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histamine intolerance after menopause
Just a few months after menopause I got a strange cluster headache (it was like being electrocuted on one side of my head every few seconds) that lasted for days and would only go away after an ER visit and prednisone. Prior to the headache my ears were ringing, I had rhinitis, my ears would start to itch in the evening and my blood pressure was low. I thought it was a one-off but then it repeated 1 1/2 years later on the other side.
Accepting that I had a chronic migraine I put up with tinnitus on and off in my left ear. About a year ago I got chronic diarrhea and gastric reflux. I thought they were unrelated until the symptoms got so bad that I noticed there was a direct connection between the symptoms and eating food with histamine. Basically, within minutes of eating the food, my left ear itches, then starts to ring, and my nose runs. The same night I will have heart palpitations while falling to sleep and then pulsatile tinnitus during the night. I wake up every morning between 3 and 5AM flushed, with my ears ringing and nose running. I also get rosacea, eczema, (and now dermatographia), which correlate with the histamine reactions. Benadryl is very effective in aborting the reactions but other antihistamines don't work or seem to make it worse. Propranolol also works but I don't like taking it because my blood pressure is already low.
I could get no help from doctors and specialists. Now a year later (on a low histamine diet) I am free of the diarrhea and reflux but still cannot eat histamine. I talked a gynecologist into measuring my estrogen level and it came out to 17 pg/ml, which strikes me as very high for 5 years past menopause. I started on progesterone cream and used a lot ( a blood test confirmed that I had increased my progesterone a lot) and for the first time my symptoms abated.
I am still trying to figure out what is going on and what I should do. I am not sure I should keep using so much progesterone. Also, I have recently noticed that my symptoms are consistent with high prolactin levels. That is why benadryl, propranolol, and progesterone all seem to work but other antihistamines don't (if my guess is correct). An MRI has shown a normal pituitary.
I read that this could be caused by gluten sensitivity, although I don't seem to be reaction to gluten. My current plan is to go cold turkey on gluten, histamine, and progesterone and then measure my prolactin. Then add the histamine, and gluten back individually.
Any help would be greatly appreciated! This has turned my life upside down. I am unable to eat normally, in restaurants, and travel is difficult. I continue to have the "migraine" symptoms every single night.
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I have some more information:
First of all: I am now taking a dopamine agonist that seems to be helping the TIDA neuron exhaustion issue. My symptoms are way down at night and my histamine intolerance has increased (especially if I douse symptoms with 100mg liquid vitamin C).
I have been doing some more research on histamine and the brain. It is awesomely complex so I am not going into detail or arrive at any specific conclusions. I am just not qualified. Suffice it to say that there are many different histamine receptor types in different places and some monitor the histamine in circulation and relay that information to the brain, which adjusts accordingly. The entire system is highly adaptable.
There have been some studies on low histamine diets done on mice. There were effects. I don't know how well it transfers to humans but I found it not encouraging. I think people should just not be going on low histamine diets to see if they feel better from other things. People should not be recommending them for anything.
Looking at the complexity and adaptability, I find it very plausible that my current symptoms are from the low histamine diet itself, and no longer from DAO deficiency. Histamine sensors can become sensitized/de-sensitized and grow more or less numerous in response to histamine signaling. It's possible that explains the acuteness of my histamine sensitivity today.
My current plan is to use the relief I am getting from the medication to slowly increase the histamine level in my bloodstream. It was recently measured to be quite low -probably from the low histamine diet.
I am doing very well on the dopamine agonist: My histamine tolerance is way up and my symptoms are down. I am still having trouble with foods that cause sharp rapid histamine rises: A spoonful of yogurt on an empty stomach significantly increase the symptoms, but even that was less intense than usual.
Early on in this thread I posted that a long period of oral contraception use followed by a disorganized vegetarian diet probably caused my condition though a vitamin B6 deficiency. I looked into more studies on the mice that were genetically altered to have no L-histidine (a histamine precursor) and put on low histamine diets. It significantly altered brain H2 expression. I recently found out that B6 is not only necessary for DAO to work, but it is necessary for L-histidine to work. So the oral contraception would have been a double whammy to my histamine system. It would have taken months to recovery -even if I knew what was happening. As it happened, it took years of symptom recording and research to find out.
I feel like I know enough now that I can be strategic instead of tactical, and that I am on the road to recovery. The irony is that a doctor -just throwing oral contraception at me and leaving me unmonitored for 7 years without any warnings - helped create a condition that doctors in the US don't believe in. Of course (just like there is no reliable test for histamine intolerance) that cannot be proven.
I now have a core team of traditional medical doctors (MDs) involved in my care. This took a long time, but it was worth it. Naturopaths and Functional Medicine doctors just advise people with a bunch of symptoms miscellaneous to try low histamine diets, which can be dangerous. They stick to the usual foods and supplement regimens posted on websites and handed down from one to the other. It is time for fresh thinking on "histamine intolerance".
A word of advice when interacting with doctors with this condition: Don't say "histamine intolerant". "Histamine" is a trigger word for them. Just describe your symptoms and say it seems to be triggered by "certain foods".
Good luck and all the best to anyone struggling with this.