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green

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Everything posted by green

  1. You have my prayers. God's peace be with you. -Green
  2. This says the Phase III trial will be finished in January of 2010. A little less than a year! On the other hand, does anyone have any thoughts on how much this drug will cost when it hits the market? Chelsea will have exclusive rights to it for seven years. I pay 400 $ a month for provigil. I guess Droxidopa will be about the same? Maybe more?
  3. I also experience the caffeine dilema: over-active CNS or under-active CNS? Also, I've found that there is a crash when the caffeine wears off. Weakness and fatigue.
  4. Here is an aside question: Dr. Grubb said I even looked like a hyperadrenergic Pots patient. He confirmed the diagnosis with tests, but it made me curious what was the "look: or visual cues that would indicate the Hyperadrenal variant. I think they have pale clamy skin.
  5. Hey, For those of you who know that you have autoimmune problems, that you have elevated levels of a certain antibody, etc. How did you find out? Are there specialty labs for dysautonomia that include autoimmune testing as part of their standard approach to diagnosing dysautonomia? Furthermore, once you found out you had an autoimmune condition, could you do anything about it? Immunosuppressants? I have narcolepsy and asthma and I guess I've pre-diagnosed myself as having dysautonomia that is autoimmune in origin and I want to prove it and do something about it (do something other than eat an "anti-inflammatory diet" )
  6. Does Tumeric go bad? I've been consuming about 2 tablespoons of curry powder a day for the past 2 months. Tumeric is the second ingredient listed. This could be a major confound - I started using the curry powder in my food at the same time I went ketogenic. And I've had memory improvement since then. I would be thrilled if the memory improvement were due to tumeric instead of being ketogenic.
  7. Hello everyone, I have the opportunity to go on a skiing trip with my family this spring. We're supposed to spend a week skiing in Keystone Colorado. I want to go, even though I expect that I'll spend the week in the ski lodge reading and swimming rather than skiing. But I've been worrying about the high altitude. The base height at Keystone is 9,000 feet (the mountain peak is 12,000). This concern might be unwarranted, but I'm worried about the potential for mountain-sickness related brain damage. Here's a link to an article saying that healthy people can suffer brain damage by quickly transitioning from sea level to 14,000 feet (http://climbing.about.com/od/mountainclimbing/a/AltitudeStudy.htm) If normals are at risk from a 14,000 foot increase in elevation, then I wonder whether someone who has impaired orthostatic tolerance is at risk from a 9,000 foot increase in elevation. I figure I'll spend the first night in Denver. The elevation there is 5,000 feet. That would give me some time to acclimate. But the more I think about it the more unnerved I am at the idea of spending a week at 14,000 feet. Thanks.
  8. Whoops. When I wrote that I consume "1 - 1.5 grams of protein per day," I meant to write "1 - 1.5 grams of protein PER KILOGRAM OF BODY WEIGHT" per day.
  9. An update: I am about 27 days into the diet now and I am feeling much better! My OI seems no worse than it used to be and my memory still seems much improved. I strongly believe that much of the trouble people have reported with the initial stages of this diet is due to the loss of potassium, salt and the resultant dehydration that occurs when one lacks electrolytes. Being dehydrated and potassium deficient may be particularly hard for someone with a dysautonomia. I have been coping by getting most of my carbohydrate ration from bamboo shoots which have ~250 mg of potassium and 2 g of carbohydrates per cup. (here is a link to a list of some potassium rich foods: http://westernhealth.nl.ca/uploads/healthy...vegetables.pdf). I have also been drinking water, taking electrolyes supplements (but sparingly, because my "nuun" tablets have sorbitol in them, which is a sugar) and pouring salt on my oil soaked meatloaf dinners the way cheese lovers will pour parmesan on their spaghetti. I am pursuing a more relaxed modified atkins plan - < 20 g of carbs, 1 - 1.5 grams of protein per day, and the rest of my 2,500 - 3,000 daily calories from fat (primarily olive, flaxseed and coconut oil). Those numbers are much much higher than my original calculated needs - regular exercise dramatically increases the amount of carbs and protein one can eat without exiting ketosis. I also lift weights and I think this is really complicating things - I've been advised that I need to break the diet once a week to replenish my muscle glycogen stores so I don't become weak and unable to lift. I have had success taking 36 hour breaks to eat a couple sweet potatos, bannanas, etc. during the weekend, and I suppose I will keep doing some kind of break whenever I do a heavy weight-lifting workout. So, I am sticking with ketosis, at least 80 % of the time, for now and have recorded my experience thus far here for posterity! Contact me if you read this and have experimented with the diet yourself!
  10. Hello, Sorry to let this thread die. Flop, thank you for the detailed exegesis of the Krebs cycle. Biochemistry is fascinating, even to someone who barely understands any of it, like me. I wanted to report on my experience experimenting with a ketogenic diet. I'm on my 16th day now and it hasn't been so great. I may have been wrong about the diet being a treatment option for people with dysautonomia - apparently, it causes dehydration through loss of electrolytes. I think this is why my OI has certainly been much worse, and even though I've been drinking electrolyte supplements and getting my carbohydrate ration from potassium rich foods, I still feel drained of energy. It has seemed to help my brain fog - my memory seems sharper and I've been able to concentrate longer. This could be a kind of placebo effect though and the loss of physical energy almost outweighs the benefits. I'm probably going to quit / adopt major modifications tomorrow. I wanted to report back on it though.
  11. I also felt better living in California than I do in the midwest. (particularly during the Midwestern spring). Where else is the climate theraputatic for people with dysautonomia? All I know is that Southern California has the same climate as certain parts of the Saudi peninsula and most of the areas bordering the Mediterranean ocean. I have often thought about going on a visit to the desert regions of the Southwestern United States to see how I feel there. But have never gotten around to it.
  12. Flop. What you say is interesting to me. I agree that there is a difference between high protein / high fat diets and the ketogenic diet. I am under the impression that the traditional Inuit were actually in ketosis most of the time, because they obtained many more calories from fat than meat. However, I don't know much about this topic first hand - I read about the Inuit in this article ( http://www.nutritionandmetabolism.com/content/1/1/2 ). Because the article referenced the ketogenic diet and the Inuit, I assumed the Inuit ate a ketogenic diet, but on re-examination the article appears ambiguous as to whether their diet was ketogenic or just very low carbohydrates. Do you mind me asking why it is that you check for ketones in your urine? I have heard of urine ketone tests for ketoacidosis, but I read that ketoacidosis is the result of a deranged metabolism, while ketosis is a normal metabolic state that results when the body is using fat for fuel. Is it because you want to avoid ketoacidosis, or for some other reason that you check your urine for ketones? I am getting ready to try this ketogenic diet, barring new revelations about the risks. I am counting on their being a significant difference between high protein / low carb diets and high fat / moderate protein / low carb diets; I tried an high protein/low carb diet last year and I was very irritable much of the time. I am under the impression this was because protein is a very inefficient source of energy relative to both carbohydrates and fat.
  13. I just noticed that the topic of ketogenic dieting has been broached before on this forum, with one dieter reporting anxiety and hunger. Flop and Earthmother - the merits of nutritional holism not withstanding, ketogenic dieting is safe if managed properly. As evidence, the inuit people of Greenland subsist on a ketogenic diet and they are renown for their feats of physical endurance. From what I've been able to gather a ketogenic dieter risks hypernatremic dehydration (dehydration due to electrolyte imbalance), constipation and vitamin-deficiencies. These can be prevented with supplemental sodium/potassium, vitamins, and fiber. Cholesterol problems are rare and I suppose they could be minimized by eating plant oils instead of animal fats. (my sources are: Miller, (1998) Iatrogenic Neurology, and Freeman (2006) The Ketogenic Diet). Dr. Freeman says that the diet is a serious medical intervention that should only be used while under a doctor's supervision. I think there must be an additional risk to people with dysautonomias - the loss of body volume due to dehydration and carbohydrate depletion would exacerbate orthostatic intolerance. I wonder if this is why the sole previous ketogenic dieter on this forum was struggling so much?
  14. I've come across some interventions that potentially improve peripheral blood flow: Bodybuilders sometimes take "L-arginine" supplements because they improve NO availability and relax the small blood vessels. Watermelon contains an amino acid called "Citrulline" that works the same way. Here is an article about it: http://www.biotech-weblog.com/50226711/cit...ike_effects.php (you have to get past the 'viagra-like effects' spin that the article has and attend to the theoretical significance of that) Also, cholesterol medications may relax blood vessels.
  15. The ketogenic diet is used as a mainstream medical treatment for intractable epilepsy. It involves reducing calorie intake to 70 % of RDA, and eating a 2:1 - 4.5:1 ratio of calories-from-fat to calories-from-protein-and-carbohydrates. No one knows why this helps with epilepsy. It seems promising as a potential treatment for POTS for a couple reasons: 1) it allows current body weight to be maintained while reducing meal size, and virtually eliminating carbohydrates which seems like it would help with post-prandial fatigue. 2) it is supposed to increase energy levels by altering metabolism (but no one knows exactly how this works) Has anyone ever tried it?
  16. >These classifications are based on his groups findings and not on symptoms. But one of the three - low flow now has a potential >treatment being investigated. > What treatment are you referring too?
  17. I recently learned that the Center for Pediatric Hypotension at New York Medical College distinguishes between three kinds of POTS: high flow, normal flow, and low flow, POTS. High flow POTS patients are characterized as having "high blood flow, low arterial resistance group with normal to decreased pv (peripheral venous pressure)" Normal flow POTS is defined by "A normal blood flow, normal arterial resistance group with normal Pv..." Low flow POTS is defined by "low blood flow, high arterial resistance, high Pv."* Are these categories used by other clinics outside of New York Medical College? Are three subtypes known to be distinguishable by symptoms? *http://www.nymc.edu/fhp/centers/syncope/circulatory_findings_in_pots_and_CFS.htm
  18. Narcolepsy and POTS Narcolepsy is believed to be autoimmune.
  19. Thank you for the responses! I want a HR/BP monitor to see if there is a correlation between my OI symptoms and low blood pressure, and to see how much my stats change over the course of the day. But, if the monitors tend to be fickle then I'm not sure how much good they would be and whether they'd offer much of an advantage over my current method of monitoring my stats - which is to use an old-fashioned pneumatic pump-cuff w/ stethoscope that I bought from Walgreens for 20 $.
  20. Does anyone own a personal HR/BP monitor; the kind that attaches to your arm and records your vitals while you go through the motions of daily living? I have been shopping for one, and I've been thinking Omron's HEM-637 ( http://www.omronhealthcare.com/product/det...=1123&t=186 ) because I could use it to track how my stats change over the course of the day. What would be better is a HR/BP monitor that can download a day's recordings onto a computer, that way I could build a database and track correlations between symptoms and HR/BP stats. I think that could help me figure out things like - when and how intensely I should exercise, etc. I'd love to hear what your experiences have been with these devices.
  21. This thread looks like its dead, but I wanted to add a remark: I was looking for a post on squats. I've been trying to build up my lower body (actually, my whole body) to reduce my OI symptoms. A few days ago I was doing squats and my neck and the back of my head started to hurt. I could feel blood rushing through the arteries in my neck, and my skull felt like I had just bumped it on something. I've been to the gym twice since then, and whenever I go an anaerobic exercise that raises my HR, I get a headache. I've never been prone to headaches in the past despite having had OI for several years. I had taken some midodrine that day, but it was more than 4 hours prior, so I thought I was safe from risking high BP. Now I wonder if I stressed a blood vessel.
  22. Rainy weather affects me too. Right before it rains I notice subtle visceral and perceptual changes. Then, when it starts I get fatigued and have additional brain fog troubles. I also think asthma plays a role in the way weather affects me.
  23. I want to go to graduate school myself. What are you studying? Did you disclose your condition to your program?
  24. Provigil, singulair, guanfacine and depakote. Depakote can cause brain fog, but I am on a low dose, and I think the brain fog improved a bit with it.
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