redpeach Posted January 26, 2018 Report Share Posted January 26, 2018 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. Quote Link to comment Share on other sites More sharing options...
Jan Posted January 26, 2018 Report Share Posted January 26, 2018 Good question, I am tapering off Lorazapam and so far so good but going super slow. Quote Link to comment Share on other sites More sharing options...
p8d Posted January 26, 2018 Report Share Posted January 26, 2018 I came off fairly quickly, no problems. It did make the hyperadregenic component more obvious which led to me being tested and treated for it. Quote Link to comment Share on other sites More sharing options...
Terri Posted January 26, 2018 Report Share Posted January 26, 2018 P8d, how are you being treated for your hyperadregenic pots if you dont mind sharing? Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted January 27, 2018 Report Share Posted January 27, 2018 Tapering my oldest daughter off of diazepam. Going super slow. Right now POTS symptoms aren't being affected by it. Quote Link to comment Share on other sites More sharing options...
WinterSown Posted January 27, 2018 Report Share Posted January 27, 2018 I have been able to taper down to only a few doses a week, and only as needed. I have vertigo and take valium for the symptoms. Sometimes I must have that medicine. I do think that a combo of neuro and physical therapies with exercise have helped to reduce the occurence of the vertigo attacks. You have to find ways to reduce the need for the dosage before you reduce the dosage. Slowly cut back as you lose your need for the doses. Quote Link to comment Share on other sites More sharing options...
redpeach Posted January 27, 2018 Author Report Share Posted January 27, 2018 @Jan How slow are you going? Thank you for your reply Quote Link to comment Share on other sites More sharing options...
p8d Posted January 27, 2018 Report Share Posted January 27, 2018 @Terri I started with clonidine which dropped my BP too much so switched to methyldopa which I find more smooth. It does drop my BP but I mess with my fludricortisone dose and salt and water intake which is sometimes successful and sometimes not. Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted January 28, 2018 Report Share Posted January 28, 2018 Like WinterSown, my daughter takes the diazepam for her vertigo. How low we can go all depends on her vertigo. It's a very scary thing to go off of the one thing that made all the difference in the world as far as her vertigo. But we will very slowly keep plugging along. My daughter has MCAS as well, and when her vertigo is bad, sometimes she will take an extra Benedryl instead of increasing her diazepam. With MCAS, we find that her body really likes the extra antihistamines. Helps to keep it calm. She had an upperGI endoscopy where they also did some motility testing while they were there. The second medicine that they used to stimulate her small intestines gave her a bad reaction. Face got all blotchy, throat was starting to swell... nurse ran and got some Benedryl and shot it through her IV. In about a minute, all was well again. Kind of scary, though. Quote Link to comment Share on other sites More sharing options...
Jan Posted January 29, 2018 Report Share Posted January 29, 2018 On 1/27/2018 at 7:29 AM, redpeach said: @Jan How slow are you going? Thank you for your reply I was taking 1 mg in the AM and 1mg in the evening of Lorazapam for over 10 years. I went down 1/4 pill in the AM for a month. Then another 1/4 pill so now I take 1/2 in the AM and 1 at night. How is that for slow? I plan to reduce 1/4 a month until I am down to one a day. If I do OK, I will do the same with the evening pill. But it seems like the evening pill really helps when I get overstimulated, which might be as simple as going to a potluck. I hope to get to "as needed" at some point. Quote Link to comment Share on other sites More sharing options...
redpeach Posted January 30, 2018 Author Report Share Posted January 30, 2018 @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. Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted January 31, 2018 Report Share Posted January 31, 2018 She's been on valium about 2-1/2 years, before that she was taking lorazepam. Right now here valium dose is about 27 mg. She is coming down from 35. We are slowly breaking the tablets up and needing less. Don't know how low we'll be able to go. Quote Link to comment Share on other sites More sharing options...
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