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Everything posted by green

  1. Saturday I ran with a running club - 4 miles, BPM=>~160. High intensity running - up a hill, kept pace with healthy fast runners 10 years younger than me. Prior to running, I took my highest dose of anti-histamines yet: ranitidine 300 mg, fexofenadine: 540 mg. After the run, I did not stretch well according to my experimental routine - I was too embarrassed to put my legs over my head as I cooled down with the running club. Then I quickly consumed a v. large quantity of carbohydrates to spur recovery, by rushing to Steak N Shake and buying a shake and fries. That day, I started work on a new business. Did some great quality work. Very pleased with myself. That night, I slept well enough: 8.5 hours! It is RARE for me to sleep so well the night after a hard run! SUCCESS. The next day, I went to church and did well standing around afterward drinking coffee and talking with the congregation; no mind-crushing brain fog. Decided to skip exercise Sunday so as not to push my luck. But that afternoon, I went home to work, and I was EXHAUSTED! And then I slept 9+ hours last night - went down in a fog, as though I had run a race earlier that day. And I woke up today, and I am still in a fog. It's noon and I'm just now trying to get to work. I am tired, sluggish, foggy. The temperature has gone back up - we're back in the 90s again, so maybe that it is it? So, I don't know if the anti-histamines are working or not. It seems that, perhaps, they do, perhaps they just DELAY onset of the post-exertional malaise. What a mystery!
  2. I use "snus" it is a spitless, flameless, tobacco product, available at gas stations throughout the United States of America (I think). Snus really helps me! The cancer risk for snus is thought to be MUCH lower than with cigarettes, since there is no flaming involved in the consumption of the snus. That said, I have learned that it does elevate your risk of pancreatic cancer, and so I have been switching to nicotine patches. Nicotine patches also really help me. In general, I think nicotine is the most useful drug for POTS I have ever found.
  3. Hi dancer65, Yes, that is helpful! It is heartening to hear that other people have the same pattern as I do. When you say that resting too much makes things worse - I get that too. And, I also find that I may have trouble initiating sudden movements, but can easily ramp up to moderate exercise if it involves using the legs continually. The temperature just dropped from the high-80s into the 70s here in St. Louis, so I am doing a little bit better during the day right now.
  4. Start with recumbent biking; bring a device with you and watch a movie while you bike. best of luck!
  5. Thank you for writing! What is midodrine for? I used to take mestinon, I think it causes vasoconstriction...I can't remember if it helped much. A weird thing: sometimes I peruse the archives on this very forum and find posts I MADE where I say "blah blah X is great!" and I think "why did I stop taking X?" and I can't remember. I have another question for you: when you exercise past the point of making yourself feel worse, do you enjoy a multiple hour 'honeymoon' during which you feel significantly better? I often feel so much better for hours after exercising - less brain fog, better mood, and movement is easier - and THEN the crash comes with sleepiness, followed by worsened brain fog the next 24-72 hours. As an update: I DID actually get back to work yesterday - the sleepiness passed. I had some trouble sleeping last night, but I did get about 7 hours. So, maybe the routine I invented was helpful and DID something. I'll have to keep at it - I figure I can UP the amount of time I spend warming down and stretching. Definitely woke up with stiff bloated legs though! ugh!
  6. I've been trying it. I ran my dosage on fenoxadine up to 540 mg and my ranitidine dosage is at 150 mg. It doesn't seem to stop post-exertional malaise. I've been told that blood pools in my legs after exercise, so I will hope to increase my benefits by combining anti-histamine pre-treatment with a more exaggerated cool-down, increased stretching, and icing. It's frustrating - this morning I rode the bike for 40 minutes. Then I was careful to warmdown for 10 and stretch my legs, including stretching them while elevated above my head (to discourage pooling) and yet, despite all this, at 3 PM I started to feel so tired that I doubt I will get much more work done today. Frustrating, indeed.
  7. >I am sorry you had such a bad time with Lexapro. I only want to point out that you said in a previous post that you just stopped it - that is probably why you had these terrible symptoms. I do very good on Lexapro and one time had to wean off to try a SNRI instead. I had no problem weaning slowly over several weeks but did not tolerate the SNRI, so I started back on Lexapro. --- We all react differently to drugs so what one tolerates another does not. I just want to add my 2 cents so other members don't get unnessesarily afraid of SSRI's.  Of course! People may have a wide variety of experiences. But, I stopped it abruptly because I did not feel well on it. I'm glad it's working for you!
  8. Odd sensations in the head! Yes! I have taken some SNRIs and other weird anti-depressants (strattera, wellbutrin), they ALL give me weird sensations in the head while adjusting on or else withdrawing, except for the MAO-I Selegeline. That said, I now recall that I had anxiety and insomnia with the MAO-I selegeline. I swear to Socrates that the psychotropic drug companies must be suppressing adverse event reporting and concealing evidence of side-effects, because to this day doctors will pressure me to take anti-depressants on the grounds that they are so safe. Who are they kidding? That said, take heart that I definitely got better. Also one thing worth saying: although my experience of withdrawing involved the temporary loss of abilities, I have to say that it was not an unpleasant experience. The hallucinations were mild, and not upsetting, the depersonalization was a relief (I felt that I did not exist, and ergo had nothing to worry about), and I remember that colors were brighter and it was easy to meditate (because I had no thoughts in my head). It was a loss, because I wanted to read and write and work, and was sort of worthless, but it wasn't intrinsically uncomfortable. The psychtropic drug companies should be forced to buy people withdrawing from SSRIs a years vacation time. The jerks would have to think twice about claiming their meds are safe when they are not!
  9. I've posted elsewhere on this forum that I too had an awful experience withdrawing from Lexapro. Including psychomotor retardation, difficulty reading and writing, depersonalization (feeling like nothing is real) and hallucinations. It took a year to return to baseline. I don't understand why the doctors are not more willing to prescribe the MAO-Is. I took the MAO-I Selegline (brand: EMSAM) for awhile while recovering from Lexapro. Selegeline was easier to wean off of. As recently as this summer I have had good results taking rhodiola rosea. It is an herb used to treat mountain sickness and fatigue. It is an MAO inhibitor. After about two weeks, it starts to loose effectiveness, so I am cycling 2 weeks on 2 weeks off.
  10. >How did you wean off the Lexapro? It can give you bad symptoms if you do not reduce the dosage slowly over at least 6-8 weeks ( even more if you were on it for a long time ). I just quit. Yes, it was tough! Now I am afraid of anti-depressants!
  11. I was at my worst when I withdrew from a drug called "Lexapro," which triggered a worsening of my POTS symptoms. I thought I had had a stroke. I told people that - because I could barely read or concentrate. A neurologist who examined me suggested that I was just depressed. Eventually, I got better. It is really an awful thing though - temporarily losing your cognitive faculties - and you'd think that the world would put more money and resources into treating POTS and other conditions that rob otherwise healthy people of their autonomy and cognition.
  12. > It has some side effects that I think can negate its use; dizzyness and drymouth. These are already dysautonomia symptoms which might increase with this supplement, so caveat emptor. Maybe call your doctor and ask their experience with this herb. > I report zero side-effects. There were no side-effects whatsoever.
  13. I tried rhodiola rosea again. This time I bought raw, cut herb from a reputable supplier. I brewed a tea each evening - four tablespoons into a half gallon of boiling water, let sit in fridge overnight. I quaffed the tea all day. I did not add anything to it. It was reddish in appearance and mildly bitter to taste. My stamina, mental disposition, and anxiety, all gradually improved over the course of a week. As three weeks approached, the stamina improvements began to decline. So I stopped taking it. I missed the gains in anxiety and overall disposition. A month later, I tried again with a tincture. I made a tincture by mixing Everclear and rhodiola rosea. I let the tincture sit for four weeks. I used a dropper - maybe 20-40 drops per dropper. I took four dropper-fulls a day. Same effects as last time. But, great savings on the tincture (seems to make the same quantity of rhodiola rosea last longer) I conclude that anyone could buy rhodiola rossea and make an 'emergency support' tincture to keep in their fridge and start using when times get especially tough. Which is not to say that times are not already especially tough if you have dysautonomia. Rather, you may be able to find a charitable interpretation of what I have said that renders the advice sage. Green
  14. What do you mean by saying 'root cause'? You now have some evidence that your symptoms can be explained by autoimmunity. Autoimmune disorders are disorders wherein the immune system attacks the body, or attacks some molecule that the body produces endogenously and serves some functional role. So, you have, perhaps, traced one further link back in the chain of causes responsible for your symptoms, but I would think that the autoimmune condition itself was caused. And if the autoimmune condition was caused, then what caused that? Perhaps that is the root cause, or perhaps there will still be some further cause for that further thing. Perhaps this means that you can look forward to focusing on treatments that treat autoimmune POTS, or, you can now research possible treatments by researching about autoimmune disorders more broadly, instead of just focusing on POTS? I hope so. I think it is an interesting thing to think about. You could have POTS caused by an autoimmune condition caused by a gene/pesticide interaction caused by the fact that people won't stop dumping pesticides into the water supply, caused by bad farming practices made possible by an underprotective EPA. What is the root cause in that story?
  15. I'm experimenting with arm-pedaling! Five minutes yesterday Seven minutes today. I also lift weights and do stationary biking (but I want to swap out the stationary biking for arm-pedaling as per an experiment)
  16. Subsequent uses of kratom brought ill-effects! I have given up on kratom.
  17. I really like liquid magensium. It helps slow down my heart and helps me sleep. I don't think I have hyper pots though. I don't really know. I did not respond well to magnesium pills. They did not seem to have any effect, but liquid magnesium does help.
  18. I tried Kratom today and it is pleasant and it does seem to have helped me out of a POTs fog. I am especially foggy today because I bicycled yesterday and the weather has been changing today, so two different things have been working against me.
  19. Hi all. I am confused or uncertain about issues related to the 'medical consensus' on dysautonomia. Can anyone answer: 1.) Who do you think are the consensus-shaping experts? Do most people think that Dr. Julian Stewart/Levine, The Mayo Clinic, and The Stanford Autonomic Disorders Team are the research leaders within the U.S. on POTS and dysautonomia? Are there other research leaders of note? 2.) Have any of these research leaders produced books or review articles on their understanding of what is going on with POTS? 3.) Which professional medical organizations work on POTS and/or dysautonomia? Is there a research journal dedicated to autonomic disorders? 4.) Who is working on POTS and/or dysautonomia in other countries? Can they talk to researchers in the U.S.? Would we even know if they're out there? (i.e. if there are a bunch of Japanese scientists out there working on POTS, would we even know?) By way of explanation - for years I have thought of myself as having dysautonomia and POTS. I once even saw Dr. Julian Stewart's lab and they indicated that my condition falls more into the venuous-pooling-in-the-legs category (whichever that is). I want to double-check the research consensus on exercise being the basic standard for treating my subtype of POTS. I've noticed that there's research suggesting that exercise can make CFS worse, and I've wondered if that research might have more relevance for me than the research suggesting graded exercise helps. On a personal note: I've been baffled with regards to exercise recently. I know my POTS was best years ago, during a period when I was doing no running, but recumbent bicycle riding. It seemed to get worse gradually during periods where I returned to running - first in college (for 8 years), then later in grad school (2 years of half-marathon training, with speeds in races >90% of the men in my age group, speeds suggestive of a HIGH degree of cardio-fitness). And, currently, I am doing just 30 minutes of recumbent bike riding daily at high resistance, and I seem to be doing A LOT better. It seems that I adapted to hard cardio - in the sense that I could run fast and long - but did not improve my POTS. At the moment, it seems that I am de-conditioning (as I get out of shape) from hard cardio - for I am getting slower and more easily winded - but my POTS is starting to get better again. And yet, there could also be some special relevance to the fact that I am engaging in heavy resistance on the recumbent bike. Personal experience is my gold-standard: whatever works for me is what I will do. I don't care about the medical consensus. I will trust my own experience. And yet, I have to admit that there are always potential confounding factors obstructing straightforward assessment of my own personal experience. For example, the period during which I was doing better, I was also in California for some of that time, I had less stress, I was younger, I consumed a different diet and took different medicines. It is so hard to navigate having a long-term condition like POTS, for which the medical community has something to teach us, but the state of the research is still fuzzy and ill-formed.To illustrate: Compare the idea that there are multiple types of POTS to the idea that there are multiple types of HEPATITIS. There's real strong consensus on the existence of different forms of hepatitis - there are well-established diagnostic tools with high specificity and accuracy at identifying A,B, and C, and there are different vaccinations for each of A,B and C. To my knowledge, this is exactly the opposite of the situation with regards to the different POTS subtypes. And why is this? Green
  20. Yes. Mornings are bad for me. Really, my brain doesn't start to boot-up until around 2:00 PM. Sometimes on a really good day, things start to boot up at 11:00 AM. I wake up at 6:00 AM and eat a big breakfast, so that I can distribute some of the negative effects of eating (post-prandial stupor) to a time in the day when I am not very functional anyway.
  21. Hi, I am sympathetic to your view that the POTS focus is a problem. When I was first having trouble with orthostatic intolerance, I was desperate for help. I sought help from doctors by trying to ensure I got labeled 'POTS' by failing a TT-test. I felt a lot of anxiety about how at one point I 'passed' and thus did not have POTS. I've done the TT three times, and had 1 result that indicated POTS and two that didn't. Eventually, I was able to reconcile myself to the reality that I have orthostatic intolerance, and, fatigue that worsens with changes in the weather, with heat, that makes it hard to stand still for long periods of time, without feeling that I needed to label it POTS. But, I used to be really intense about it, because I thought POTS medications would help me. Nothing ever really helped though, and I guess now that I'm reconciled to the idea that medications are not the answer, I feel less distressed about the need to ensure my condition is labeled POTS. I do wish that they had found the underlying cause of my condition and helped me to treat it, but my sense is that the science isn't really at the point where they can definitively label what's wrong with me.
  22. Has anyone tried Kratom? One website says "It can increase your energy levels by optimizing certain metabolic processes and impacting hormone levels. This is a result of increased circulation, despite its soothing nature, and a general increase in oxygenated blood to areas of the body that needs it, combining with increased metabolic activities to provide a burst of energy. For sufferers of Chronic Fatigue Syndrome kratom leaves are often an alternative, natural solution." I almost bought some Kratom today, but I tried it in Florida a few years ago and became sick. Sincerely, Green
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