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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. 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?
  2. @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.
  3. @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.
  4. @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.
  5. 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.
  6. 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/
  7. @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.
  8. @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.
  9. @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.
  10. @Jwarrior77 - thanks for the tips. I’ll look into those suggestions. to answer your question, the narcolepsy is in between. I do fall asleep easily at night. I also get these instances where I ”hit an energy wall” or “run out of energy” or “crash”. It doesn’t happen every day, but many. I used to think it might be sugar related, but ruled that out. Then I just thought it was a natural part of fatigue. When I got my POTS diagnosis, I thought it confirmed my mistaken belief it was fatigue. I have fatigue too, but apparently this is different. The best way I can describe it is like a 100 pound blanket of tiredness is thrown over my body. It is hard to do anything but sleep. I can fight the urge to sleep, but it takes willpower, pinching myself, flexing muscles and stuff like that. It sets in over minutes, not seconds. its not like the movies. I don’t worry about driving because I can focus and pull over. After struggling for a bit to stay awake, I can do things that will wake me back up. The late afternoon is the most common time for it to set in. But it can happen at any time. I fall asleep in action movies. I fall asleep at dinner time. I try to maintain good sleep hygiene, but it’s difficult. As I said before, I thought it was just fatigue. Apparently, it is both fatigue and narcoleptic sleepiness.
  11. @Miraclemaker11 - welcome, and I’m sorry your family is struggling with this. I don’t have experience with those medications or autism, so I can’t comment on those. Sorry. I can say I’ve had a harder time handling anger since my body started to revolt. For me, it often feels like I’m trapped in an Iron Maiden. I can’t do anything. If I feel well enough to try, my illness either causes a weird symptom, knocks me out, or just plain hurts. The most frustrating part is when my brain and body revolt at the same time. I’ve wanted to smash a doctor’s office recently. Fortunately, I refrained. Sometimes my crappy autonomic nervous system crossed signals and wants to jump towards fight. When this happens, it takes a lot of will to let even little things go. I can imagine that autism would make controlling this impulse much harder. I’ve assumed it was an adrenaline surge, but I really don’t know. I get either shaky/jittery or I “crash” after I get one of these impulses. Does this happen to your sun? It feels a lot like narrowly avoiding an accident. That’s why I assumed it was adrenaline.
  12. So, I’ve just been getting used to a diagnosis. I now have 2 new diagnoses on top of Dysautonomia. 1) Narcolepsy (I can fall asleep quickly and get into REM sleep quickly) . 2) REM Sleep Without Atonia (I move my arms and legs during REM sleep and normal sleep when I shouldn’t). It looks like I’ve had some symptoms of Dysautonomia and Narcolepsy my whole life, but everything has jumped to a new level. It looks like I’ve had low-level neuropathy for decades, but it has increased in recent years. I have no idea if one symptom caused the others or if there is something else waiting to be found. I don’t know what to think about these new diagnoses. I don’t see my specialists for 2 more months. If anyone has experience with best practices for these co-morbidities, I would really appreciate any insight you can provide. thanks
  13. @AllRelative - have you done a sleep study? Specifically a polysomnography and MSLT? The reason I bring this up is your comment of suddenly getting tired. I just found out that some drops in my HR are due to narcolepsy. To my surprise, I just found out that I am narcoleptic. Nobody that knows me would have ever suspected it. I always thought of narcolepsy as something where you just fall asleep suddenly. Apparently there are two different types of narcolepsy and gradations of severity. It is diagnosed by how fast you fall asleep, and how fast you get to REM sleep. Apparently, I have both fatigue and narcolepsy. #RandomSymtopmMan! HR, BP and O2 can drop and rise during sleep for most people. Apparently, it can drop early in me - when I get sleepy. My hr doesn’t drop as severely as what you show, but it’s significant.
  14. @chronic-tea - I’m right there with you. I only had a 30bpm increase for my TTT. In the cool like a hospital, I do better. If I heat up at all, I land in blackout city. The pulmonologist didn’t want to diagnose me with POTS, but did because the data was there. Because I’m a male in my 40s, he thought I couldn’t have POTS. Dysautonomia is infuriatingly consistent about being erratic in the most frustrating ways. You are absolutely right; getting a diagnosis is a big thing. For me it is not just for dealing with the system, but also for “peace of mind” after being told “it’s all in your head.” We all hope it all comes together for you. And I agree that small-fiber neuropathy can be linked with dysautonomia. I have small-fiber neuropathy and dysautonomia (pots, dry mouth, dry eyes, sweat gland dysfunction, eye dilation issues, gut issues, and the list goes on) and fatigue. Tons of people on this forum, including me, suffer from nerve pain, fatigue and dysautonomia. good luck.
  15. @AllRelative I used to be a professor, so pardon me if I’m pedantic. This is a common issue in all of science, engineering, and medicine. It is often hard to tell the difference between errors from faulty measurements and real data from a accurate outliers. Most automated systems disregard both. One way to tell the difference is to see if the result is repeatable. Can you get the same result again? This can be challenging - especially if it is a rare event. Another way to tell the difference is redundant measurements. If you have multiple devices measure the same outlier, then it is less likely instrumentation error. If only one records anomalous data, it’s likely a faulty measurement. Of course it can still be an effect of a non-related phenomenon if measured multiple times. I have no idea if this helps.
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