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Everything posted by Knellie

  1. 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 😐
  2. 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
  3. 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!
  4. @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.
  5. 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!
  6. @KiminOrlando - Thank you so much!! I will definitely read through those!!!
  7. Hey Everyone! I just have a question for all of you with Mast Cell Activation Syndrome. You see, I have had eczema, "asthma" (not sure what it actually is, but that is what the docs call it. Albuterol doesn't help and when I have an "asthma attack" it feels like my throat is closing up and my throat burns. Who knows really?), I get stuffy noses often, and my doc thinks I might have eosinophilic esophagitis. I am not sure if these are MCAS symptoms. They seem like an allergic reaction to me but I really don't know much about MCAS. On top of that is of course the dizziness, headaches, ta
  8. @Sarah Tee - Thanks so much for the article. I really related to it. @Zach Martin - My doctor too recommended me doing Botox, but I wanted her to first test me for ICP. I hope Botox works well for you. I was worried about doing it myself because I didn't want it to throw me into a flare. I hope that we both find some answers soon, because it is infuriating to live like this.
  9. Hello again- As you all know, when you are diagnosed with POTS, your doctor tells you to do salt and fluid loading, but especially the fluids. I did the fluids for 4 months, drinking 96-120 ounces of water a day as directed by my doctor. I noticed in those four months that I got more frequent and severe migraine attacks. When I started drinking less water, I didn't get as many bad headache attacks. Now I barely drink any water at all, which I know isn't healthy, but it is what it is. I was wondering why this was happening? Most POTS patients feel better when they drink more water. Doe
  10. Hey Everyone- I had a quick question. I have had palpitations for about a year, as is common with Dysautonomia. At the beginning of the year I had an EKG and a Holter monitor done, just to make sure that nothing was seriously wrong. My doctor diagnosed me with Premature Ventricular Contractions, but said that it was fairly normal and didn't think much of it. My Holter monitor results said that I had 1164 premature beats in 24 hours, which seemed like a lot to me but I guess wasn't a big deal. I was just wondering if any of you have specific diagnoses for your palpitations? I feel lik
  11. @Alicat_326 - Wow, that sounds just like me!! I have super painful periods as well, although pain killers usually help. I too have the problem with my stomach hating everything I put in it. I never vomit but I get nauseous, bloated, stomach cramps, heartburn, indigestion, and regurgitation. I am actually getting an endoscopy in a couple of weeks for that very problem. I don't know if it is connected to my dysautonomia, but it did start around the same time so I would say probably. I haven't found anything to help other than some OTC antacids for the regurg and the heartburn/indigestion. Good l
  12. When I have panic attacks or a day with a lot of anxiety I also get a lot of neck pain. It may be a tension headache or it could be that you tense up your neck muscles. Breathing exercises may help with stress or these herbal remedies I like to take. I am not sure if either of those things would work for you, but I know that when I am stressed on top of all my POTS symptoms, it is definitely good to get rid of the stress you have. But don't rule out the possibility of the high BP I think that is a good hypothesis. Good luck
  13. @Pistol - Thanks for responding! I have not been diagnosed with small fiber neuropathy....who would diagnose that? Would it be a rhuematologist or a neurologist? Or could my GP just do it? Any tips on how to ask my doc about it?
  14. Hey Everyone- I had a quick question. I broke my toe almost three weeks ago. The doctor told me that the sharp pain should go away in about two weeks but the pain in my toe is still really bad. I did put it in a real shoe for one day but I wore an orthopedic shoe all the other days. I also have a scar on my big toe from like six moths ago that hasn't healed and still hurts from when I sliced myself on a rock at the beach and I have a scratch on my other little toe that hasn't healed all the way and it has been like 2 months. I was thinking that since we have such wonky blood flow to ou
  15. Hi @TorturedSoul - I found these articles that might be helpful for you and your doctor. I think the third paragraph in the "Cardiovascular Reflexes" section will be the most helpful when you are reading through the first link. Good Luck! Link 1: https://www.ncbi.nlm.nih.gov/books/NBK402/ Link 2: https://www.vumc.org/adc/38918
  16. Hey everyone- I keep having abnormally painful hunger pains, like every muscle in my stomach is cramping uncontrollably at the same time. That is the best way I know how to describe them. I mentioned it to my gastroenterologist but he wants to do an endoscopy to explore some possibilities. I was think that since we all have dysautonomia, which is a nerve problem, that maybe my dysautonomia may be causing it. Does anyone else experience this? Or is this just some symptom of all of my gastric problems? Also, my gastro thinks that I may have eosinophilic esophagitis because of m
  17. I agree with the safe and proven exercise methods. I would also like to know some good POTS flare ups remedies/things to make them more tolerable.
  18. Hey Everyone! A couple of days ago I broke my toe. It wasn't a big deal but the toe itself was of course swollen. When I stand up normally, my feet get really swollen, purple and cold, as is normal for POTS. But now my left foot (the one with the broken toe) is extra cold and swollen. When I stand up my right foot won't look that bad but my left foot will immediately swell and turn purple. When I sit down to elevate it, my foot won't get warmer, in fact it gets a lot colder. My foot keeps getting so cold to the point where my foot gets stiff and loses some feeling. It doesn't look swol
  19. Hi @angelloz - I am so sorry that you are feeling this way! That is the worst. I don't have a dry cough all the time but I do have a wet cough all the time, and the gunk gets lodged in my throat. It drives me nuts. I used to have a dry cough like that but my coughs are mainly wet now. I think that the chemicals in the masks we have to wear for COVID are bothering my lungs. I have heard a lot of people mention air hunger with dysautonomia, but I haven't experienced that myself. Do you have palpitations while you experience these breathing issues/cough? Sometimes my palpitations make me short of
  20. Hi Everyone! For the past couple of years, I will get random smells coming in my nose that don't make sense with the environment I am in. I will smell smoke when there is no fire, or a strong smell of food when there is nothing cooking. It comes at random times, not just on bad days. It doesn't bother me a lot, but I was wondering if this is something that only I get. I am wondering if it is related to my migraines. Do any of you get it too?
  21. Hi @Hippopotsamus - I use Ginger herbal tea which helps with headaches and stomachaches. It always warms me up and it has no caffeine in it.
  22. I love to crochet! I have been crocheting for like 3 years. I would recommend with starting out with single crochet and working up from there. I like a g or h sized hook. I find all my free patterns on pinterest or spruce crafts. If you have any questions I would be happy to answer them. Here is a link to some good beginner patterns: https://www.thesprucecrafts.com/free-crochet-patterns-for-beginners-978084
  23. Hi! Welcome to the forum! I am so sorry that you have been feeling bad lately! I am not sure how helpful I will be, but I will try! I also wake up extremely tired, even more so than when I go to bed. I have found nothing to make that better, but I can tell you what makes it worse. I was on Amitriptyline for a little bit because my doc thought that it might help my migraines and it just made it so hard to get up in the morning and made me more anxious. I don't know if it is like that for everyone, but that was my experience with that drug. Also I found that if I sleep over about 8 or 9
  24. @Pistol - Can you tell me the name of your rowing machine? I might buy one of those. Also, for all of you who say to cut out soda, do you think that diet sodas (like Coke zero or diet Coke) still hurt you or do you think those are okay?
  25. Hey everyone- I hate to admit it, but in the 2 and a half years since I have had POTS I have gained somewhere around fifty pounds. I really want to lose weight but I don't know what to do, and hard core exercise makes me really sick. Do you guys have any advice about this? It is really frustrating. Thanks in advance!
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