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green

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Everything posted by green

  1. I'm a guy. I have POTS. I don't talk about it with anyone anymore. When I went to see a specialist, I told my friends I was participating in a study because of a "childhood ailement that I grew out of years ago." No one asked any follow-up questions, because men are not supposed to have illnesses or complain about sickness. If they do, that's a bad sign that you should get away from them. Or... at least that's what I've learned from having POTS. So, I think that explains why you don't know of any men who have POTS. Where are these conferences full of ladies held? Sounds like something I'd be interested in.
  2. I worked full-time for awhile. But, I also lost multiple jobs because my symptoms made me a poor worker. Now, I'm full-time working on a Ph.D., but I have no doubt that I could teach full-time if I needed too. Owing to brain fog and mental fatigue, I'll never be able to grade fast enough to work a mere 40-hour work-week, but no one who can get work works just 40-hours a week in America anymore so I'll stay late and grade papers while my colleagues go to their second job, or go home to raise the kids or whatever.
  3. A friend (who does not have POTS) and I have been going to the gym and doing squats. Today, we were doing five sets of squats. He and I did the same weight, and mostly the same number of reps but he did 8 instead of 5 on his last two sets. He also did his really fast, and I did mine slower. Suddenly, the guy is complaining about a headache, feeling dizzy, and we had to quit for the day! I, however, am fine. Is that crazy? I'm the one with POTS! I can handle squating 135 lbs (about 80 % my body weight) about as well as someone who has never heard of the syndrome now. All I know, is that I did the Dr. Grubb protocol this summer, and then kept with it. Anyway, thought I'd post this to cheer on those of you who are fighting to make progress!
  4. I really like mestinon. The effect is subtle, but consistent. It helps me read longer for school, and helps me not 'crash' after exercise. The only side-effect I get is frequent bowel movements, except when I accidentally take two at once, then I have reduced motor function and muscle spasms. Don't overdose!
  5. I use testosterone, but I don't think its a glucocorticoid.
  6. Hello All, I have long been convinced that daily variations in air pressure explain variations in the severity of my dysautonomia symptoms. So, I started going to the web reports posted by my local weather station. Where I am (midwest) we are getting socked by a low presure front - predictably, I had a bad day today. So, I'm looking at the altimeter readings, and next to them, is a "sea level (mb)" column, which appears to be a translation into the air pressure equivalent for altitude. (I suspect this going to be really unclear so let me try to rephrase it): The weather station posts information to this effect: If you were at elevation _____, then the air pressure would ordinarily be at the same level it is now. Anyway, the issue here is that, we're getting socked with this low presure front, but the Sea level has only gone from 1017 to 1029 since yesterday. That's just 12 feet of different. Now, correct me if I'm wrong, but it seems like I could duplicate that effect just by going up a flight of stairs. Does this makes sense? I am saying that the air presure changes are either A) too small to be causing the variation in how I'm feeling by themselves, or else, just moving up or down a flight of stairs should cause air presure variations large enough to cause symptoms. I am interested in what others have to say about this. I am under the impression that other people, besides myself, have long believed that air pressure by itself can account for a large part of the variation in our symptoms. Now, I don't know what to think.
  7. >Good for you. Nice that you feel your energy levels coming up enough to start some exercise. I actually did the 3-month exercise study over the summer, which was more cardio oriented. Now, I am tryign to get in more weight-lifting without moving backwards on the cardio conditioning.
  8. Thanks Issie. I will look into ginger, milkthistle, and tumeric. Maybe something can make me liver livelier. :-) I don't know if high seritonin causes the insomnia of nuvigil. No doubt high seritonin would mess up my sleep - I once took wellbutrin for a few months, and I slept poorly for those months. But, how do you LOWER seritonin levels? Unsure such a thing is even possible - maybe with that French drug - minitripine? The one that is a seritonin reuptake accelerator or whatever.... but as a rule, I try not to take a drug merely to quash the side-effects of another drug. What is this about test:estro levels? I ate another onion today, and I have been feeling like there is a lot of presure in my head, I don't know if there's a connection. Otherwise, still going strong. Me and another guy from work are going to start working out together a couple times a week.
  9. Livestrong has some advice on how to reduce the sulfur in your onions. http://www.livestron...aw-onions-mild/ One piece of advice is soaking them in water or milk. I like this, because I like to drink milk while eating the raw onions. For some reason the flavors go really well together.
  10. "Got to have some parsley with that onion." Will parsley cut the onion breath? I just bought two jumbo sized bags of peppermint candies, divided them into smaller baggies, and secreted the baggies of mints into various places where I will be able to find them at work - in my work bag, in my car, in my coat pockets, because I know that many people regard bad breath as if it were some of personal slight directed against them. I don't know anything about MCAS. But, I am pretty sure I don't have problems with methylation. My pots is pretty much confined to my legs - they retain fluid and don't recirculate blood very well. idiopathic, localized dysfunction of the venous return mechanisms. Something I am interested in though - is whether raw vegetables can accelerate liver function. I've been taking nuvigil for the past few weeks too* and although it keeps me awake during the day well, it also keeps me up at night. I've been thinking that this is because the drug is still in my blood at night and wondering if I could speed up the clearance somehow. *(nuvgil preceeded onion diet signficantly, so I am not getting the effects of the two conflated)
  11. I've been eating raw onions lately, because I read that Iranian scientists found that onion juice raises testosterone levels in rats. In addition, some article I came across said that the onions have a lot of quercitin, which is an antioxidant that has exotic psychoactive properties. Anyway, I feel great! I use www.brainturk.com to keep an index of my cognitive function scores (trying to quantify brain fog), and they all have been going up the past few days. Who else is eating raw onions? Maybe only men should because of the testosterone thing...but I read that it increased luteinizing hormone, and so only increased testosterone indirectly. Not sure if women would turn luteinizing hormone into testosterone or something else. But worth thinking about!
  12. Hello, Can any male dysautonomics comments on their libido? Normal, increased, or reduced since dysautonomia set in? Reduced libido may not be the right word for what i'm experiencing: I have finally been feeling well enough that I've started dating, but not really feeling any enthusiasm for any of the smart, pretty, ladies I've been out with. It's mysterious and frustrating, because the ladies seem to notice too - half the time I tell these highly desirable women "I just don't feel it going anywhere between us" and half the time, after a few dates THEY TELL ME they don't want to see me again because 'we don't have any chemistry." I have enough energy and motivation that I want to date and start having relationships again, but I don't seem to have any enthusiasm. (I already used that word). I don't find women exciting or interesting from a male perspective anymore.
  13. I would think that you could make your POTS permenately worse in a couple of ways: 1) exposing yourself to nerve gas. 2) if you developed a DVT, and the clot went through your legs and ripped up the capillaries so that you muscle pumps no longer worked. Highly speculative though!
  14. Does Eucommia treat stage-fright the way beta-blockers do?
  15. I just read this article which compares CFS to Post-Polio fatigue, and argues that the fatigue is neural in origin - having to do with damage to the Basal Ganglia. The symptoms of Post-Polio fatigue and accompanying brain fog reminded me of complaints I read from dysautonomics on this site - word finding difficulties, impaired short-term memory, difficulty with concentration. Polio is a disease that primarily is thought of as attacking the nerves, but apparently it attacks part of the brain. Perhaps some of the dysautonomics who suffer from autoimmune neuropathy have had their immune system chew up the neurons in their brainstem as well. Just a thought. One of the more interesting sections: "Polio survivors reporting severe fatigue required 23% to 67% more time to complete tasks requiring sustained attention and vigilance than did polio survivors with no or mild fatigue.In spite of these marked impairments of attention, CFS patients and polio survivors have been shown to have I.Q.s within the high normal or superior range and have higher than average levels of educational and professional achievement (Table 1)(17).Further, despite the high frequency of subjective complaints of memory impairment in CFS patients and in 87% of polio survivors reporting fatigue, verbal memory has been shown to be intact on testing in both groups (16,19,20).However, polio survivors have twice been shown to have trouble recalling visual information whether or not they report fatigue (7,16). These findings indicate that fatigue in CFS patients and polio survivors is associated with impairment of attention and information processing speed but not of memory or thinking ability.Given the findings of frequent and severe poliovirus lesions in the brain's activating system, it was hypothesized that damage to the brain's activating system is responsible for both fatigue and impaired attention in polio survivors." http://www.ippso-world.org/ppsinfo/articles/bruno/fatiguetreat.html
  16. > The symptoms that improved the most included fatigue (55%), That is what I'm looking for! Unfortunately, I'm at 60 mg X 2 a day, and still no benefits.
  17. I am fascinated by the idea that strengthening the skeletal muscles can help us improve our circulation and compensate for some of the symptoms of POTS. Several months ago, I complained that I could find no evidence that the abdominal muscles can faciliate venous return. My complaint was motivated by the fact that rehabilitative exercise programs like Dr. Levine's have a lower body resistance training component. At that time, I could only find evidence that the calves and glutes function as pumps. So, I was unable to explain the justification for an exercise program that also includes the hamstrings, hip stabilizers, and obliques. Well, I have since found some evidence that the abdomen can function as a muscle pump: http://www.plosone.o...al.pone.0005550 The article discusses the potential for the abdominal muscles to return blood, like a mini-heart. They seem to indicate that it would have to be actively contracting and relaxing in order to function. It seems that they're saying this happens during breathing - normal breathing causes the abdomen to pump out blood. But, it's a little unclear to me.
  18. I have been "accepted" into Dr. Levine's exercise program, but I haven't gotten the information from them after 4+ weeks of waiting. I am not sure I'm going to adopt their program - I've been pursuing my own system during the month I've been waiting: 140+ BPM for 30-40 minutes 3 times a week, and 6 resistance workouts per week (2 legs, 2 upper/lower back, 2 chest/arms). If they ever get around to sending me their BPM recommendations, I may adopt those, but I don't know that I'm obliged to follow through with the study - they've left me hanging for quite awhile.
  19. >I did notice that mestinon seems to cut the sympatho symptoms more than the energy thing, so i still feel really fatigued. When I was at Dr. Stewart's this summer, he told me that they are looking into an old drug used for Alzheimer's that works along the same lines as Mestinon, but crosses the blood-brain barrier. Maybe that will yield results for fatigue as well.
  20. I took my whole daily allotment at once today, to see what would happen. Nothing. Some super-strange sensations came and went, but nothing beneficial.
  21. I also just started taking mestinon. I have been taking 30 mg X2 daily for a week. However, it has no clearly discernable effects! I think maybe it makes me sleepy and a little feverish, but I can't really tell for sure. I certainly don't feel any better. How long did you stay at the lowest dose before you upped? The doctor didn't seem to have a plan, so I'm going to have to call him tomorrow.
  22. I have been lifting weights seriously for over a year. I get headaches, and become dizzy when I do squats. The next day, I'll feel pretty bad - weak and can't concentrate.
  23. So I've been doing the tanning - I skipped a day last week because I spent a good amount of time outside in the garden. I think I am feeling better. I only did 17 minutes total last week (plus a couple hours of outdoor time), and I've logged 6 minutes tanning so far this week.
  24. MommyGiuliana: I looked up the Levine that your source is quoting. It is not well written IMHO. Not the best research article. This is clearly not your fault or the internet source's fault. I suppose it might not even be the author's fault - it might just be that I am not trained in dermatology and so not the intended audience. however, it's not clear how 1 MED relates to vitamin D. My understanding is that 1 MED is the amount of time it takes to "turn the skin red." Not only is the concept itself vague, but there is no neccesary connection between red skin and vitamin D production. The article seems to assume that 25 % MED correlates with adequate vitamin D levels. But this is troublesome because I don't want 'adequate' levels, I want higher than normal levels - I want to be at the maximum healthy range. But the article does say "Not only is extended tanning unnecessary for adequate vitamin D production, but it is seemingly counterproductive because at approximately 1 MED of UV radiation, vitamin D production and destruction reach equilibrium. " So, this quasi-helpfully, seems to say that if you're indoor tanning long enough to get a tan, you are tanning too long for increased vitamin D. They also discuss the links between indoor tanning and cancer - but all the studies seem to be on people who are indoor tanning for the purpose of being tan. They are averaging 20 minutes 3 times a week. That is twice what I was aiming for. If anyone wants the article. I will send it to you (thank god for college alumn library priveleges!) - private message me.
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