green

targs66 - I appreciate your research, but it is possible that the beds both produce mostly UVA, and yet still give off more UVB than one would ordinarily receive from sunlight. I am now unsure whether the tanning bed is doing anything, or how seriously it increases my risk of cancer. I had thought that there was a correlation between sunburns and cancer, but it seems that the sunburn is not the mediator of cancer - that is, sunburns are not what causes cancer but total exposure to UVA and UVB causes cancer. Apparently, some kinds of UV are more carcinogenic than others, but only UVB causes vitamin D production.

Elfie - thanks for your warning about the importance of changing the lamps - Unfortunately, I already bought my membership and I have no idea how reputable the salon is. Actually, I regard the entire bussiness as inherrently suspect - it seems like the kind of bussiness you can start overnight, at least here in Missouri where no liscense is needed (not that I think you should be required to get a liscense.) You said "Here in CO I often go to the local hot springs to get sun without freezing during our long,cold winter." So you go swim in the hot springs? Or do you just hang out in their vicinity? Either way, that sounds really awesome and I wish we had something like that in Missouri. One of my life goals is to move to Colorado, and yet I was unaware of the significance of the hot springs.

Has anyone tried this? I decided to - I bought a 90-day membership to a tanning company. I am going to get 10 minute tans, three times a week. I had a 7 minute tan yesterday, and had a good day today. This may be a placebo effect. Allegedly, many types of skin produce 10,000 I.U. of vitamin D in 10 minutes of tanning. Vitamin D is supposedly good for you. People on this forum often post about their low vitamin D levels. I wonder if anyone has tried treating their low vitamin D by visiting a tanning salon, or tried tanning in the hopes that it would improve their overall well-being, and thereby alleviate some of the symptoms of the dysautonomia. My personal motivation for trying this is: I always seem to feel better when I spend many hours a day outside in the sun. I seem to be more alert and less tired. I want to know if this is because of sunlight contacting the skin or sunlight contacting the eyes. The eyes are blocked during tanning. Once I tried blue-light therapy and it didn't really help. It just seemed to make me nervous. So I have some reason to think that the benefit of sunlight is not due to sunlight contacting the eyes. But blue-light is not sunlight, so not convinced. I decided that the risk of skin cancer is small, since I will not be tanning for very long, and the marginal increased risk of skin cancer should be offset by a reduced risk for other kinds of cancer, since higher levels of vitamin D are thought to prevent cancer.

"6:00-7:30 PM Cocktail Reception Sponsored by Chelsea Therapeutics" !!!!!

I tried Diamox back in the day when I was desperately trying things haphazardly. It had no discernable effect, but I had ordered it from a pharmacy in India, so there is no telling whether it was really Diamox.

Rama, you and a number of other people make a really good point in response to my #1 - quality control can be addressed, in part, by working with a local manufacturer. As for doctor's never warning against herbal medicines - I guess I've always gotten the impresson they don't say anything, because 1) they know you're not going to listen, 2) they don't want to create the impression that the situation is either allopathic, or complementary - they'd lose patients. Especially when you consider that there isn't much allopathic medicine can do for POTS. But just because allopathic medicine can't offer much doesn't mean that you're better off with stuff that is untested and unregulated. when there are two choices A and B, and we know there are some risks for choice A, but we don't know the risks for choice B, then our minds naturally regard B as if it was risk-free.

About six months ago, I gave up on experimenting with different non-prescription treatments for POTS. One of the reasons why I stopped was because I had been buying medicines from an online pharmacy in India, and I heard some news about the high percentage of drugs made outside of the U.S. that are counterfeits. This led me to stop trying U.S. manufactured supplements and herbs, because they are unregulated and I figured that they are probably as low quality as foreign made drugs. So here are my bullet-point reasons for no longer pursuing herbs and supplements: 1.) Risk - Contamination could worsen the condition or create entirely new problems. 2.) Unknown etiology - without knowing the specifics of what form of POTS you have, its impossible to make informed decisions about which supplements to pursue. 3.) False negatives - its hard to know whether a supplement isn't working because its low-quality, or because the intervention is ineffective. 4.) False positives - The placebo effect is real, and we are a population that is extremely susceptible to it - since something as minor as increased heart rate can make us feel better, it is easy for our expectations to translate into false positives. 4.) Tracking improvement - Let's say a good supplement improves conditions by 5 - 15 %. Many people have more variance than that in their week-to-week lives, making it EXTREMELY hard to tell if you're feeling better. Especially since you have to wait 10- 15 days for the placebo effect to wear off before you can tell. I can't remember what I felt like 15 days ago. I don't even trust myself when I go back to old notes and see I have written "today was a 4/10." was it a 4 because I was physically doing badly, or was it a 4 because I went on a date the weekend before and got rejected and I'm still riding the downer? Was this month better than last month because my POTS is better, or because the days are getting longer and I'm getting more sun? Reasons for pursuing supplements: 1.) Psychologically - it is almost unbearable to do nothing and have no reason to hope for improvement. 2.) Placebo effect is a real phenomena and it really does make you feel better. Anything to add to this?

Rama, I seem to recall a post from you several years ago about how some herb made you feel great for a few days, but then you crashed. Was that horse chestnut or butcher's broom? I didn't find anything when I searched the archives.

The role of exercise is an incredible mystery for me.

Nothing seems to help me. I have weaned off the last of my medications except for the testosterone shots, which have nothing to do with my POTS (at least nothing I know of).

I have had some good results with very low doses of amantadine. I also take provigil - when not taking amantadine. But I don't like how it makes me feel.

I concur with those who say that POTS-related fasting intolerance is probably the result of a need for salt. I used to worry about having fasting hypoglycemia and was tested multiple times, but there was no evidence of fasting hypoglycemia. I've since noticed that eating small amounts of salty foods improves subjective well-being as much or more than eating larger amounts of low-sodium foods.

Has anyone ever seen any research that the body can adapt to orthostatic stress through mechanisms other than the heart? I'm wondering, because I got a part-time job recently that involves standing, walking briskly, and sometimes pushing or lifting heavy things, for six to eight hours at a time. By Heart BPM stays way below my threshold for breathing hard and getting winded, so I don't think it's much of a workout. However, I have been doing it for a month. I feel like maybe, my POTS is getting better as a result. It's hard to tell though, because I also stopped doing traditional exercise outside of light weight-lifting 2X a week, and its gotten a lot colder, so those things could be helping me.

I love swimming. I just started a few months ago, and I really love it. It's the only exercise where I can push myself to the point where my lung capacity is strained, without inducing post-exercise malaise.

>And why aren't Dr's more alarmed that previously healthy, intelligent (mostly young) people have such severe cognitive and perceptual deficits?? Sometimes it's so bad I feel like my brain is under attack. This baffled me too. Cognitive deficits were my first complaint when I was first misdiagnosed with anxiety over a decade ago. My best explanation is that cognitive deficit complaints are non-specific - they don't help the doctor diagnose what's wrong, so the doctor has trouble even acknowledging that they exist. I can forgive them - in order to diagnose a disease, they have to be able to shift out what's relevant from what's not, so they have to make fast decisions about what to ignore and what to pay attention to. My cognitive problems have gotten better with time, but I spent years of my life believing i had undiagnosed brain damage, and feeling very alone. I am angry whenever I think about how awful it is to have no one acknowledge it. At the same time, I believe that I was slow to shift away from fruitlessly seeking validation in favor of finding things that helped me feel better. I got too focused on cognition, and forgot that many problems with the mind are ultimately caused by problems with the body, improving bodily health is your best general bet for improving the mind.

I don't know, but the same thing happened to me at one point so, you're not alone. At the surface level, I can explain by analogy: if you take Tylenol for a fever and your fever goes down, you're still sick you've just suppressed a sign and symptom. If you secretly took Tylenol before you see the doctor, the doctor might say "you don't have an infection, you don't have a fever." These biomarkers - tilt test, HR variability, etc - perhaps they are mere byproducts of the pathology, not measures of the dysfunction itself?

I like to drink soy sauce. Bok Choy brand is gluten free.

Constipation and loose bowels bothered me for years. But I eliminated them by eliminating gluten and dairy.

What about licorice? I don't know if you can get enough as a food source to raise BP.

The journal Science has published two papers that cast doubt on the hypothesis that the XMRV retro-virus plays a role in CFS. One of those papers was published by Judy Mikovits of the Whittemore Peterson Institute for Neuro-Immune Disease, who has been mentioned on this forum before. "The Centers for Disease Control and Prevention, among other groups, published studies reporting they didn't find XMRV in chronic fatigue syndrome patients. Other papers found that substances used as part of the process to detect XMRV might be contaminated, raising the possibility that this may explain the positive findings in the 2009 Science paper." WSJ 6-1-2011 However, a similar study published in the PNAS linking CFS to a whole family of polyropic murine leukemia viruses (PMLV) has not been challenged. XMRV is one species found in the PMLV family. Harvey Altar published the study linking PMLV to CFS. WSJ - Given Doubt Cast on CFS-XMRV Link, What about Related Studies? It sounds like the XMRV hypothesis may have been overly specific. To make an analogy, if I were to say "smoking is the sole environmental cause of cancer" this would be wrong because many other toxins besides tobacco-smoke cause cancer. So, XMRV may cause CFS, but if it does, then only because all members of the PMLV family cause CFS, and XMRV is a member of the PMLV family.

I read that there is not a lot of evidence to suggest that singulair works. Here is my experience: I had lots of sinus congestion when I was an adolescence, but no diagnosed allergies. The allergist put me on singulair anyway. The sinuses got better. Years later I got kicked off my parents insurance and I thought "oh no! I cannot afford Singulair anymore!" But when I stopped taking it, nothing happened. My sinus troubles didn't come back! I no longer credit the singulair for helping.

Someone posted a few weeks ago an interview with a Dr. Ignarro, who says that you can significantly boost your nitric oxide levels by taking a combination of amino acids arginine and citrulline along with antioxidants vitamin E and vitamin C.

I would reserve anti-depressants as a last resort. The brain fog and sympathetic overactivation of POTS earned me a misdiagnosis of "anxiety" and a script for lexapro many years ago. The drug was insidious - it made me feel uninhibited and then when I tried to quit my POTS was much worse. I had a similar experience with a drug called EMSAM.

I tried it and didn't notice any benefits.