redpeach 0 Posted November 21, 2017 Report Share Posted November 21, 2017 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. Quote Link to post Share on other sites
mountain girl 0 Posted November 21, 2017 Report Share Posted November 21, 2017 When you say the valium is not working like it used to how would you describe it? The reason I ask, is that I am on lorazepam (Ativan) 1 mg. I have been on it as needed since 2008, and now take it once or twice a day. I do not feel like it is as effective as it was when I first started taking it, but it still helps. So no, I have not gone off of a benzo and made it to the other side, but I can easily not need it for a day and be okay. I don't think I have ever gone longer than a day or two with out. Quote Link to post Share on other sites
redpeach 0 Posted November 21, 2017 Author Report Share Posted November 21, 2017 @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. Quote Link to post Share on other sites
MomtoGiuliana 0 Posted November 21, 2017 Report Share Posted November 21, 2017 So sorry you are having a difficult time. I have a friend, w/o dysautonomia, who has struggled with tapering as well. I know she is doing better now but it took well over a year and it was very difficult. The good news is she is off it now and much better. Quote Link to post Share on other sites
redpeach 0 Posted November 21, 2017 Author Report Share Posted November 21, 2017 @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... Quote Link to post Share on other sites
MomtoGiuliana 0 Posted November 22, 2017 Report Share Posted November 22, 2017 Thanks--yes I am so happy she is better too! Have you tried doing a search on the forum? This topic has ben discussed in the past. But those members may not be active on the forum anymore. Quote Link to post Share on other sites
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