A Few Mcad Questions

[davecom]

I've been reading this article:

http://hyper.ahajournals.org/content/45/3/385.full

Out of curiosity:

1. How long until you noticed H1/H2 blockers making a difference?

2. Do you flush in one specific area always?

3. I know beta blockers are counter-indicated for MCAS patients. What reaction do MCAD patients get from them?

4. How high does your blood pressure rise upon standing?

5. Did your original symptoms start suddenly or did you have them most of your life? What was onset like?

[Christy_D]

My son has MCAS and H1/H2 antihistamines have not been all that helpful. Dr Afrin has a very long list of medications for him to try and he said some people get no relief at all. Although, doxepin at a very high dose was helpful for about 6 weeks(a couple of years ago). Doxepin has antihistamine in it.

My son doesn't flush, but I think that is because of the doxepin which he has been on since Oct 2009 prescribed for his POTS. He takes a higher dose than anyone else I have ever spoke with.

He was put on a beta blocker a couple of months ago by his neurologist for his POTS. Before starting it I checked with the MCAS doctor and he had no problem with it. He said many people with MCAS can handle beta blockers. Trial and error as with any medication.

HIs blood pressure does rise when he stands, on average it is around 145ish/80 something. I need to actually see what it does now that he has been on the beta blocker. He was prescribed the beta blocker because he experienced near vasovagol(sp?) syncope at his last neuro appt. His heart rate went from the 90's then up to 110 before plummeting to 55 and nearly passing out during a Poor Mans TTT.

HIs symptoms were a gradual increase in number of symptoms and severity. They started in the 5th grade for him and became a daily issue in the middle of his 8th grade year. He just graduated high school, so this has been going on for quite some time. His starting symptoms were GI related, nausea, vomiting, constipation. He later developed the dizziness, headaches, etc..