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.
Interested in more discussions like this? Go to the Women's Health Support Group.
One thing I would do is stop taking the propranolol. Beta Blockers don’t directly raise the histamine level in your blood like some other medications do. But they lower the threshold at which your mast cells degranulate. Basically it makes the cells that contain the histamine more likely to dump it into your bloodstream. I got very sick before i figured that out!
Progesterone is a mast cell stabilizer, which is why your symptoms got better on it.
Benadryl is helpful but not optimal long term so hopefully you can find other interventions that help!
Estrogen is a histamine liberator, so it’s interesting that it got worse AFTER menopause. I would check all your medications for how they impact histamine levels before you do anything. This was the most invaluable step for me. I would ditch food dyes (even in medications) because a lot of people (myself included) have histamine reactions to them.
I agree with removing gluten from your diet. Dairy is another common cause of inflammation. Low histamine diets are very hard so i typically suggest everything else first, but I get that you’re struggling!
One last piece of advice is to get genetic testing done to see how you metabolize medications. I found out that i don’t have a couple of important liver enzymes that metabolize common medications. That might be why you can take Benadryl but have literally no effect with another. You might not have the enzymes necessary to be able to process it.
This is also important because I’ve found sources that say if your liver can’t process a substance (because you don’t have the enzymes) it can cause an increase in your histamine level. In other words, you may be taking medications that are unknowingly raising your histamine level. Good luck 🙂
I am pleased to report that after 3 years of suffering I have cracked the histamine intolerance. I now know why my recover has been so slow and why I would relapse in such spectacular fashion. It also explains why my condition got so much worse and the cardiovascular and skin problems started just as the gut issues went away.
What I found out is truly astonishing: The 24 hour antihistamines (Allegra, Claritin, and Zyrtec) have been responsible for the "relapses" and the slow recovery. I have been suspecting them for some time but had to have incontrovertible proof to come to such a conclusion. It really became clear after I had a bad reaction to some chicken that I accidentally stored in my fridge at 47 degrees (it caused 2 urgent care visits). I took 2 Claritin and it was WORSE on the 2nd day! I couldn't understand. I thought the reactions lasted 1 week because I would have to slowly wean myself off the antihistamines for that period when I took them after an attack. Turns out they only last 24 (in some rare cases 48) hours if I just take Benadryl. Things became obvious when I tried Zyrtec. Zyrtec worked really well at first but then things really deteriorated and I was getting red blotches and hives even without eating anything. I suddenly could not eat bananas, chicken, tomatoes, walnuts, and cashews when I could eat them before. When I took a 2nd one things really went nuts. I got red blotches all over my face within 30 minutes, my ears started ringing from the vasodilation, and I had to take Benadryl for a nighttime attack. I thought back to how many times I had had a severe attacks (ones so bad I could where I remember exactly where I was and what I had eaten) while on them. Pretty much every, single, time.
Since the antihistamines are not DAO blockers, have different molecular structures, and caused things to eventually fall apart with greater intensity the better they worked initially -I can only conclude that H1 receptor signaling in the gut is needed to release DAO. I have stopped using the antihistamines now and just take Benadryl when I have an attack; and I have been recovering weekly -almost daily! I am close to eating normally and only have attacks when I eat something really loaded with histamine (2 recent examples are from a hard-boiled egg that was left at room temperature for over an hour, and chocolate with chocolate liquor in it -which is fermented).
My guess is that I am not completely better because I now have reduced H1 receptor expression in my gut from the antihistamines and it will take some time to get that back. That also explains why my gut symptoms disappeared just as it got worse everywhere else. It's a pity that doctors would not believe me because this is a very promising avenue for research and could relieve a lot of suffering in others who have this. It could also serve as a test for it.