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Random-Symptom Man

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About Random-Symptom Man

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    Boulder, CO

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  1. Hi all, I just wanted to give you all a positive update In hopes that the drug cocktail I’m on will help them. This is not a recommendation, but a point of data for the community. I’ve been on an odd cocktail of meds prescribed by docs at Johns Hopkins for the last few months: - Olanzapine (very helpful) - Cybalta (less helpful) -Lamictal (useful for nerve pain) -methyl-B-12 injections (extremely helpful) While I’m not quite my healthy self, I’m closer to normal than I’ve been in years. My pots is nearly gone. No more heat intolerance. My GERD and gastric em
  2. Sorry if someone already posted this. A group may have isolated an enzyme, EZH2, that may silence some genes, which may be responsible for some amount of POTS. they say there may be a drug, GSK-126, to inhibit the enzyme: https://www.drugtargetreview.com/news/57007/drug-discovered-for-postural-orthostatic-tachycardia-syndrome-pots/
  3. @Abe - Sorry to hear about your stomach issues. All of us are different and weird. I talked to a dietitian. Unfortunately, she wasn’t familiar with dysautonomia. She recommended everything she recommends to everyone else. I found it less than useful. But if you can find a dieticians who can work with you, it could be helpful. I had much more luck with other docs. Below are some thoughts. You may know all of this, but in case you don’t: Have you had a colonoscopy and/or endoscopy? Not fun, but these can help rule out a lot of issues like ulcers, parasites, growths and more. Mine wa
  4. Thank you @Pistol. I have considered MSA. I was under the impression that MSA didn’t show hyperintensities in the subcortical and periventrical portions of the brain. It is supposed to be a brain stem issue (I think). But I am not a neurologist, so I could be wrong. I do try to stay positive. We all have weird symptoms here and uncertainties. I am lucky in so many ways, just not in health. I just need to be patient for the day I can get the right meds that actually help. Thanks again.
  5. I think the answer is going to vary for each of us based on age, marital status, children, work status, family support, benefits, severity of our conditions, local cost of living, net worth, and more. I still have hope of returning to the work force some day. I’m fortunate that my prior jobs paid well. My wife is changing her job for better benefits, greater stability, and less stress. I am eternally grateful for her. She is the best. My in-laws moved Next door so we share resources and help each other out. We put some of our savings into a rental property so we now have passiv
  6. Hi all, I have been less frequent around here lately. Over the last year, I’ve been getting more motor function issues. Muscle cramps. Muscle twitches. Resting tremor. My right (dominant) hand is the worst. Gate issues when I walk. Bell palsy. REM sleep behavior disorder. Stiff muscles. They just found hyperintensities in the white matter of my brain on a new MRI. It is “periventrical and subcortical”. There is also widening of the solci and narrowing of the gyri. Basically I’m loosing mass in the folds of my cortex. Question 1: I’m curious if anyone else has had similar results? Whe
  7. @Nin - walking is no fun for me - especially chairs. I used to go for walks all the time. Anything upright that is strenuous tends to set me off. I can exercise laying down without much problem. I do Yin yoga because I can sit or lie down the whole time. Some days I can walk without any issue. Other days I want to pass out or puke. I tend to do better when I am cool. Heat and walking don’t mix for me.
  8. Hi @ReginaH, Welcome. I’m sorry you’re having these symptoms. But hopefully you’ll find this forum as helpful as I have. I drink much more fluid than that. 160+ ounces. This amount helps me. I haven’t found that compression socks/pants helped at all. Temperature regulation is key for me. If so get hot, my PP drops. I take Luke-warm showers sitting down now. I make sure to drink a bunch of water at least 20 min before I shower. If I don’t follow this, I’ll pay for it on most days. A good night’s sleep and naps also help a ton. Small meals also helps. Or at least not
  9. I stuggle with food. I rarely want to eat. I used to love to eat. I find that regular eating is better for my overall condition. In general, regular routine is better for my condition. More regular meds of any kind themes to be better (1/2 twice daily vs. 1 once daily). I keep a small Shoulder bag on me at all times. As a man, I’ve heard plenty of purse jokes. But it’s sporty, so very few people comment on it. I keep snacks and meds in it. I also keep earplugs, sunglasses and other things that help me when my nervous system freaks out. The snacks and TUMs really help.
  10. @cleo - sorry you’re struggling. Medication changes suck. I’ve had a similar experience with another medicine. There are a lot of inactive ingredients in many drugs. I always look them up at dailymed: https://dailymed.nlm.nih.gov/dailymed/ they have a huge list of meds and all their inactive ingredients. Hopefully you’ll be able to find what sets you off.
  11. @kisekis - +1 to Pistol’s response. My doc said that every patient is a bit different. This discussion group seems to prove that. For me, he started with a low level antibiotic, Xifaxan, that isn’t supposed to cross into the bloodstream, nor kill much of the ”good” natural biom in my gut. I unfortunately did not see much improvement from his plan. Since then, I have less gastric emptying, and more gastroparesis. I rely on antacids more now than ever. I was already on Zantac which is the best thing for me. Zofran does well at reducing nausea. For me, sugars, dairy and spices m
  12. Great idea. Here are some of my plots. Tracker: Samsung Galaxy Watch 2. These data are averaged, so they don’t show the sudden spikes. Dx: dysautonomia, pots, presyncope, sweat gland dysfunction, dry eyes/mouth, gastric emptying/paralysis, light sensitivity, muscle cramps, fatigue, bell palsy, lack of temperature control, brain fog, nerve pain, numbness, and the list goes on. Image 1: potsy Day image 2: after a shower, my day was destroyed. image 3: normal day image 4: potsy day. Image 5: 1 hour where I got up for a snack, more water, and a restroom break
  13. @kisekis in response to your question : My gastroinerologist was the first doc to propose Dysautonomia as the source or result of my GI and other issues. I didn’t/don’t have MCAS. my food sensitivities are only very low. My symptoms don’t change with diet. While there are foods that can trigger worse symptoms (really spicy, too much sugar and moldy cheeses), there is no food combination that makes my GI behave normally. I took notes for years and showed them to my GI guy. My endoscopy/colonoscopy was fine. he ruled out several other things, and Dysautonomia was one of the remaining option
  14. For me, poor sleep definitely increases my POTS. Stuffiness and pots are correlated too. My ENT prescribed Olopatadine. Now, my stuffiness is a lot better than on Flonase or Nasacourt. My docs think that my body’s overproduction of mucus is just another form of autonomic dysfunction. One of them was saying that it’s just like dry eyes, dry mouth, or sweating dysfunction (all of which I have). Also, controlling my GERD helps both my breathing and my sleep, which in turn helps my POTS.
  15. Welcome @Gabe15024. I’m glad to hear that you are feeling better. I have slightly high Epstein Barr Virus compared to normal, but it isn’t considered high enough to be described as chronic Mono Barr. EBV is the mono disease, just At lower levels. Many people get Dysautonomia after an infection of one kind or another. Some people can recover quickly from the original illness, and still have prolonged Dysautonomia symptoms. Some people manage their Dysautonomia symptoms faster or slower, Or not at all. Some people never have symptoms again. Others do. I hope you continue t
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