I used to buy famotidine very cheaply here before I had it prescribed by my GP -
https://www.biovea.com/uk/product/detail/1982/acid-controller-maximum-strength-125-tablets
You can buy H2’s anywhere, just google. Fexofenadine seems to be the favoured but cetirizine is very very cheap, you can buy boxes of amazon but check interactions with other drugs.
H1 and H2 combination with a low histamine diet made a difference to many “ME” symptoms for me. If I stop taking them for just a few days which I have during periods when they were difficult to get hold of during the pandemic, I can’t walk around the house and my speech returns to being stuttered and disappears completely in some cases. The H2 helps with gut motility. This regime has also really helped with pain and migraine. Migraines were unbearable, daily and included face pain which got worse as the day wore on which I could never understand. Now I get it as the “histamine or mast cell bucket” would fill up. Fibromyalgia is often misdiagnosed as MCAS apparently. I can well believe that from my experience.
It took a year of this regime to regain normal speech and build up strength, but the changes we slow to work and I wonder if people don’t give these long enough, but also it was much easier for me as I was so sensitive. It would be more difficult for someone less sensitive I would imagine.
Finding triggers helped too. For me they were heat, cold (retrieving food from the freezer sometimes tricky) chemicals - anything from some household cleaners to washing up liquid and hand cream, washing powder, deodorant. I was so sensitive, but I became very unwell. Stress, activity, avoiding fermented foods, foods high in histamines. And keeping windows closed as I am very affected by diesel and smoke. When I could leave the house car journeys would trigger me because friction can activate mast cells.
This is a good site -
https://tmsforacure.org/symptoms/symptoms-and-triggers-of-mast-cell-activation/
Adding in mast cell blockers and the advice from mast attack facebook page, website and here -
https://www.lymedisease.org/lyme-sci-mcas-agony/ (Not all of it) and using the very informative and supportive facebook groups. As above quercetin but it doesn’t help everyone, for instance if you don’t tolerate salicylates and high dose vitamin C if you are ok with that, really helps and helps after reactions.
I am still having seizures but they aren’t as painful or frequent and with less paralysis, so if you have those or if you come across anyone who does - using liquid cetirizine helps to stop them. I was so thankful for that advice as they were so bad I thought my jaw would crack on some occasions.
I was misdiagnosed with FND and left with nothing, so if I hadn’t have done this myself, dread to think where I would be now as my symptoms became slowly worse. Very thankful for the knowledge in our community and private Doctors who can prescribe mast cell blockers. I now have them on prescription and my GP is supportive of this diagnosis.
Many people seem to poo poo MCAS without even looking at any of the research which would be comical if we weren’t suffering so much and this wasn’t such an easy fix.
Merryn Crofts had MCAS. I wonder if the sickest among us have it very severely. I wish it was taken more seriously and treated on the NHS.
I recently had an allergist diagnose me with non specific chemical reactions who denied MCAS but their colleagues diagnose it, just I had been unlucky - “that’s not a normal allergic response” (really!?) - my body swells up, so I am definitely having an allergic response, and the ambulance crews measure my blood pressure as it jumps around all over the place, so that isn’t something I am in control of, and I have improved with the protocols the private Doctors have given me, which I started myself when the NHS abandoned me as an hysterical woman - but MCAS isn’t a thing
MCAS has an ICD 10 code D89.40 since 2016.
https://www.aapc.com/codes/icd-10-codes/D89.40
It takes a long time but hang in there.