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12 weeks off today… Made it 3 months

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Little back story as to how I got here. I started having what I now know as histamine dumps and nervous system dysregulation 10 years ago after losing a loved one. I went from doctor to doctor trying to figure out what was causing these sleep panic attacks and how to get them to go away. I tried regular medicine and alternative. Benzos were used for a week or two but I didn’t like the weird WD so I quit them. Most days I was high functioning, just really anxious with occasional awful sleep. I eventually landed on the autoimmune protocol diet which helped quite a bit but not fully. All blood tests were normal.

Fast forward to 2020 (6 years later)… a stress flare over that summer made me pretty much bed bound. I did hypnotherapy, saunas, sleep studies… nothing helped. Enter benzos again. I only used as needed for a month or two. Mirtazapine and LDN along with some brain retaining helped me back on my feet. I no longer needed the benzos.  

Now we’ve reached 2022. I came off the LDN and didn’t realize it but all hell slowly broke lose after that. I went to more doctors. We chased our tails until finally I said, maybe it’s Lyme? I was tested. It was borderline so I began treatment. I started with ozone IVs. I became much worse. Enter benzos again. They helped. Then I went and had magnetic Lyme treatment because I figured that was less invasive. I spiraled. I ended up in the hospital. I had MCAS. IV Benadryl and Pepcid saved me from a flare where I couldn’t eat or sleep but it didn’t fix me. I continued to use benzos once or twice a month to stabilize the MCAS flares. Eventually it became a use of 1-2 a week. Then the inter dose WD started. So did weird nerve pain. 

It has been a year from hell after Lyme treatment. I finally somewhat stabilized with H1/H2 antihistamine blockers, eye yoga and vagus nerve calming. I got off the lorazepam. I felt awful for a week and then so much better. The first 5 weeks off it seemed I had found the next layer of healing and I was so excited that I traveled. It was hard but I did it. Airplane and road trip.

At 8 weeks out I seemed to be getting worse by the week. I’m at 3 months now. My brain can’t wrap its self around taking so many steps backwards. Was I better on the benzos? Were they stabilizing my mast cells? The benzo groups say HELL NO. The mast cell groups say that benzos help them so much. Who is right? Where do I land in all of this?

I struggle to breathe deeply. I wake up every morning at 4AM and restlessly try to sleep until 6:30AM. I feel like I have the flu almost everyday. Fatigue. My eyes and face look like I have aged 15 years overnight. I look so tired, especially in the eyes. My hair is dry, thinner and graying faster. My worst and latest symptom is throat spasms where my stomach pushes up. The outside of my throat is tight and sore. I can only tolerate about 10-15 foods despite a low histamine diet. I can’t even get started on the severe anxiety and depression spells. They are honestly worse than the throat like closing spasms. 

I don’t know. I don’t want to go back on but what if this suffering is all MCAS?

If you’ve made it this far through my novel I commend you. 

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Hi,.really good stuff on getting of the benzos especially with your health condition,not an easy task at all,.it’s a bit of a conundrum when there getting mentioned that they help with the mcas as well,I think when folk have conditions it’s about weighing up the quality of life with or without,a decision many a folk have to make to.

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