Question About Mast Cell Issues

[Sufilizard]

I'm new here, but so far, I've found people really helpful. I'm trying to wrap my brain around what's going on with me. I had a Tilt Table Test about two years ago that indicated a possibility of POTS, but I've had symptoms for about as long as I can remember. Anxiety and Panic Disorder were brought up in about '96 or '97, but I think those symptoms could have been related to Dysautonomia.

Anyway, last week someone here suggested that I look into Mast Cell issues. I'm curious how people would recommend I follow up on that - or what symptoms I should look for to decide if that is something I should pursue.

I've got one of those high-deductible insurance plans through work, so basically everything is out-of-pocket for me until I've hit my really high deductible. Therefore, I don't tend to do more than I absolutely need to medically.

I often deal with terrible insomnia, but Benadryl is the only thing that seems to help some - even prescription sleep meds haven't prevented the middle-of-the-night waking and Melatonin seems to have no effect whatsoever. With Benadryl, I still wake up in the middle of the night, but I seem to get back to sleep sooner. Unfortunately it makes getting up in the morning much harder.

Before I started on SSRIs, I had multiple "panic attacks" a day every day.

In my early 20's, I was a heavy drinker, but by my late 20s I discovered that sometimes even having a single beer would suddenly cause me to feel ill - and it almost always causes flushing. I hardly ever drink at all any more, but even now, I never know if I'll be able to drink a whole beer or feel really ill after the first couple of sips. I think I read somewhere about a relation between alcohol and Mast Cell Activation.

[Guest Alex]

Hello and welcome to the forum.

Since I just posted this in response to someone else's question, here it goes:

list of proposed criteria for diagnosing MCAS (was valid in 2010):

1. Episodic symptoms consistent with mast cell mediator release and affecting 2 or more organ systems, for example
a. Skin: urticaria, angioedema, flushing
b. Gastrointestinal: nausea, vomiting, diarrhea, abdominal cramping
c. Cardiovascular: hypotensive fainting or near fainting, tachycardia (rapid heart rate)
d. Respiratory: Wheezing
e. Naso-ocular: redness and swelling of the conjunctiva, itching, nasal stuffiness

2. A decrease in the freuency or severity or resolution of symptoms with antimediator therapy (H1 and H2 antihistamines, antileukotriene medications (Singulair, Zyflo), or mast cell stabilizers (cromolyn, ketotifen)

3. Evidence of an increase in a urinary or blood serum marker of mast cell activation: increase of tryptase level above baseline on 2 occasions or only once if the baseline level of tryptase is 15ng/ml or higher. This is the preferred method of indicating mast cell activation. Less specific markers are 24-hour urine with elevated level of histamine metabolite or prostaglandin metabolite, PGF2.

Here you have an article published in 2011 with plenty of info on diagnosing MCAS and possible treatment options.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069946/

Hope this helps.

Alex

[futurehope]

The following has my doctor, Dr. Afrin, as the lead author. It contains a lot of info, probably too much. In order to be evaluated, there will have to be some money spent. Otherwise, you will have to frequent a mast cell forum and learn the ropes from there. There are some OTC meds that might help.

https://www.novapublishers.com/catalog/product_info.php?products_id=42603

[bebe127]

There is also an article in Dinet's newsletter: http://dinet.org/2013Winter.pdf

Here are some articles that a program through my health insurance sent me: http://www.jhoonline.org/content/4/1/10 , http://www.ncbi.nlm.nih.gov/pubmed/21035176 , http://www.mastocytosis.ca/symptoms.htm , http://www.uptodate.com/contents/mast-cell-activation-disorders (not sure if this one is stricly for dr.s or if laypersons can read it too)

I haven't had a chance to read through all of the above information as of yet. Sometimes it's hard to get through all the medical jargon.

Hoping you find out some answers. I too suspect I might have MCAS and will hopefully get some answers too. I'll share anything I find out.

Be well,

Bebe

[Sufilizard]

Thanks for all the info everyone. I'm trying to sort through a long history of possibly related symptoms. I'm fairly lucky in that my symptoms have been as debilitating for me as they seem to be for a lot of people, but it still makes life a lot harder than it ought to be.