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Knellie

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  • Gender
    Female
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    Utah, USA
  • Interests
    Sewing, Cello, Crochet, Reading, Music in general, Medical stuffs :)

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  1. Where I live, it has started getting really hot, which is killing me. I already have "chronic migraines" as they call it, but the heat is making it so much worse because of my dysautonomia (today it is 98 degrees and is getting hotter😓.) I have taken Tylenol almost everyday in the past two weeks, which I know is a horrible habit, so I am trying to find some other ways to make my headaches better. So far I have tried drinking ginger herbal tea (which only makes me hotter, so that doesn't work great), a neck massager to see if it is a neck headache (it apparently isn't, but my shoulders and neck were so painful during that I was almost screaming), and drinking lots of water. Nothing has worked so far, so I was wondering if y'all have any good suggestions for headache remedies that aren't painkillers? Thanks in advance!!
  2. @yogini - When your hands/feet turn white, do they get cold too? If they do you could have something called Raynaud's Phenomenon. It is very common with dysautonomia. I don't think there is a treatment, and I don't think that it is "disease" in and of itself, but I think it is a symptom of something else (dysautonomia). Here is an article on it if you want to check it out: https://www.hopkinsmedicine.org/health/conditions-and-diseases/raynauds-phenomenon#:~:text=Raynaud's phenomenon is a problem,%2C stress%2C or emotional upset. I hope this helps!
  3. @artluvr09 - That sounds like Pulsatile Tinnitus. This can be an indicator for high intracranial pressure. Have you had your eyes checked recently? Your optic nerve is a good way to tell if you have IIH. Your optic nerve could be swollen from the pressure (called papilledema). If you don't have papilledema, then you can still have IIH. I really like this facebook group for info on it: https://www.facebook.com/groups/198904797135988 Also, this doctor does a lot of work on this, and this is his website. His name is Dr. Athos Patsalides. Link: https://www.athospatsalidesmd.com/
  4. @Pistol - Thanks for your reply! I didn't know you could ask your doctor to do that. Any tips on how to bring it up to my doctor?
  5. @CallieAndToby22 - Ouch! That sounds so painful! I'm so sorry. Thank you for answering, its nice to know that I am not the only one who feels this way.
  6. I'm sorry, I just need to vent, so you don't have to reply to this post. Today I went to and ENT to discuss a possible CSF leak. I have had headaches for about three years, and on top of that all of my POTS symptoms. I recently started getting a metallic taste in my mouth and drainage through my nose. I have pressure headaches and the pressure goes up when I exercise or bend over. When I bend over I can't breathe through my nose very well and the ringing in my ears gets so loud that I can't hear very well. My eyesight has been getting way worse and my vision gets blurry when I exercise. I had heard from many people that CSF leaks can mimic POTS and someone on this forum even sent me a video of a doctor from Stanford talking about it. I went to the ENT today and he literally told me that I had a runny nose. Ya, thanks a lot genius. I am glad you went to medical school to label people "runny noses" and then give them nasal spray. I could tell that he thought I was making stuff up and just pulling random crap off of the internet. I can't fathom why someone who is supposed to be educated would literally think that I would waste my time and money to go around and make up symptoms. I am so tired of people telling me I'm crazy. Oh yes, because when I am on the couch barely able to move and crying from an awful migraine that is killing me while I still have to do school work and take care of life I am making it up for attention. I have no idea what to do because I don't have any doctor to go to who believes me. All the good POTS doctors in my state are booked wayyyyyy out or won't take new patients. And, I can't just go to another state because I don't have the money to pay for a stay like that and insurance won't cover it. I just wish that someone would listen. What am I supposed to do now? Thank you for reading this if you made it this far. I am just so frustrated😣
  7. My mom was on Cymbalta for a little bit and it made her feel awful. I think it can be different for everyone, but for her and a lot of other people it has been very bad. I think you have to figure out what is good for you, but that was our experience with it.
  8. @Ashc - I like Among Us, Puzzledom, and Wordscapes as far as games. For more educational things I like Khan Academy for learning pretty much anything (but especially medical things) and Coursera for courses for adults.
  9. I have exercise-induced asthma and I was on propranolol for a while and had no problem with it. It just did not help my POTS at all so I got off of it after about a month.
  10. I have heard mentioned on this forum many times people getting infusions monthly/weekly/every 2 weeks, etc. I was just wondering what these are for? Are they just electrolytes? And how would I get my doctor to prescribe that for me? Do you get them at an infusion place or do you have someone come to your house and do it for you?
  11. Oh my gosh yes! I mentioned this to my doctor but she didn't really seem to care. It really bothers me though. I can't stand silence anymore, I always have to have music or something or else it just rings horribly and gives me an even worse headache than the one I already have 😐
  12. Hey Everyone! Today I got diagnosed with non-ulcer dyspepsia (NUD) after an endoscopy, four biopsies, lots of blood tests, and of course lots of doctors. My doctor specifically said, "This does not mean that we think it is all in your head, and this is a real diagnosis." I think I believe him in the fact that he doesn't think I'm crazy, but the more I read up on this disorder, the more I feel like it is just a giant question mark. He said it was super common in dysautonomia patients, so if that is true I was hoping someone could shed some light on this for me. He is going to put me on a higher dose of Omeprazole (40mg). I am just worried that this won't work and then I'll be back at square one. I am really discouraged because if this doesn't improve my symptoms then I'll have yet another pain and more stigma to deal with. My question is, has the Omeprazole worked for anyone with NUD? If it hasn't, what alternative treatments have you tried for your NUD? I am just crossing my fingers and praying that this works for me. Thanks for reading through my ranting, and thanks in advance for your answers!!!!! +
  13. Hello All-- I was just wondering if any of you have tried MSM gel/powder for your dysautonomia? I have heard some people say that its helpful, but I am not sure how it would be for dysautonomia, and it is kind of expensive so I would like to have some opinions on it before I buy some. Thanks!
  14. @Aghast - I don't get slurred speech as much, but I do have trouble forming words sometimes. I also have a lot of problems with word recall and with thinking. And fatigue only makes it worse. If I could find something to help then I would tell you, but I haven't found anything so far.
  15. Hi Everyone! I just had a question about some good supplements to take for dysautonomia. I get really achy legs and they get crampy, and I have heard this is a magnesium deficiency. So I take about 750 mg grams of magnesium a night, but I still don't get the crampy achy feeling taken away. My Mom suggested I eat more potassium, so I'll try that. But I just wanted to know what you guys take to help with pain, immune system, digestion, etc. Thanks!
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