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  1. Today
  2. Thank you all so much for your thoughts on this. It's truly appreciated. It's been hard to help her because I'm living at a distance, but like so many of you...I remember a little too clearly what it was like to be in that state of not knowing what's going on. It breaks my heart still and makes me angry hearing what all of you had to go through with this, and to see her going through something similar. Seriously, thank you for your kindness and taking the time to share your thoughts...it means so much.
  3. Yesterday
  4. I have MCAS and allergies definitely seem to worsen it for me I imagine the allergies ramp up the immune system in a way that makes the MCAS worse Or maybe MCAS predisposes you to more serious allergies and more unusual responses to them
  5. Last week
  6. This happens to me fairly often, but not as frequent as some of my worst symptoms. Recently, I was driving (a short distance thankfully) and noticed I had trouble holding my arms up to keep them on the wheel. It's a bit strange though because for me it can come out of nowhere and last all day or could dissipate in an hour. There's usually a deep burning ache that goes with it. What's really strange though is when it does go disappear rather quickly, it's generally after something interesting genuinely distracts me, which makes me wonder about some of those brain rewiring theories. It has to be an organic distraction though. I can't force myself into it. Doesn't always work, it's sometimes temporary and usually doesn't work as well for other symptoms, but strange. I guess maybe one of the reasons is that as uncomfortable as it is, it generally isn't one of my scarier symptoms.
  7. I would guess it's something in the environment that time of year that triggers the MCAS in a certain way? Thankfully, this particular time, it seems to be receding before it gets too bad. Still going to stay on the MCAS trail in an attempt to prevent future outbreaks.
  8. @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.
  9. Hi there Random-Symptom Man. It sounds to me that you are not controlled with medication. Are you seeing an autonomic specialist?
  10. 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.
  11. Yes. It turned out in addition to all this mess, I had pernicious anemia. It would take all of my energy to walk from the couch to the kitchen table (20 ft). After that I just wanted to collapse and sleep instead of eat. It was a very bad time in my life. Hopefully they do full blood counts and notice what is going on. I went for years with untreated pernicious anemia even though it was clearly in my bloodwork. Low blood pressure is also very exhausting as is tachycardia. When my resting HR was in the 120s, I was too tired to do anything. Keep talking to your doctors. It can get better.
  12. Yes I have felt this way. Drinking more fluids and salt and ideally eating or drinking something rich in potassium helps me.
  13. Anyone else get so exhausted that it feels like theyre using all their energy to breathe normally?
  14. Thanks for this good basic recipe - you are right, so much easier on the stomach, I think, than sure salt tablets, as it's diluted. Hope they bring the Zantac back soon!
  15. 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.
  16. @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.
  17. Also, can I ask what electrolyte drink you use that you can tolerate with the GI issues? TY.
  18. I’d rather use nicotine than any of the poison doctors have to offer honestly
  19. Yes...I stopped using nicotine patches and got dizzy every time I stood. Seriously think using them was masking this for years...
  20. I guess my question is would MCAS cause seasonal rashes? I don't know too much about it, but thought it was something that was year round.
  21. Thanks - yes, too bad the Zantac was withdrawn if that was controlling things for you. Hopefully they will bring it back or maybe you can switch to another H2? I'm surprised if you never had to use a PPI? I've read that the H2 blockers become ineffective after a few weeks? Maybe you took it just during flares? Appreciate your insight.
  22. These particular rashes...yes. As early as August to as late as Thanksgiving. Of the six or seven years this has been happening now, both the earliest and latest instances occurred last year. This is the latest in the year I've had my first rash, so perhaps that's good news.
  23. That's the thing I can't do. Travel. I'm in a situation where if I can't drive, I'm not getting there, which hardly even matters because it will probably require going out of state, which my insurance won't cover. I thank you for the responses and certainly will pursue this direction as far as I can though.
  24. @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...
  25. I agree with this but would take it one step further. On websites like WebMd they have a symptom checker where you enter in your info. They can guess what you have from a combo of symptoms. It may or may not be in the right direction but it gets you thinking. I would also read about the particular steroid she was given, the side effects from stopping it and from stopping steroids generally. The best thing that patients can do for themselves is to be extremely informed and take of their own health and not wait for doctors to. Your friend is very lucky to have you. You can assist her, but ideally she or someone in her immediate family could do this. I am saying this only because a friend tried to help me when I was first sick and totally guided me in the wrong direction - not on purpose, but because she didn't quite understand what was happening to me. At the same time my parents were looking into it, and they figured it out fairly quickly because they experienced with me first hand.
  26. You friend has probably already done this but I finally got my diagnosis after handing a list of every symptom I had written down as they happened over a period of time. I have read in some medical articles that sometimes a list can really help the Dr to make connections and it can be that the symptom that seems insignificant to the patient that steers them in the right direction. Personally I would not have remembered every thing that was going on too much brain fog . I do agree with Pistol having another person with you makes all the difference for support and my experience has been my husband has been asked many questions about his perspective of my health, sometimes that validation made me feel more confident I would not be labelled a hypochondriac as I had been for years when I was single. My heart goes out to your friend it’s awful not understanding what is happening to your health, I hope she gets to the bottom of it soon . She is fortunate to have you as a friend !
  27. Thank you for this insight, Random! I agree. Since I've been in a severe stomach flare, POTS symptoms/weakness are much worse. Even increases palpitations and dizziness, just a continuous cycle. Can I ask how you treat your GERD? TY,.
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