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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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There are experimental tests for research that you can get in Europe or research labs called ELISA. Insurance will not pay for it. The US is very much behind in histamine intolerance awareness and research.
Also, stay away from the DAO supplements that people hawk. There is not near enough in them to do much and they could even be harmful in the long term.
There is a very good recent research paper out on histamine intolerance from reputable German and Swiss allergists and immunologists that sheds a lot of light on why this is so hard for doctors to diagnose or do anything about. I think of it as the "last word" until more research has been done to establish causes, tests, and treatment guidelines. It is called "Guideline on Management of suspected adverse reactions to ingested histamine" by Reese et al, in a German journal (I don't have the translation but you can google it), published in 2021. You can find some pretty solid information there.
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Beverly
Thank you very much. I will look into it. I have learnt so much just chatting with you and I thought I had read a lot. I can see now that there is so much more to learn. Thank you again for your input I really appreciate it.
Yesterday I had to go to Urgent Care because my left thigh was covered in patches of bright red and my heart rate went to 128. The episode lasted for several hours. As always, the EKG was normal. The most likely cause was 2 bottles of bottled water with "minerals added for taste" that I had unwittingly consumed at an event. I had a severe reaction to it last year, but the episode was so surreal that I have since just thought it must have been something else. (In that event, I had heart palpitations and ear ringing for hours that started immediatley afterward.) Well, it is now confirmed. I think that if a reaction occurs from a substance that contains no histamine, it's be because it stirs up histamine in mast cells from the gut. A "normal" person would not notice because they would have enough DAO to clear it. These reactions seem worse than those from foods, especially if they are from liquids.
I am so sorry to hear that. I hope you are doing better. I'll be alert about drinking water with " minerals" or other enhancers. I am almost sure that I have low DAO, specially since I have SIBO. I've been reacting to some many foods that are high in histamines as foods that are histamine releasers. I wish I could have my DAO measured, if there would be a test. I read that it's very hard to either measure histamines in the body as DAO. I have read that in Madrid, Spain , They are more advanced in all these studies.
The mineral water thing is strange, and it tends to happen with the cheap bottled water labelled "minerals added for taste" that you get at the big box stores. The first reaction happened when I was in much worse shape overall: my ears rang and I had heart palpitations for hours. I don't know what ingredient is doing it but it could be sulfates.
Early on, when I had a lot of bloating and functional diarrhea, I read about SIBO being a cause and thought that I might have it. But when I got off most of the foods the gut issues went away. Oddly, my digestion is better than it has ever been. I can eat a plate load of garlic, onions, and peppers and don't even pass gas. That's why I think that B6 deficiency is the likely cause in my case. Anyway, you can get tests in the use for SIBO and some gastroenterologists actually treat it. That is probably your best bet.
Vitamin B6 is essential for DAO production. So maybe that will help you too. I have had 3 tests of SIBO already. All positive. I have been in FODMAPS diet, and one month only with the Elemental Diet. My SIBO test after this last one, was still positive. I am looking for a specialized doctor in Miami that treats SIBO. Some doctors look at you like you are crazy when you tell them that you have SIBO.
Yes, I know about the B6 issue. If you look a little further back in this thread (I know it's pretty long), you will see that I think I probably got this by being on oral contraceptives for 5-7 years and then going on a disorganized vegetarian diet. No way to go back in time and prove it although the circumstantial evidence is pretty overwhelming.
Here's what I have learned about dealing with doctors: Do NOT go to a doctor and tell him/her that you think you have SIBO, especially if you have been using tests kits from a naturopath, functional medicine doctor, or online. Just go in and explain your symptoms. If you are really sure that you have SIBO you it will be frustrating and you will have to be patient while the specialist goes through the normal treatments for the more common gastrointestinal elements. They are aware that SIBO exists (it's described on the Mayo Clinic website), it's just not common and doctors hate self-diagnosis.
Yes, you are completely right.