MCAS plus other weird symptoms?

[CTucker]

Hi all,

I’ve had MCAS for a while, though not officially diagnosed, because it’s hard to find a doctor that knows about it. In the last 4 weeks, after a bad reaction to medication (Lexapro), I’ve been experiencing tremors on an almost daily basis. It ranges from mild teeth chattering to full body convulsions although I’ve never lost consciousness. I’m thinking it has something to do with histamine being highest in the morning? Benadryl does help control it, but I don’t know if it’s because it blocks the histamine, or just has an effect on the central nervous system. Has anyone else experienced this, or just being worse in the morning in general? What have you done to feel better?

[Researchfan]

Hi. Hope you feel better soon. Have you tried following a low histamine diet in addition to taking Benadryl antihistamine?I’m not a Doctor but from what I’ve read according to Dr Janice Joneja on Histamine Intolerance and MCAS a low histamine diet and antihistamines can help symptoms with the effects of excess histamine but won’t help the other chemicals released in mastocytosis. Medication to address that may be needed. A doctor versed in mastocytosis would know. There’s tests that can be done to diagnose mastocytosis according to Dr Joneja. I don’t know how you would find a consultant in the USA as you say hard to find a doctor that knows about it. Maybe an allergist? I’m in the UK but guessing same problem of finding doctors that know about MCAS and histamine intolerance.

Dr Joneja’s info on Histamine Intolerance,

histamine-sensitivity.com/

Specific info on MCAS, mentions needing further appropriate medications at end of article,

histamine-sensitivity.com/h...

Hope that’s helpful.

[CTucker in reply to Researchfan]

That is helpful. I love Dr. Joneja’s work. I’ve read quite a bit by Dr. Afrin as well. I’m trying to eat as low histamine as I can. It can be difficult with meat because of freshness, but as long as I eat as low histamine as I can with other food groups, it seems to be ok. I’m not reacting to high histamine foods directly, but there does seem to be a possible build up effect. I take quercetin twice a day to stabilize the mast cells as best I can. One thing I stumbled across is that B Vitamins can create a histamine overload for some people. I’ve stopped taking it and have already noticed some improvement in the tremors.

[Researchfan in reply to CTucker]

Hi. That’s great. Well wishes to you. I will be sure to look up Dr Alfrin, thanks.

Yes, I read about B vitamins too and have to be careful as taking B12 and folate.

I should have said, I find a low histamine diet helps alleviate symptoms a lot when followed strictly, plus antihistamine when needed. The build up effect you say is true regards no direct reaction to high histamine foods. I love Dr Joneja analogy of a personal histamine threshold and a ‘histamine bucket’ needs to fill before symptoms.

Personally my ‘histamine intolerance’ (self diagnosed) mainly manifests in dysmenorrhea (severe menstrual pain). There’s no official diagnosis for histamine intolerance that I’m aware of, but one way is to follow a strict low histamine diet (Dr Joneja recommended and the Swiss interest group list of foods), and if it histamine the culprit symptoms are relieved quickly within 2-4 weeks. It’s important to eat plenty of the allowed foods to ensure complete nutrition and not lose weight. This was my downfall at first. Histamine intolerance itself is linked to low weight and I find it hard to gain healthy weight. I do wonder about mastocytosis MCAD personally and my own symptoms. I recently found out allergic to wheat, soya and other foods. Allergies also add to the histamine load, and need to be taken into account regarding histamine and the “bucket of water” analogy, and threshold when symptoms appear.

X

[CTucker in reply to Researchfan]

So true. I also have a problem gaining healthy weight. One of the symptoms that plagues me at the moment is low appetite. I just eat as much as I can when I can. I’m trying to be as strict as I can be with the low histamine diet. I know it will help reduce the load while my body clears out the overload I accidentally created with the B vitamins. I would say usually I don’t have a problem with high histamine foods, at least I never noticed it before.

[nellie237]

Hi,

I'm sorry I don't know anything about MCAS. I have seen posts here though and read links......the detail I can't remember, but I do remember thinking that it should gain more interest in the mainstream medical world. Also comments I've seen about the vagus nerve were interesting.

I did a quick search on here for MCAS, and there seem to be a few posts in The UK Mastocytosis Support Group, although you may not be able to access from the US.

The tremors and convulsions sound quite frightening, and I hope they subside for you.

Sending you hugs 🤗🤗