I got diagnosed 3.5 years ago with pots. I complained about histamine issues but just only got a few labs back supporting MCAS.
In the beginning I started Paxil and moved to cymbals for the bump in BP and help with anxiety that was pretty overwhelming after the big collapse that got me the diagnosis (some symptoms for a about 6 months before, but collapsed to barely being able to walk in a matter of a few weeks). My ANA was positive at the time but everything was in normal range, low end vitamin d. Recently had sjorgens early antibody test positive for 2 antibodies but rheumatologist I saw said she would not accept the lab panel.
This last January I got what was very similar to COVID, but we weren’t testing then. After that my system collapsed again. (I had to stop the cymbalta 3 months prior bc I was developing extremely hot hands and feet and burning skin, fever low grade, itchy skin everywhere and it felt like it was on fire. ) after that system collapse I have been unable to take another ssri without developing extreme anxiety with it and then also itchy throat, skin, GO symptoms, ect. I have been taking clonozapem ever since then. Zoloft I did for a while but could not take it without the clonozapem and it gave me horrible GI symptoms. Paxil gave me a Panic attack so bad I went to the Ed bc I couldn’t even walk, was sweating all over and had extreme muscle weakness. After that visit I developed muscle twitching with anxiety, which is now pretty constantway worse with anxiety.( All nerve conduction studies are normal and small fiber study was inconclusive. Feet and arms normal, leg had backwards decrease, worse on top than on the bottom.) so I use clonozapem for the anxiety and muscle twitching. My neurologist suggested lamictal or Wellbutrin. Currently trying lamictal but I am not sure why he suggested it..maybe the anxiety. Anyway have increased anxiety and weakness on the beginning dose and I am super afraid to start the higher dose.
side note, Off an ssri I get super weak, brain fog, GI issues, ect, and just can’t function. On one I gain a lot of my life back, even physical strength.
But I thought I would ask anyone with MCAS take an ssri or snri successfully?