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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. @Pistol Short answer: I am not yet controlled, but trying to get there. Long answer: I've been seeing doctors at John's Hopkins. They got me to a diagnosis pretty quickly after others floundered, so I'm grateful for that. John's Hopkins has people that work on dysautonomia, but they aren't exactly dysautonomia specialists like at Vanderbuilt and Stanford. I started the application process for Vanderbuilt, but that takes a while. I actually saw a specialist here in Colorado shortly after my symptoms forced me to quit my job. Surprisingly she didn't think I had dysautonomia and misdiagnosed me with MCAS (her other focus). She was absolutely positive I had MCAS and not dysautonomia. Yet, multiple tests came back negative for MCAS. I went elsewhere for POTS and sweatgland tests. I knew someone at John's Hopkins, so I went there. I tested positive for POTS and sweat gland dysfunction. Given my other random dysfunctions (ed, gastric, light sensitivity, and more) this diagnosis makes much more sense. I'm reluctant to go back to that local specialist now. Until I get in with a better specialist, I'm going with John's Hopkins advice. I am ramping up on Nortryptoline, which is part the problem. Every time I bump up my dosage, I get a rash of symptoms. This last week it was high HR again. Another time it was light sensitivity and bladder dysfunction (FUN!). Every time, my hands spasm and shake. I've had all sorts of symptoms spike because of it. While the symptoms often seem random, the uptick in symptoms with an increased dosage seems consistent. After I stay at a particular level for a week or two, my symptoms settle down. Next week I'll go to 50mg, and stay there for a while. On a positive note, my brain is working a bit better (when I'm not exhausted). I searched DINET for 'Nortryptoline' and only a few people here have experience with it. Everyone said it was horrible to titrate up on. Most people don't seem to stick with it.
  2. When I have a day with 7+ hours of high heart rate, it is exhausting. Just opening my eyes can be a struggle. I had 14 hr high-heart-rate day last week. I took a shower in the morning, and my HR went to 163 bpm. It didn't consistently come down below 100 bpm until after midnight. For reference, my resting HR is usually 63-79 bpm. I was so tired, but I couldn't sleep because my HR was high. It took a few days for me to feel rested again.
  3. Oh, I forgot to mention, actual sugar in those quantities tends to give me heartburn. I keep a water bottle with salt and splenda in it next to me day and night. This way I have fewer fluctuations in salt intake. I find that quick variations in salt intake gives me headaches.
  4. @Amyschi - I started taking Zantac once in a while when I'd feel heart burn. I later noticed that I slept better on nights after I took Zantac. I ran some experiments, and it turned out that I sleep better after I've taken Zantac. So now I take it every night. On nights where I've forgotten, I don't sleep as well. This is common for "Silent" GERD. From https://rehydrate.org/solutions/homemade.htm: ```Give the child a drink made with 6 level teaspoons of sugar and 1/2 level teaspoon of salt dissolved in 1 litre of clean water. Be very careful to mix the correct amounts. Too much sugar can make the diarrhoea worse. Too much salt can be extremely harmful to the child. Making the mixture a little too diluted (with more than 1 litre of clean water) is not harmful.``` I use one packet of Splenda rather than 6 level teaspoons of sugar. I am trying to manage my weight. I've used Aspartame a few times, but prefer Splenda for some reason. I've bumped the salt up to 1 teaspoon before. I like this better than the salt tablet because it goes in slower and it goes in along with H2O, so I don't need to worry about balancing my hydration as much.
  5. @Amyschi - I treat my GERD with Zantac (though the US recently pulled it from shelves - I have some stalked up) and TUMS. I also avoid things that make it worse, like eating sugary or spicy foods, eating large portions, consuming alcohol and not sleeping enough. Also, keeping a tight lid on my allergies with H1 and H2 blockers, and nasal sprays helps a lot. I also stopped taking salt tablets because I noticed they caused GERD. I replaced salt tablets with a salty water drink recommended for hydration by the WHO and one of my doctors. I replace the real sugar with fake sugar. Nevertheless, I can get a spike in GERD if I let myself get stressed, if I stand up too quickly once, or if any number of other things happen. I know how to make it less bad. I don't know how to keep it from happening...
  6. My psychiatrist releases info to my PCP regarding any medication changes. They have discussed meds between them. I like this, as my PCP is really good with drug interactions. My Cognitive Behavioral Therapist can not share anything unless it is life threatening.
  7. I prefer advil. It tends to help me with swelling too. Plus, while Asperin lowers my blood pressure, advil/ibuprofen raises my blood pressure, which is what helps me. But I read that continual use of advil/ibuprofen is bad for the heart and kidneys, so I try to limit its use. Do you know what type of headache you get? Where do they hurt? Everywhere? Temples? Base of spine? Behind the nose? There are a ton of possible causes of headaches. Are they continual, or do they happen at certain times of the day?
  8. +1 to the concept that it's all related. For me, dysautonomia seems like random set of interconnected symptoms, including my GI. Here are just a some of the ways they seem interconnected for me: 1) I can see a bright light and then have immediate gastric emptying. 2) My GERD at night often increases my sleeping heart rate and then makes my POTS way worse for the rest of the day. 4) High HR often leads to tinnitus, nerve pain and brain fog. 5) Eating a medium to large meal makes my POTS and presyncope way worse. 6) Stress makes my hands shake and spasm and often leads to gastric emptying.
  9. I'm doing okay today, but the last few days kinda sucked. My light sensitivity hit a new high. I spent most of my time in the dark. I couldn't look at a screen without two pairs of glasses on - which then makes it hard to see. My hands hurt and shook. My brain fog was horrible. My ears rang like crazy. Oh yeah, and I still have pots. Oh, and my bladder ached. It was all really bad two days ago, and yesterday was a bit better. I'm nearly back to normal-ish now. What do you do when you can't do much? When you can't look at much? When you can't manipulate your hands? When your brain doesn't work? When that annoying ringing in your ear just won't stop? I listened to audibles, but got bored and annoyed. I listened to a few movies I'd already seen, but got bored and annoyed. I napped a bit. I tried a shape-based puzzle, but got frustrated with my hands. I've become so reliant on my computer and phone as portals to the outside world, that when I can't see, it drives me bonkers. I'm sure this will happen again, so I'd really like advice on what to do next time my light sensitivity strikes.
  10. @Clueingforlooks - Good luck on your gastric emptying study. My study showed nothing. For some reason my body refused to do it's usual shenanigans. I didn't have any bowel issues for four days straight. It was the longest I've gone without issues in a year. Now that I think about it, I should sign up for a Gastric Emptying test every day if that's all it takes for my GI to behave.
  11. That sucks! I've had to cancel in the middle of a doctors' visit. I spent about a half hour in the bathroom. When the autonomic nervous system says you gotta go... It is so frustrating! Can you put it on your credit card? If you have to cancel, get the credit card company to dispute it for you. It would probably be a hassle. You'd probably have to send the CC company your docs showing that you have a disability. Why is it always so hard?
  12. Hi @MissMermaid. Welcome. You are definitely not alone in dealing with GI issues. I'm glad you're going to see a GI specialist. Many of us on this forum have autonomic dysfunction of the upper and/or lower GI. While some people here have issues with certain types of food, others like me have GI issues no matter what type of foods we eat. After extensive testing, and scoping, and prodding and poking they couldn't find anything wrong with my GI other than minimal evidence of acid reflux. I don't have any food allergies that could be found. I kept a food journal for over a year, writing down everything I ate. I tried every kind of diet. Nothing helps me except eating smaller portions, limiting sugars a bit, hydrating like crazy and Zantac. Unfortunately, Zantac was just pulled from the shelves in the US. If your GI specialist rules everything else out, then dysautonomia may be the culprit.
  13. @DizzyPopcorn - I have tried CBD in both tablet and oil form. Note: Before I continue, CBD and THC are illegal in many places. I checked that CBD is legal where I am at the city, county, state and federal levels. There are only 2 manufacturers in the US that make 100% pure CBD (and water). The rest have at least small amounts of THC. THC is currently illegal at the Federal level in the US. Also, when I researched CBD for medical use, it appears that it isn't well regulated, and is often mixed with a variety of things, which may not be good for you. When one of my doctors thought I had MCAS, she said that some patients get relief from CBD tablets. She mentioned a pretty pure brand here in Colorado, that her patients swore by. She was very careful to never suggest I take it, but skirted the line by saying how other patients had gotten some relief from CBD. It was later determined that I don't have MCAS, but I had already tried it. I took dissolvable micro-dose tablets. Those tablets were made by a reputable manufacturer, and were said to be dosed very precisely. I was told that drops were harder to get an exact dose for. Some drops are twice the size as the next. The effect of the CBD was temporary for me. I felt numb and warm for a few hours. It was great for when I ached. It really took the edge off. Sometimes, I also get pain where it feels like my leg or arm is on fire. I think it is nerve pain. I have a CBD and vegetable oil based cream that helps with this. It reduces the pain. These flareups last a few hours, and the numbness is a huge relief. I sometimes have to re-apply because it wears off after an hour to two hours. If I don't wear a glove, my hand will get a little numb too. Both of my hands get achy/shaky/ridged/weak/numb - especially my dominant hand. Sometimes they cramp up too. I've tried the CBD cream on my hands for temporary relief. They feel numb/warm for about an an hour and a half. The achy feeling goes away. It really helps the rigidness of my dominant hand. But then the symptoms return and it still feels numb for a while. So then my hand is practically useless. I pretty much only use the cream if I need to use my hands a lot or the pain/cramping is really bad.
  14. @Anne77 Welcome, and sorry to hear you are having symptoms. Could your nocturnal tachycardia be a side effect of medicine? I struggle with brachy or tachy on different medicines.
  15. That is great @bombsh3ll. And a helpful lesson to the rest of us. Persistence!
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