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redpeach

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About redpeach

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  1. Anyone find benzos help calm the sympathetic nervous system down?
  2. Has anyone been to Mayo in MN and been seen for Mast Cell too? Thank you so much.
  3. Has anyone came off of a benzo (Valium, Klonopin, Ativan, Xanax) with dysautonomia and been ok after? I'm tapering off of valium and it's been so hard. I also have MCAS too. Thanks everyone.
  4. @DizzyGirls I'm so sorry about your daughter. Do you mind me asking how long she has been on valium and what dose? I'm now at 17mg a day. I have been on valium for 8 years.
  5. @Jan How slow are you going? Thank you for your reply
  6. Has anyone came off of a benzo (Valium, Klonopin, Ativan, Xanax) with dysautonomia and been ok after? I'm tapering off of valium and it's been so hard. I also have MCAS too. Thanks everyone.
  7. @Jojo79 How are you being treated for sjogrens? Thank you so much
  8. I had some bloodwork done to test for mast cell activation disorder, and this test came back abnormally high: IGE ANTIBODY (ANTI IGE) I've been diagnosed with dysautonomia and small fiber neuropathy since 2003 with unknown etiology. Does anyone know what this high level means? Thanks everyone.
  9. Thank y'all so much!! And yes, I was diagnosed with dysautonomia and sfn at Mayo in MN in 2003. Said it was idopathic. This disease is terrible.
  10. Does anyone have small fiber neuropathy with their pots? If so, where you able to get an answer as to why? My feet get ice cold, then burn and turn bright red. Sometimes when I walk they itch and go numb too. Something underlying has to be causing this! I also have full body aches, supine tachycardia and crushing fatigue. I feel so alone..
  11. @MomtoGiuliana Thank you for your sweet reply. I'm so happy your friend is better now. I struggle with the decision to come off the valium and worry so much about getting those horrible adrenaline surges and overall hyper-stimulation at all times. I wish I could talk to someone who had dysautonomia before going through a benzo taper. Everyone I've found developed dysautonomia during or after their tapers. So upsetting...
  12. @mountain girlI tried tapering earlier in the year and went too fast and crashed. I've now been at my original dose 20mg/ day for the past 2 months and I still feel like I'm in withdrawal. What is happening?? I'm afraid I've flipped a switch in my brain by shocking my nervous system and the valium isn't working anymore. I'm depressed (never been in my life), agoraphobic, can't feel joy. I was fine before this benzo crash. I'm so confused. My doctor has no clue.
  13. I just say I get overstimulated while driving. Between the noises, the light sensitivity, the movement in front of me, peripherally, it's just too much for my sensitive nervous system. Some days are better than others. Some days I can't drive at all. Lots of days I can barely take the sunlight on the front porch.
  14. I was diagnosed with dysautonomia in 2001. It waxed and waned and got debilitating with horrible migraines in 2003. After a severe vertigo attack in 2009 I was prescribed 20mg valium. I've now been on it for 8 years. I would like to start tapering off but I'm afraid. It's not working like it used to and my doc wants me off. Has anyone out there came off a benzo and made it to the other side? Thanks everyone.
  15. Has anyone been on benzodiazepines long term and tapered off of them successfully with dysautonomia? I've been diagnosed with dysautonomia since 2001 and have been on valium for 8 years. The valium kept my dysautonomia in remission. However, these drugs are not good to take long term so I'm currently tapering. Just trying to get an idea of what's to come. Thanks everyone.
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