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Knellie

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About Knellie

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  1. I have something similar, but not quite what you are talking about. My neck and shoulders will sound and feel like they are creaking like some old hinges or something. It is painful and I usually have to crack my neck after to relieve it. It's weird. I am curious that a lot of you guys know exactly what she is talking about. Good luck trying to figure it out
  2. @Hippopotsamus - I get this weird thing where if I flip over in bed or if I get scared or I stand up and then lie back down when I feel really tired or am half-asleep then it feels like my body is vibrating and sometimes it feels like there is an earthquake going on. I haven't found anything helpful for it. Hope it gets better for you!
  3. I am not on anything for my dysautonomia. I am on omeprazole, but I don't take it super often because it doesn't help that much. I was on Propranolol for a while but it didn't help so I stopped taking it. I was also on Topamax for a little bit for migraines but it actually ended up making everything worse. I was also on Amitriptyline for migraines and it also didn't help but just made me really tired. What beta blocker are you taking? I will ask my doctor about it.
  4. When I wake up I get blue dots in my eyes and feel really dizzy like I am going to pass out. I am not sure if that is the same thing as you. I have chronic migraine so I always have floaters and dots in my vision and I commonly see weird colors, so it is hard to differentiate that.
  5. When you talk about eating liquid foods, what do you mean? Is that like protein shakes or soups or do you just blend up meal and drink them? Also, does your gastropariesis affect how much water you can drink?
  6. @POTSAly -I am so sorry you haven't been feeling well! That sounds so much like my symptoms! I have been trying to figure out if I have Intracranial Hypertension headaches. I also had an MRI that came out normal and when I bend down it feels like a giant rock rolls to the front of my head and makes it hard to breathe through my nose. I get bouts of vertigo as well. I have headaches 24/7 and have been diagnosed with chronic migraines. I would advise you to find a doctor who is willing to listen to what you have to say. You should look into CSF leaks. That could be causing your symptoms. CSF lea
  7. I have been having a lot of GI issues lately - bloating, indigestion, heartburn, nausea, abdominal tenderness, etc. I told my doctor about how a lot of people with dysautonomia have gastropariesis and he thinks that I could have that as well. But if I got diagnosed with that, is there any treatment? I am already on a PPI as of right now, but it doesn't help a lot. Also who would diagnose that? Would that just be a Gastroenterologist? Thanks in advance
  8. @Pistol - You mentioned that you got IV fluids weekly. Was that something your doctor had to order? I think that may be beneficial for me but I don't think that I would be able to convince my doctor.
  9. My sister had COVID and I was locked in a house with her for fourteen days. I tested negative, but I was coughing a little bit and had a small fever, but nothing crazy. Other than that I felt about as bad as normal.
  10. I prefer cold weather for my POTS, but I have always liked summer because I can be outside. Now I cannot handle the heat.
  11. My dream holiday would be at my grandma's house with good food, good friends, and family. I would also want my cat there, so that I could but bows on her head!
  12. @Jwarrior77 - Those symptoms sound pretty similar to mine. How would I go about getting diagnosed with that? What test do I have to have? What kind of doctor diagnoses that?
  13. @Jwarrior77- You have intracranial Hypertension headaches? I have been trying to figure out if I have that. If you don't mind me asking, what are your symptoms?
  14. @Pistol - It is weird, because for years I have had the symptoms, but not clinical tachycardia. My heartrate would go up, but not enough for it to be ruled POTS. These episodes have started in the past few months, along with several GI problems. Is it normal for these symptoms to come on randomly? I haven't had any major infections lately, so that wouldn't add to symptoms. Maybe it is progressing or something. I did increase salt and wear compression socks/leggings for a while, but it didn't help. Maybe now that new symptoms are coming up they would be helpful. Have you heard of o
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