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samannran

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About samannran

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    Advanced Member
  • Birthday 06/17/1976

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  • Gender
    Female
  • Location
    Arkansas

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1,822 profile views
  1. My legs feel very heavy, ache, and look a horrible purple color. I'm so thankful for support hose!
  2. Yes! I woke up extra early and alternated the treadmill & Pilates every morning. I miss working out so much!
  3. I am worse than I was six months ago. I have steadily gotten worse over the last several years.
  4. I've been battling dysautonomia for eight years now. I wasn't given a prognosis about getting better or worse. Since being diagnosed, other organs have been affected. I now have pure autonomic failure, and I can only eat soft foods because of gastroparesis. I know some people do recover, & my neurologist told me it's rare for people to develop PAF. Unfortunately, I was one of the few. I hope you have a full recovery. 
  5. I have fibromyalgia. My neurologist feels it goes along with the PAF. I just got back from my rheumatologist appt. I get shots of 4 mg of Decadron every six weeks for the fibro and the coat hanger pain in my neck and shoulders. I also take Cymbalta, Tizanidine, and Tramadol along with my other meds for PAF. The shots help for five weeks. I'm still in pain, but it's tolerable. The shot are painful but worth it.
  6. Hi. I have taken Diltiazem for many years now along with Coreg. This combo is the only heart meds I can tolerate. All others drop my bp too low. My experience has been a positive one.
  7. Hi. I have taken Diltiazem for many years now along with Coreg. This combo is the only heart meds I can tolerate. All others drop my bp too low. My experience has been a positive one.
  8. I'm one of those people that starting fainting as a teenager. However, I started progressing in my twenties, and it hasn't stopped yet. I'm 35. I know people who develop dysautonomia in their teens are supposed to have a better outlook, according to research, but that's not always the case. I'm sincerely happy for those who go into remission. I just wish I was one of the lucky ones.
  9. Do you have gastroparesis or slow motility issues? If so, it's taking a long time for your meds to get absorbed and through your system. I have gastroparesis, and it takes an extremely long amount of time for meds to kick in.
  10. Hi, I'm sorry you are feeling so discouraged right now. It is understandable. I don't have mast cell issues that I know of, haven't been tested, but I have PAF. I can relate to your feelings. It's hard to be young and deal with needing a wheelchair. I'll be 35 tomorrow and hate that I need a scooter to go out with my family. For me, PAF didn't come on immediately. I started fainting at 14, was diagnosed with NCS at 27. Then I started progressing, so the diagnosis got OI added to it, then PAF as other systems started failing. I am worse than last year and wonder when the progressing wi
  11. Yes this happens to me often. Your bp was low at those numbers. When this happens to me, my bp is usually low. My hubby or daughter elevates my feet and rubs my legs to help get my bp back up to a better number. If noone is around, I lie down, pray, and wait it out. It is scary. I talked to my neurologist about it, and she said that's the autonomic failure. When the bp lowers, less oxygen gets to the brain.
  12. I took Zoloft for two months and felt terrible the entire time. Low bp, dizzy, and I felt like I was walking around in a dream. I was switched to Lexapro & gained ten pounds almost immediately. I took Effexor for a few years and had good results with it after the first few days of severe nausea. I recently was diagnosed with fibromyalgia and switched to Cymbalta to help with pain. So far, I haven't experienced any side effects.
  13. I was diagnosed with fibromyalgia about a month ago, but I've had symptoms for years. I'm in a very bad flare right now. Ugh
  14. I don't think you are being pushy. You know your body better than anyone. If you feel this is a test that is necessary, then ask for it and be persistent. Hopefully you will find some answers.
  15. My neurologist filled out an in-depth prescription stating the reasons a scooter was medically necessary. I am a teacher, and she wrote on the prescription that I would need the scooter for work at times. She also wrote that I needed it to complete household chores. Her office contacted the medical supply store that my insurance uses, and they came out to measure me. I have a $1500 durable medical equipment coverage, and I can get a scooter paid for every five years. My doctor also explained that I couldn't maneuver a wheelchair because of muscle weakness. She also explained why i couldn't
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