My experience with Mast Cell Activation Syndrome (MCAS)

Acute mast cell reactions can be triggered by various things and are almost the biggest challenge to me. Histamine rich food, stress, physical activity, coffee, alcohol, heat or cold and different smells can lead to allergy-like symptoms.

In my case symptoms can vary from dizziness and vertigo to presyncope. A major challenge is brain fog which occurs frequently. It is a feeling like you cannot concentrate or see very well. Additional there is nausea and gastrointestinal cramping which can put me in bed for days.

Acute mast cell activation episodes often hit me without being prepared for it and start with flushing, strong nausea, pain in my stomach and diarrhea. Then the problems become worse until I am suffering from heavy stomach cramps for up to 24 hours. After those episodes my body is very weak, my legs start to cramp and I am very exhausted which makes me sleep up to 12 h. Usually it takes a couple of days until my condition stabilizes again. Nausea is usually the last symptom to disappear. I also had month with constantly a couple of those symptoms without knowing the causative factor.

Especially the gastrointestinal issues limit my everyday life a lot. My stomach decides about how far I can go from my home, what I can eat or if I can eat outside at all. If my condition worsens when I am not at home I can hardly stand on my feet and need to get back home as soon as possible.

When I was a child I had no special problems with eating. As a teenager I developed some allergies for the first time. Additional a „irritable bowel syndrome“ was diagnosed. I got lots of problems with severe diarrhea and mild eczemas of my skin.

I started to take H1 blockers when I was around 16 years old but only during the summer months.

Pretty tough mast cell symptoms have developed after the infiltration therapy with lidocaine and cortisol. It is very possible that mast cells had a huge role in the beginning of my diseases.

Unfortunately it happens that triggers are getting more over time. For example since a couple of months I have been reacting very bad to ECG electrodes and band aids.

My therapeutic approach consists of histamine low diet and Desloratadin (H1 blocker) twice daily. Additional I take Daosin before every meal and have some emergency medication in case a severe allergic reaction occurs.

By now I tolerate the medication very well. In the beginning I was very tired (even more than I was already) but my body somehow got used to it. Sadly lots of the triggers are involuntary and not avoidable. This means medication is very important for my therapy.

I write down everything in my mast cell diary especially if symptoms get worse. I also note what I ate that day which lets me connect symptoms and possible trigger. Often it is not only one trigger but more a combination of things for example if I had chocolate on more than one day or similar small sins… Then there comes a point when a border is crossed and my body simply cannot handle the histamine anymore.

Since I have been taking the H1 blockers and the Daosin my gastrointestinal issues have significantly improved. If I follow my histamine low diet the severe stomach cramping does not occur that often and my life quality is better.

Update 2016:

With the additional intake of Ibuprofen, the new measures to control dysautonomia, and the „if needed“ Ranitidine in the evening I can keep my gastrointestinal issues under control. There are repeatedly episodes of massive issues but they become less frequent. Ibuprofen might act as antihistamine but unfortunately is no long term treatment option. In the future I have to find another pain med which acts the same way.

If you want to learn more about MCAS have a look here.