Author Topic: My Theory on Benzo withdrawal and connections to MCAS and POTS/DYSAUTOMNIA  (Read 2421 times)

[Buddie]

I have no idea what any of those abbreviations are.
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[Buddie]

This is a very interesting thread.  10 months out I feel like I have a mixture of fibromyalgia and CFS.  The fibro started when I tapered off gabapentin, then got worse when I started Ambien taper.  When I get stressed all symptoms intensify and I get awful flares lasting days to weeks.  I worry it will never clear up.

So strange someone mentioned Annie Hopper's DNRS...I was all set to try program that when I thought my pain was due to psychological origin, but then realized I was in tolerance withdrawal. Maybe I'll give it a try after all.  Amazing how much overlap these conditions have with mind-body syndromes.  Such a complex interplay of biochemical and neurological activity  :(
« Last Edit: May 30, 2021, 08:18:21 pm by [Buddie] »
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[Buddie]

I've been looking at MCAS as being a possible underlying cause of benzo PAWs and think there may be some merit to it.

I've been taking some things and altering my diet around the MCAS theory, but so far I haven't see a positive result at only a week into it.

Have you taken steps along the lines of treating MCAS and have you seen any results from it?

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[Buddie]

Just got my blood work back
Shows I have MCAS.
Had no probs before withdrawal.

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[Buddie]

What test did you have for the MCAS?  What is it anyway and what is going on inside your body?  Is it autoimmune?  What are your symptoms? 
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[Buddie]

I've been looking at MCAS as being a possible underlying cause of benzo PAWs and think there may be some merit to it.

I've been taking some things and altering my diet around the MCAS theory, but so far I haven't see a positive result at only a week into it.

Have you taken steps along the lines of treating MCAS and have you seen any results from it?

I have. I take a Claritin in the AM along with a Pepcid and my metoprolol then in the evening I take a Zyrtec with my second metoprolol dose of the day. Aside from severe muscle, nerve and joint…. Pain and spasms. I’ve been feeling pretty okay.
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[Buddie]

What test did you have for the MCAS?  What is it anyway and what is going on inside your body?  Is it autoimmune?  What are your symptoms?

The tests for MCAS are urine and plasma histamine levels. Urine leukotriene and prostaglandin, as well as plasma tryptase levels. The diagnosis of MCAS relies on your tryptase levels. If your tryptase levels are elevated. Or if you have three tryptase levels taken. So the first one would be when you are normal and not in a flare. That would be your baseline tryptase. Then you would get two additional tryptase level draws when in a flare. If they are elevated from baseline then you have your diagnosis. MCAS is all around tryptase levels.
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[Buddie]

How is it treated?
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[Buddie]

How is it treated?

Some people treat it naturally with supplements. DAO supplements before eating(if your reactions are more food related) high dose vitamin C(vitamin c helps flush histamine out of the body). I use H1 and H2 blockers which is what most people I know of use. I take a Claritin and Pepcid in the morning and a Zyrtec at night. Some people have a severe case to where they need H1 and H2 blockers as well as mast cell stabilizers such as Ketotifen.  It really honestly depends on your blood work and treatment plan with your allergist once you are diagnosed.
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[Buddie]

I think some people *may* need to be cautious that a histamine response (not MCAS as defined) isnt a warning of another issue.. Like in my particular case, I strongly suspect a “leaky gut” situation that flares if im not careful.. It took a bit to put it all together though, and I aint letting a “Dr” anywhere near my guts again..
-Just a little warning about blindly treating “symptoms”..
:)
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