MCAS

[[mi...]]

Just got off a telehealth call with my psych nurse and told her about my destabilization due to med switches and she immediately brought up Mast Cell Activation, which I had wondered about, but never in a million years thought a psych person would suspect. She said she isn't diagnosing me with that but that she's done a lot of research over the years and that we all have a tipping point and those with MCAS can be thrown into destabilization by various stressors, with BZD WD being a major one that can cause this. She said it can cause serious gut issues, and inflammation all over the body. Any symptom at all can be attributed to it really. She wants me to start on Cyproheptadine today to try to reduce the pain in my gut, and wants me to see an immunologist to discuss MCAS. I have had horrible neuro inflammatory issues in the past to surgeries, drugs, mold before i was ever on benzos, so this makes sense that i have more than just a benzo issue going on, but that benzos were the trigger this time and obviously I'm worse since WD is so bad. Just a thought. Hoping I don't react to that med they want me to take.

[[An...]]

@[mi...]

This is my situation, 100%. Relate to everything you said. I have been clinically diagnosed with mcas by two docs. Inflammation is my hallmark symptom. And yes, benzos were my tipping point for the inflammation to explode. I've also had previous reactions to antibiotics, mold, and very strong fragrances/chemicals, but nothing life altering like this. 

I would love to know how the Cyproheptadine works for you. Can you keep us posted? Really hope you get some relief.

[[mi...]]

Absolutely. I’m assuming I won’t tolerate it because I never really seem to tolerate anything and obviously I’m hypersensitive right now even more so, but I have no choice. The interesting thing for me is for the first two years I was on Klonopin I felt the healthiest I felt in my entire life. All of my previous health issues went away. Like almost completely. Brain fog, sensitivity to things, I could eat almost all foods, after not being able to eat so many things throughout my life, it was a complete miracle, and since they gave me Klonopin, when I was inpatient they made me stop taking all of my vitamins I had taken for 20 years that were sort of helping, but not really and I got even better. so well, I know benzos are a dangerous game. They gave me my life back, not just psychologically, but also physically neurologically. There’s a huge price to pay, but it shows me that there is something in my nervous system that does not regulate well, and I resigned to the fact that I will probably need some sort of medication to control that since diet and years worth of functional doctors, and supplements and treatments of all kinds never was able to stabilize me fully and often times made me feel worse and then a stupid little orange pill, that is now destroying. My life gave me almost 2 years of the best life I’ve had in a long time. Do I regret getting on benzos? Probably because of what it’s doing now, but did I have some of the best healthiest time in my life where things that I never expected were related went away? Absolutely.  my taper was very moderate to mild in terms of symptoms, and I lived a full life while I was tapering. I didn’t randomly get sick when the drug stopped working. I was exposed to a little mold back in May for a couple of weeks and then I did some branch changes right afterwards and my psychologist or nurse practitioner lady this morning told me all those things probably activated  Mast cells in my body over the edge. She said that normally that shouldn’t be enough to completely stabilize you since my dose stayed the same and that it was probably stressors on my nervous system. They just needed a little bit of pushing to cause complete dysregulation. I agree because I’ve had vitamins and minor surgeries put me into six months, depressions well before benzos, and those depressions came with all sorts of neurological complications . Maybe the lining and all of this is that I will finally figure out the root cause of my entire adult. Life has been marked with health problems. That would be nice. Now let’s just cross our fingers and hope that his medicine gives me some symptomatic relief while I wait to make an immunologist appointment. 

Edited October 30, 2023 by [mi...]

[[An...]]

Wow, such similar stories. I really hope this medication helps with your mast cell issue. My doctor wants me to try low dose Naltrexone. For inflammation and Mast Cell issues. I have it sitting right here and I have not been brave enough to give it a try. It's a teeny tiny compounded dose, and I really do think it could help. But I'm very nervous to try. I am similar in reacting to most supplements and even foods. I will let you know if I try the Naltrexone. I wish you the best with the Cyproheptadine. 

[[mi...]]

I tried LDN 10 years ago. It made me feel depressed so i stopped it. But I hear it's just a luck of the draw thing. It either world or it doesn't. For me it didn't. I stuck with it for a month I think. The benzo taper is tough, but for those with preexisting issues, i think that's what makes it complicated when things go wrong. Also, I think protracted is way more than gaba receptors but that is just a total guess. But I think genes play way into this and also hidden health stuff that are exposed with Benzo withdrawal. There's just no way gaba receptors are the only thing going on. It's probably primary, but nothing in the body is in isolation. That being said, I think it's probably possible to get off anything if you go slow enough and find a way to treat root causes of other dysfunction. When people have issues 10 years out it definitely can be an injury, but it also can just be unearthed health issues that need help. Like I've heard of people getting benzo belly 3 years after they are off the drugs. I honestly don't think that's gaba receptors at that point, something triggered something and the dysregulation in the body likely flared something up. I will say I think many are forever changed after these drugs and permanently sensitive, but that doesn't mean people can't live well with time and help. I was polydrugged 20 years ago after a bad mold exposure and i was sick much of my 20s. It was hell. I'm now 43 and have had lots of good years mixed in, and also crappy years, but I have made tons of good memories and have a wife and three awesome kids. Work has definitely suffered and my career never could stay level so my wife is the breadwinner. But other than my bad crashes I have managed to make awesome memories and be happy with what i can do and not worry about what i can't. 

[[Va...]]

Hi,

did You try cyproheptadine?