For years I had abdominal pains that were in part caused by hyperventilation and disordered breathing but the doctors could not understand why. I then started to have the symptom , triggered by sitting in a certain position , of episodes of a warm taught pain across my lower back and a tight chest and wheezing.

After a while sitting became impossible as it triggered all sorts of unpleasant sensations, twinges, aches , taught , heat etc and my blood pressure would go very high.

I then started to have random episodes of what felt like the release of a chemical at different places through the trunk of my body, a kind of twinge followed by tingling heat, taught inside, burning etched etc, my hands would go red and the skin would go kind of loose.

I live in the uk and the urine tests for histamine, and other mast cell by products are not available on the public health system. My doctor has diagnosed me with mcas and I have been on ketotifen, and lorazipan, then adding cromlyn. In general my episodes have greatly decreased in frequency and effect  but I still can not sit or lie on my back without triggering unpleasant sensations.

I still get one bad  episode a day , occurring at about 3 am each night ?

In the process of discounting an endocrine problem the pet scan showed an area of focus in my lower back that on follow up with a ct scan revealed a congenital bone disorder that the doctors thought was harmless, not related to my symptoms.

I note in a paper by prof valent he notes the importance of discounting a local source of mast cell activation and describes how individual organs or area of the body can have localised mast cell activation.

Does anybody have experience of this ?

Many thanks
Gawain

Are you taking any daily preventative antihistamines? If not, you should, consider that, especially at night, because that will help keep your mast cells stable at all times. Then perhaps you won't have any more problems at 3 am.

Typically many of us take zantac and allegra in the morning and zantac and zyrtec in the evening. At times of high triggering, it is common to take double doses. For example, right now I am really sick with a respiratory illness. When we get sick, it can trigger our mast cells. For me, antibiotics also trigger my mast cells. So, to prevent any problems, I am taking double doses of my antihistamines around the clock. Specifically in the morning I take Zantac,, Allegra,, and Zyrtec and I take the same thing in the late afternoon/early evening. I am doubling the meds right now to prevent any reacting to the antibiotic that I must take to get rid of the respiratory illness. Normally I just take Zantac and Allegra in the morning and Zantac and Zyrtec in the evening.