Additionally, Dr. Stewart and Dr. Raj separately showed that patients with POTS have elevated angiotensin ii levels. How many and what percentage and what distribution is unknown (it might be possible to have normal serum angiotensin ii, but abnormal concentrations elsewhere in the body - say specific to one organ.)

Additionally Dr. Stewart showed that administering an angiotensin ii blocker to patients with POTS seemed to normalize their blood parameters relative to a control group.

Exercise has also been shown to reduce angiotensin ii levels, and it is well known that exercise assists roughly half of POTS patients. Additionally, in the animal studies only half of the mice seemed to have this reduction in angiotensin ii levels. Again, the exact relationship wasn't studied.

i.e. The relationship between people who exercise, people who exercise and have reduced angiotensin ii because of it, and people who exercise and have reduced angiotensin ii because of it and their POTS symptoms.

So in a way it's all stacking up, but sorely needing some EXPLICIT studies.

The thing is, you need to get rid of the 5 membered ring in the alpha lipoic acid. It might still have some effects on angiotensin ii binding, but it will be minimal. It's the free sulfur groups that inhibit the angiotensin ii binding. However, I also read that perhaps lipoic acid is reduced inside cells, but I don't know if that means it can bind to the cell membrane. I mean if it gets reduced inside the cell, it's now become more polar and is unlikely to go through the nonpolar cell membrane to bind to surface receptors where it is needed.

Either way, one should be able to obtain dihydrolipoic acid, it's just a little bit more difficult.

Lemons you could try wearing a hand splint before you go to bed. It will protect your median nerve from the natural curling of the hand during sleep.