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Random-Symptom Man

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Everything posted by Random-Symptom Man

  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 emptying are way better. My light sensitivity is gone. I have more energy. I can think a bit clearer. I had tremor, and it’s way down. The nerve pain is nearly gone. The B12 injections are amazing. I used to take methyl-b-12 orally plus a b-complex with methyl-folate. It did nothing for me. I still take the b-complex. The doctors don’t know why the cocktail is working, they just know it is. If I let the B-12 slide by a few days, I can really feel my symptoms coming back. I know we’re just treating symptoms and not the cause, but I feel so much better I don’t care. My symptoms may return, but for now I have relief. I hope this helps. dx: POTS with presyncope, anhydrosis, Mild ASMA, Brain Fog, Tremor, Light sensitivity, GERD, Flat Gate, Fatigue, Bell palsy, Gastric emptying, Fatty liver, Narcolepsy, and insomnia, REM sleep behavior disorder, Muscle Spasms, nausea, and more.
  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 was clear, but it made the doctors look in a different direction. Do you keep a food journal? There are only a few things that I need to avoid, and a food journal highlighted those. It is annoying to keep track of your GI symptoms including bowel movements. But it was helpful for me. A detailed food journal also helps them believe you (I hate when doctors don’t believe me). It might come in handy for a dietician as well. Have you looked at what is in the medications that you take? As an example, I found out that I am allergic to Sodium Lauryl Sulfate (SLS), which is common in toothpaste. It gave me canker sores. It turns out that SLS is in almost every med that really hurt my upper and lower GI. You can check what is in your meds on https://dailymed.nlm.nih.gov/dailymed/ Do you take probiotics? I switched probiotics until I found ones that worked for me. Do you have allergies or constant nasal issues? My GI got much better once I started taking prescription strength nasal spray (olopatadine). post-nasal drip was a huge issue for me. Like @Pistol said, more frequent small snacks helps me. I can’t binge eat. I can’t drink more than one unit of alcohol in a week, and that has to be hard liquor- not wine or beer (more sugars and other chemicals). I miss wine and beer. I can’t eat lots of sugar, but I can get away with small bits of dark (75%+) chocolate. Spices go through me like Draino. Caffeine also hurts. Another really important factor for me is sleep. This sucks because an upset GI makes sleep hard, and lack of sleep messes up my GI. Vicious circle. The gastric emptying study that @KiminOrlando suggested with barium came back normal for me because I had an oddly good GI week that week. But fortunately my notes where good enough to convince my docs that gastric emptying was an issue for me. I still fluctuate between diarrhea and constipation, but it isn’t as severe, and I have more time in the normal range. I hope you find relief.
  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 passive income. We are still paying the loan off, but at least we have some income. We were fortunate that we saved for our kids college early. We have been cutting back on spending. I’m taking care of the kids more now (and they are helping take care of me). We are going out to dinner less. We cancelled several subscriptions and services. We have reduced our vacation budget. I don’t drink anymore for health, but it helps us save - but every bit counts. We put solar panels in a few years ago, so we don’t really pay for electricity.
  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? When I searched “Hyperintensities” nothing much came up recently. The common source of hyperintensities seems to be strokes due to small vessels in people with hypertension. Given that I have hypotension, not hypertension, and I am only 42 years old, and I’m having increased motor symptoms, MS and Parkinsons seem like real possibilities. I’m getting a lumbar puncture for cerebral fluid and a DaTscan to hopefully rule these in or out. Question 2: Is anyone else here with MS or Parkinsons willing to share their early experiences. I’d like to learn how dysautonomia and these diseases present together. Is there anything special I should know? ——————————————————————— My dysautonomia symptoms include POTS, sweat gland dysfunction, lack of temperature control, brain fog, dry eyes, diarrhea and constipation, ED, fatigue, GERD. Light sensitivity, and a few more. I also have allergies (but not MCAS), narcolepsy and REM Sleep Behavior Disorder. My current meds include Lamotrigrine, cymbalta, Zyrtec, B12 and B complex (methyl...) and Testosterone.
  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 big meals. I have to limit sugar. Some sugar is okay. Lots isn’t. You’ve probably read all this before, so sorry if this doesn’t help. Other people on here are far better at helping than I am. Good luck!
  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 must be eaten in small doses. Actually, I eat smaller portions of everything now. But beyond that, the specifics don’t seem to matter. If I ruled out everything that upset my stomach, I’d eat and drink nothing. Water can upset my stomach. But then again so can bright light, standing up quickly or any type of stress. I used to hope that one diet or another could fix things. But now I have given up un that hope. It seems to me that society and doctors like to blame poor health on poor food choices. I spent a long time trying to find the right diet, while friends of mine ate crap and had great health. I’m not saying eating well doesn’t have its benefits. I try to eat well. I’m just saying that it’s easier to tell people to fix their diet than to help people that have weird symptoms. One doctor said try the fodmap diet. Another says low carb/hi protein. One said, only eat oatmeal. Another suggested vegetarian (it’s hard to do high protein as a vegetarian). A friend of mine espoused celery juicing. Another said an all-liquid diet is the way to go. Another suggested a certain blend of spices every day. I was desperate enough to try many of them. Back when I was little, people thought you needed to eat a balanced meal from the four food groups. Three decades ago everyone said low fat foods are what people should eat. So food companies reduced fat and added sugar and carbs to food to make them taste better. Now they say low carbs. But they add fat to make it tase better. Almost none of the food recommendations are scientifically proven. The only thing that actually improves almost anyone’s health is calorie restriction. Subgroups of people, like the lactose intolerant have easy solutions that others try too. This happenes with diabetes and sugar and With celiacs and gluten. Each diet helps a subset of people. But doctors and other “helpful people” think those diets work for the broader population. The diet that seems to help for Dysautonomia is smaller portions. But it only helps a bit. If you’re flaring up, there’s a good chance you’ll have GI issues too. Sorry for the long diatribe.
  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, then laid down for 5 minutes.
  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 options. He was the one who requested the sweat gland tests and TTT tests, which came back positive. He says that a lot of people have autonomic dysfunction that effects their gut. He Also said that GI problems may be responsible for some cases of autonomic dysfunction that don’t have known causes. he and other doctors at Johns Hopkins have preliminarily results that say something like 50% of their Dysautonomia patients have significantly reduced symptoms if they can treat the GI symptoms. He admitted that the sample size is too small to say anything conclusively. He also said that most of the patients in this group come into their practice with GI as their main complaint. He wasn’t trying to oversell their hypothesis.
  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 to be symptom free.
  16. @Jwarrior77 - I’m sorry you’re dealing with this. Do you have pain associated with either light or this oscillating dilation? Are your eyes dry? My eyes have definitely acted up recently. Eye changes can be scary. Sometimes I have light sensitivity that is very painful, after-images and oscillating dilation, I don’t get the purple flash symptom you describe. When my eyes “flare up” I also get halos and spindly rays around bright lights and blurry vision. Most of the time my vision is 20/20. Other times I can’t make out what’s on the TV. I have noticed that my eyes will act up more when they are dry. I don’t know if this is related or not. Using saline tears helps with the dry eyes, but it takes a while for the dysfunction to go away. Good luck. Please report back if you learn more.
  17. I used to think I just willed myself to not be ticklish. I was the youngest son and my family liked to tickle a lot. And I was very ticklish. It turns out that you don’t just stop being ticklish 100% without something happening. Apparently it’s a semi-involuntary response. You can control the response a bit, but if caught unawares, you’ll be ticklish. My wife, who has known me for half my life, has never been able to tickle me. She has caught me by surprise many times, and I don’t tickle. It just surprised me. She has tried when I was half or fully asleep. My net response was me rolling over. I vaguely remember what it was like to be ticklish. After the question a few weeks back about gag response, I thought I’d post this question: Is anyone else here not ticklish? Or has anyone else here lost their ticklishness?
  18. @Linz1501 - many of your symptoms sound very familiar to me. Most of us have slightly different dysautonomia symptoms, and they change over time. But your story is similar to mine and many others. I nearly failed my TTT. The doc didn’t want to diagnose me with POTS but the data showed that I have POTS. On different days my POTS is better or worse depending on a bunch of factors, including random chance. My POTS is related to small-fiber neuropathy. One of the few reliable lab tests for small-fiber related dysautonomia is sweat gland dysfunction. If large-gland neuropathy is suspected, then EMG (to test the speed of neuron transmission when shocked - I think) is the recommended test. My doc explained that one, the other or both neuropathies would lead to different treatments. If you go to a specialist, you’ll want the data. Specialists often take a long time to see, and many require proof of dysautonomia before they will see you. I’m sorry you’re going through this. It takes a while to figure this stuff out. Dinet helped me adjust, and helps me learn about myself.
  19. @Charlotte1 - I don’t know much about sleep. I’m still learning this stuff myself. I tried a CPAP, but it made my central sleep apnea worse. One of the common symptoms of CPAP is central sleep apnea. I got such bad episodes that my chest felt bruised for days. A friend suggested a bipap, but I haven’t gotten around to it. I know from my sleep doctor at Johns Hopkins that “In-home sleep studies aren’t appropriate for people like [me].” He was convinced he wouldn’t see what he needed to see without brain waves, leg monitors and all the rest. It turns out he was right because my local sleep doctor couldn’t make heads or tails of my full results. Several of the “sleep doctors” I’ve seen were basically glorified CPAP salesmen. I‘m now on a tricyclic, nortriptyline, which is a nerve pain medication and antidepressant. One of its many side effects is high heart rate. So I’m not having as many bradycardia episodes now. After months of titration go, I’m finally at a clinical dose. I do get worse central apnea events at high altitude, which suggests there is a low oxygen component to my episodes. to answer your other question, I’ve had the bradycardia/central events during daytime naps, and similar events when awake. This could be due to my narcolepsy, which I don’t understand yet. Dysautonomia isn’t just POTS. As many people have noted in this forum, we get many weird symptoms. If your doctor isn’t willing to work with you as a collaborator, I’d recommend looking for help elsewhere. I hope that is an option for you. I go to my local doctors for measurement because I live a mile above sea level (less oxygen makes a difference). But I take the data to doctors who understand more than Just obstructive sleep apnea. I hope you get some great results And great help.
  20. @Charlotte1 - I have very minor sleep apnea. My AHI is 5-7. central sleep apnea is what gets me. The obstructive sleep apnea isn’t bad. But sometimes, my system just say we’re going to stop breathing for a bit. My heart actually slows down to bradycardia. I wake up with my chest pounding, but not fast. It’s freaky. GERD is also a problem for me, but Mine is mostly controlled by Zantac, which was pulled from the stores on the USA. I mainly sleep on my sides though. my GERD and POTS get worse together many times. It’s all part of the nervous system malfunctioning. I also have narcolepsy and REM sleep movement disorder. So I can always fall asleep. I just don’t stay asleep.
  21. I take The whole B complex B1, B2, B6 and B12. It had Folic acid and other stuff that’s supposed to help. My homocysteine is a bit high despite taking these supplements. I bumped up my Bs by 10 times a few weeks ago. I’ve had a little more energy, and a little less pain since I’m also titrating up on nortriptyline and bumped up my Testosterone, so it could be anything or all the things.
  22. My sister in law just sent this to me. It’s nothing new to those of us here, but it’s easy to read for family and friends. https://www.usatoday.com/story/news/health/2019/11/19/dysautonomia-leaves-millions-undiagnosed-barely-functioning/4237075002/
  23. @AllRelative -sorry for the delay. Life! I went to Hopkins because I had some great connections there, and my doctors in Colorado weren’t as helpful as I would have hoped. They don’t have a Dysautonomia group, but they have an informal group of smart people that often work together on odd patients like me. I’m waiting to get an appointment at Vanderbilt.
  24. @Jwarrior77 - holly (#($. My gag reflex is almost non-existent. I stuck a spoon back there and waggled it around. I had almost no response. I did have little, maybe 5-10% of what it should have been. It was more like a slight tickle. It feels a little raw now, but that is it.
  25. @AllRelative - I have been seeing specialists at Johns Hopkins. I didn’t think I had sleep problems other than extremely mild apnea (5-7) and pots-related fatigue. The sleep doc said he was really interested in my brain waves, both awake and asleep. I think he knew he was going to find something. At this point, I only have the quick results ( analyzed by the Sleep tech and approved by the sleep doc). I hope I’ll have more info by the end of this week. We will see if he finds any additional insight. If he does, I’ll report back. I have no idea what Dysautonomia and Narcolepsy and REM sleep behavior disorder will look like to him.
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