I refuse to accept this as my 'normal'
TLDR - diagnosed with benzodiazepine-induced neurological dysfunction, convinced there's more I can be doing, doctor doesn't have much of any advice.
I've been in a absolute fog for too long trying to figure this out all by myself.
I'm a 30 year old female, and my health has been on the decline for awhile now due to the unfortunate situation I've been stuck in. The short version is this - For around 5 years now I've been tapering off benzodiazepines. They have destroyed my health in too many ways to list, and it just keeps getting worse. The entire taper process has been very slow. Recently I've been officially diagnosed with benzodiazepine-induced neurological dysfunction (BIND), and every small decrese we try to make results in a domino effect of issues ranging from histamine intolerance most likely due to decreased DAO function, to hair loss, to nasal polyps, low immunity resulting in shingles, premature graying, temperature disregulation, near syncope, horrendous sleep- the list genuinely goes on and on.
I see my doctor (DO) regularly for my taper, he's incredibly knowledgeable when it comes to addiction medicine and specifically benzodiazipine injury. I've asked his advice in the past on other vitamins and supplements I should be taking, as I've read many studies claiming specific vitamin deficiencies in people dependent on benzodiazipines like calcium, vitamin D, and B vitamins.
He's had no input on this. The only suggestion he gave me was to take vitamin D, which I do, but I haven't noticed it making any difference in my quality of life.
Now, I'm very aware that most of the negative things I'm experiencing is indeed a direct result of my GABA, but it's insane to me how in the last few years, I've noticeably become very unhealthy. I just look...not myself. My skin is dull, I have inflammation, I'm constantly weak, I just feel like a shell of who I use to be.
I've had countless appointments with my regular pcp doctor, many blood tests all pointing to nothing. My cbc's and other metabolic panels over the last few years have all been essentially normal, with a few things being slightly off but "not enough for concern". (Slightly low hemoglobin, Neutrophils low, Lymphocytes high, RBC low, Hematocrit low, MCH high, Erythrocyte Distribution Width CV low) I'll admit, im having a hard time understanding all of this.. its so difficult to grasp because of how much memory loss I've suffered due to the BIND. I have such a hard time arranging my thoughts In a way so I can dissect them and come to conclusions - and I feel trapped within this state. Nobody has any advice or any suggestions and it's been this way for too long.
I took it upon myself in the last year to carefully experiment with vitamins and supplements and different ways of eating in a attempt to improve my quality of life.
Intermediate fasting and OMAD seems to slightly control some of the histamine things, but not all.
Currently, I take a vitamin d&k combo, vitamin b12, and ester C.
I've tried other things here and there, but the only thing that has seemed to make a noticeable difference is the b12. I just feel generally better during the day when I take it.
I recently picked up some zinc, and some copper to hopefully address the hair issues, and I plan on starting those tonight.
Given my situation- does anyone possibly have any suggestions or advice? I'm willing to try anything at this point. It took me too long to even put together this post - my brain just lags. But thankyou to anyone who took the time to read this, and thankyou in advance for any advice. I just want to feel some normalcy again.