Ketotifen helped inflammation, pain and brain fog
I'm posting this here because I used this group to research and I just wanted to add my experience in case it helps someone else. I have MCAS/hyper pts/heds.
I am on cetricizine (H1 blocker) 20 mg bid, famotidine (H2 blocker) 40 mg bid and Montelukast 10 mg (reduces leukotrienes)
Ok so I had a mold exposure that really set me off but beyond that I had facial flushing, all over itching, severe gi issues and brain fog as my main symptoms. The H1/H2 blockers helped with that and I left the mold environment, got better, ate homemade low histamine fresh foods but months later I noticed my back was still itchy, if I scratched my skin it left marks and I have hives on my bottom and waist from compression garments (delayed pressure uticaria). I noticed the skin scratches weren't raised and turned white when pressed so it's not dermagraphism, maybe just heds delicate skin. Still the uticaria and itching seemed like MCAS.
I started Montelukast in hopes it would address the remaining issues, since I was already on a H1/H2 blocker and Ketotifen is hard to get. My pots remained severe and I wanted to address as much mcas underlying issues as possible.
Montelukast made my arm swelling go down. I didn't realize I had arm swelling. I had sore shoulders too but just assumed I slept wrong on them. (I would later find out this is all MCAS)
But the itchy skin and pressure based uticaria continued so I got my hands on Ketotifen (not easy!). I was started on 1 mg and immediately flared. Hr and bp were up, I slept badly. I tried to power through but couldn't. I stopped. A week later I tried again on a lower dose. Same thing.
So Ketotifen makes adrenaline receptors more sensitive for about 4-8 weeks as you adjust. If you have hyperadrengic pots then you have a ton of adrenaline, norepinephrine etc constantly being pumped into your system, then the ketotifen makes the receptors more sensitive and boom flare. The second thing is that Ketotifen is mildly anticholinergic -- not as bad as benadryl but if you're super sensitive it might not be great for dysautonomia.
What finally worked:
Mestinon and propanolol (which I was taking anyway) moved to be timed with ketotifen so they could offset the part of Ketotifen that was flaring me. (Mestinon is cholinergic and propanolol blocks adrenaline before it can bind to the Ketotifen sensitized receptors).
Was able to take 1 mg Ketotifen x 2 in a day without flaring.
So far Ketotifen reduced my pain, swelling and brain fog right away but I will take a few weeks to know the full effects. I was really shocked at how many symptoms I still had after all the meds, diet changes, new environment etc.
If any of this sounds like you, I'd check it out.