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Darlene

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Everything posted by Darlene

  1. i get the burning sensations in my arms, chest, back... grubb doesn't know what it is. my neurologist thinks it's anxiety. if it is, its not mentally induced, it's secondary to dysautonomia or the cause they just havent found yet. i have wondered about lyme.
  2. i was dx with dysautonomia in 2005. stimulants such as caffeine, aspartate from aspartame sweeteners, and glutamate from MSG send me to the ER. sometimes i get this systemic burning sensation throughout my body, i wonder if this could be from the excitatory neurons. i have anxiety and panic attacks (not mentally induced). i was put on klonopin, but 1st link potluck posted says klonopin makes things worse. i wonder what i can do to calm my nervous system? the site also talks about low blood sugar. my dr. has checked this and it's ok, but when i get certain episodes i check my sugar and its low (60's). when my sugar gets below 72 i feel funny. so, how can my blood tests show i don't have diabetes but my glucose meter at home says other wise. my grandpa has sugar. so, it looks like i should quit klonopin (only took it once in a blue moon anyway) and quit vicodin for back pain. i take lexapro and metoprolol which helps with tachycardia and calming the nervous system, hopefully these are not bad drugs to take. but sometimes when my meds are not enough, i wonder what can i take to keep that burning away (adrenaline surge maybe?) i hate having this condition... not only do i hate being sick, i hate that the symptoms are scary... and i am afraid to be alone or drive by myself because of this stuff. i also hate when i feel funny, like my body is trying to correct a dysfuntion.
  3. my nurse practitioner at the health dept. said mirena or endometrial ablation would be good, i m just not sure what i want to do. misstraci, i was dx with POTS when im 2005, at the time i was put on lexapro, metoprolol, and ortho novum (birth control). i went to the ER one night and he told me to quit taking the birth control, and prescribed me to take plavix for 3 or 4 days. i went to the ER because of severe POTS symptoms. i was about 34/35 i think at the time. other dr.'s have even asked me, why would he do that. i did have a positive d dimer 6 months ago, which is a blood test that indicated blood clot. i had a nuclear scan of my heart, and lung, but no blood clot there. so because of the positive d dimer i do worry about taking birth control, but i can't keep having these awful periods. i m 39 now, not sure if they change when you get older but for the past 2 years i ve been bleeding more than i ever have. i also have a cyst on my left ovary that hurts. wonder if the cyst can be removed without general surgery.
  4. what is the safest birth control for pots: one that doesn't cause weight gain, blood clots, etc. or maybe endometrial ablation... anyone have this done? iv or local sedation is ok, do not want general surgery (don't feel healthy enough for that). is novasure the same as endometrial ablation?
  5. my bp before dx was 90's over 50's, i was given lexapro to help higher my bp, and to help me from feeling like i was always going to pass out. i was given metoprolol for tachycardia. what made me worse was snri's, i think it was the norepinephrine. certain foods make we worse like alcohol, foods that contain msg's or fake sugar, too much caffeine, pickles, yogurt, sausage, bananas, cheese... and i can't remember the other foods this minute. do little activity like just sweeping out my car, high humidity days or really hot days make me worse
  6. just a little makes me feel horribly ill too, and makes me heart be really fast.
  7. i watched the episode where he passed out. when he went to the er they said it was from pneumonia and pancreatitis. i believe he has sugar too.
  8. i have a disability hearing coming up in a few months, any advice would be greatly appreciated
  9. does the burning feel like it is on the inside, if so, i get this, but when i ask a dr, they don't know
  10. i have positive ana and histone, doesnt think i have lupus even though i am in pain 24/7, said my dr. should recheck it every year
  11. i was dx with mild polyneuroptahy recently, right side of body... does anyone else have this? did you find the cause? and what treatments are you on? i looked up polyneuropathy and it wasnt good. just want to keep the nerve damage from getting worse.
  12. i was dx with mild polyneuroptahy recently, right side of body... does anyone else have this? did you find the cause? and what treatments are you on? i looked up polyneuropathy and it wasnt good. just want to keep the nerve damage from getting worse.
  13. i have tried just about every ssri, lexapro is the only one i can tolerate, i had low bp at the time of diagnosis, lexapro help raised my bp, before lexapro i felt like i was going to pass out 24/7.......
  14. i have tachycardia, especially when sleeping. i take metoprolol twice a day
  15. the yellow dye in rantidine gives me diarrhea. i now take famotadine 40 mg.
  16. grubb put me on it also. at times i experience burning sensations inside my body.... when i took cerefolin, it would trigger the burning sensations... so, i quit taking it. then my neurologist put me on b complex recently, and b complex makes me feel sedated... maybe its not cerefolin or b complex causing my symptoms, maybe its the disease itself
  17. i have had pain on the left side for several years now. its annoying. i have had a cat scan, which showed nothing. wonder if its my bowl or intestinal tract. anyone else have left side pain?
  18. sometimes my last 2 fingers go numb or my first 2...
  19. yes, depersonalization is what it feels like. feels like i m not getting enough oxygen to my brain. i m not going to be able to work because of it. i applied for ssi may 2012. how do i explain this symptoms as 1 of the reasons i will not be able to work? i just say i feel funny, but i am sure there is better wording.
  20. electrolyte deficiency? i have the same problem. had an emg recently which shows mild polyneuropathy. not sure if that causes muscle twitching or not.
  21. is there a difference between peripheral neuropathy and polyneuropathy?
  22. the only time i had been alone when i felt weird is when i was driving, so i don't do that anymore. my daughter is with me, but she will be going to college soon. hoping them scary episodes don't happen when i m alone. i do have parents that don't live very far.
  23. i feel funny sometimes, not sure how to explain it. lightheaded maybe, or feeling like i may pass out... i do not like being alone anymore because of these scary episodes...
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