histamine intolerance after menopause

I would like to report that I have had a severe relapse because I got ahead of myself and tried to eat an entire 3oz can of tuna. I was also on a PPI, which made it worse (more on that later). Within 30 minutes of ingesting the tuna my ears started to ring. The ringing got worse throughout the day and then a big red blotch broke out on my nose. By evening I was still having symptoms despite 120 mg Allegra and was getting flushing and heart palpitations. It took another 50mg of benadryl to diminish the symptoms enough that I could sleep. The next day the blotch on my nose was bleeding and I had other smaller red spots on my face. I have been having nighttime symptoms for 3 days running.

I had been doing so well! I guess I was really enjoying eating (almost) normally and wanted to be cured so I got over-confident. About the PPI: One thing that was odd about the nearly 2 years that I since the histamine vascular symptoms started, any trace of stomach acid problems miraculously vanished. This has been a really hard sell to to practitioners (esp. alternative ones) who would just not hear me when I told them I was having no GI symptoms. I did not so much as pass gas! I have a theory as to why this might be but since I am not a medical doctor I'm not going to put it down here. But I only have GI symptoms or vascular symptoms, never both at the same time.

As I started to recover from the histamine intolerance, interestingly, the vascular symptoms started to go away and the acid indigestion returned. It was like watching a clock run backward! So I decided to try a PPI. That's when things went downhill. I've done some research and it looks like PPIs can increase histamine in the gut so anyone with histamine intolerance may want to watch out for it. When I ate the tuna, everything just exploded. I think I had a similar adverse reaction to Pepcid a couple months ago but I wasn't as sure about it.

For anyone dealing with these issues I would like to write what has (and has not) worked with medical practitioners: Going to a medical specialist with all of my ducks in a row; lists of foods; symptoms, timelines, etc, has by and large not worked (except at Barrow). Doctors seem determined to dismiss symptoms like these and declare them psychological or exaggerated. I had one ENT tell me to just "turn on the AC" for the tinnitus (I could hear it at a rock concert) and "try a vegetarian diet" despite having showed him all of the triggering foods and the other symptoms.

What works better is to be tactical about it: When a reaction is actually happening, go to urgent care or a video care app (if you are lucky enough to have access one) and describe the symptoms and what you just ate. For example, I said "my ears are ringing, and a big red blotch broke out on my nose 30 minutes after eating a can of tuna". You will get a nurse practitioner or PA who is much nicer than any doctor. The usually response is something like "you seem to be having an allergic reaction", even though you are not and it's impossible to be allergic to to tuna (and they should know that being a medical professional) but never mind. It's better than the usual response from doctors and I have learned to be grateful for small victories.

At least I get some response and some medication for the breakout. It's also a way to record what is happening to me and getting it out there to the medical practitioners where they can become more familiar with the symptoms. I think too many people with this suffer in silence.

For anyone who still may be following this:

I guess I got over-confident again and over-reached; Or maybe I just had to see what would happen; Or I just got tired of not being able to eat normally; I was hungry and away from home and other food options. Or maybe it was 18 months of internalizing the gaslighting from doctors. Anyway, I ate a rotisserie hot dog at a food stand (with mustard). Within 30 minutes my nose ran and I began to itch all over. I should also mention that I was trying doxycycline for the rosacea (a known DAO blocker). One of those 2 things or the combination started the TAC headache. This is where it all started: I got a mysterious headache in 2018 after a period of ears ringing and itching, and my nose running. At that time I had no idea there was histamine in food, did not believe in food triggers for anything, and had no history of headaches.

The headache resembles trigeminal neuralgia, except the pain is not in my face. First my eye felt like there was something in it and electrocution like shocks or jabs started above my right eye and around my skull in that area. The tinnitus is loud and pulsatile. The jabs become more and more painful and closer together until it is excruciating and can only be stopped with a course of prednisone.

Thin blue lines (like ink marks) spontaneously appeared and then receded on the inside of my right arm. Probably a form a dermatographism -but alarming still. I got the usual gaslighting and dismissive manner from a medical practitioner on the other end of an urgent care video chat. I even got the condescending smile that one gets when they are certain that you are just having and anxiety attack and it's your "anxiety".

So I am recovering on prednisone but I learned a lot about the symptoms. I don't regret it.

Yeah, I do not trust most food that I've not prepared myself, from whole natural ingredients, to at least have some clue what is in it. Histamines or no.

I'll take my boring oatmeal and let everyone else enjoy whatever they please.

They are taking care of me at Barrow for the headache and I cannot recommend them too highly. They are doing everything they can withing the bounds of professionalism. They do not seem to be into gaslighting. I am also appreciative of the allergist who diagnosed me with chronic urticaria. He listened and I know that it was the best diagnosis he could make.

As for the rest: I doubt they entered the profession with the intention to be the way they are. I am sure they started out wanting to help people. I suspect that it's not so much them, but a profit-driven, efficiency-squeezing system that allows most physicians to spend only 15 minutes with patients. There is know way that is going to work to convey anything except a few cookie-cutter conditions with obvious symptoms. It must be disheartening.

This is has been a good experience for me, because now that I am entering my 60s I am likely to get sick in other ways. I won't be as naive as I was about our medical system. I used to think that it was great and all of the doctors were like House. Now I know to be on my guard. There is nothing more dangerous than thinking that you are safe in a dangerous system. It's just not a good system anymore. Dr. Google did better and that's really pathetic.

I have recovered from the headache and am back about where I was before on the histamine intolerance. That is, I am recovering slowly. I clearly over-did it with the rotisserie hotdog. But I learned a lot! For example, I learned that all that noise in my ears is from the vasodilation impinging on my cranial nerves, which are close to my ears. The reason it gets so bad as soon as I lay down (and at night) is that it alters the blood flow in that region and the blood vessels relax further, making everything worse.

Since I have such an acute an obvious case of histamine intolerance, I have done a lot of research and made a lot of observations that could help others: One important area is regarding the lists of foods. It's known (and also an active area of actual medical research) that histamine intolerant people report reactions to a wide range foods, many of which do not actually have histamine in them. Well, I have solved that puzzle: The main effect of histamine in the body is to provoke vasodilation (through nitric oxide). If you eat something with histamine in it (and you are histamine intolerant) you will get that vasodilation. If you then consume ANOTHER VASODILATOR, that will worsen the symptoms. A great many healthy foods are natural vasodilators, and appear on lists of non-histamine foods causing reactions.

I found that if I avoided the foods that actually have histamine in them I did not get the vasodilation. Then I could eat the other foods! I greatly expanded my diet that way.

Hope this helps anyone else struggling with this.

Beverly

Congratulations, and thank you for doing all of that sleuthing and posting here to help the rest of us! I have heard of other people advocating low-histamine for migraine prevention. It makes sense to me.

I would like to comment on the issue of caffeine and histamine intolerance:

First of all, a molecule cannot "contain" another molecule so if you come across a site that claims caffeine has histamine on it just don't pay any attention to it. It's the kind of lazy thinking that has propagated a lot of false claims regarding it and is usually on sites trying to get you to pay a lot for services or supplements.

Coffee itself can contain biogenic amines, depending on it's quality. I have had reactions from cheap diner coffee, but I have had nothing but good effects from the coffee that I purchase as whole beans, and then grind and prepare at home. I have been on and off coffee several times during the course of this to note it's effects and my conclusion is that it is the most helpful tool in my fight against the reactions. This makes sense when you consider that:

1) It's a vasoconstrictor
2) elevates both cortisol and adrenaline -both of which help clear histamine from the body (although I am not sure the exact mechanism)

Another myth you might come across is that the histamine will get into your brain and make you crazy! I would like to assure you that histamine in the bloodstream does NOT cross the blood brain barrier. Other effects of histamine intolerance: medical gaslighting, adrenaline from the histamine being ejected into your bloodstream after eating, changes in blood pressure etc. might make you feel "crazy" but histamine getting into your brain is not one of them.

It has come to my attention that my nighttime symptoms are more likely from acetylcholine than directly from histamine. To review, my nighttime routine goes like this:

1) pretty much OK as I lie down to sleep
2) Just as I drop off to sleep 4 things happen simultaneously: i) I get a sleep-start or heart palpitation of some kind ii) My ears start ringing iii) My left foot goes numb iv) I have to pee -suddenly v) my ear itches or even hurts
3) I will usually drop off to sleep (if it's not to loud) but wake up at intervals with my ears ringing and having to pee. My face is bright red. I often have a feeling of well-being and go back to sleep easily
4) Wake up in the morning with my ears ringing and a rosacea breakout. There are lines across the skin on the insides of my arms. Sometime throughout the morning I will have a diarrhea dump.
5) Symptoms subside in the morning (unless I eat more histamine) and feel very focused and energetic despite having been woke up several times throughout the night.

After bad attacks my ear will ring throughout the day and there will be a burning feeling in it. I can break out into hives.

Well, it turns out that the vagus nerve (which releases acetylcholine) is connected to the ear, and all these symptoms are from acetylcholine release. That's probably why benadryl works so well -it targets the muscarinic receptors. I have been referred to Mayo for dysautonomia testing (at least somebody is doing something!)

There is a mechanism by which histamine in the gut could cause this: unless I am interpreting it incorrectly, the paper "Histamine via histamine H1 receptor enhances the muscarinic receptor‐induced calcium response to acetylcholine in an enterochromaffin cell model", which can be found on PubMed.

I got a very good reduction in symptoms from claritin, which also influences those receptors. I am trying to see if Allegra will work if I am more patient about it.

BTW, I have noticed a variety of functional medicine and quack websites dissing antihistamines like Allegra and Pepcid as DAO blockers. This is simply not true and very irresponsible. Do your own research (in medical journals, not functional medicine blogs) and you will find out.

Good luck to anyone suffering from this.
Beverly

I am still recovering -slowly. I am now able to eat anything except things that are actually fermented (unfortunately, this still includes a lot). I feel great. Probably because I have a lot of vasodilation, my B6 is up, and I still can't eat processed foods or in restaurants (except for red meat with no sauces). I am learning to cook! I still have a few accidents: I had a bad reaction to homemade yeast bread. When I am over this I plan to eat foods with as much histamine as I can tolerate. I am not an advocate of low-histamine diets which (as I have demonstrated) can lead to malnutrition. I think some histamine is healthy.

Hi,
I am in shock to read your experience. I have almost everything you have. OMG!!! It started last year after I had a bad infection of COVID 19 that sent me to the hospital. I even had hair loss ( after 9 weeks of Covid).
I am 59 and menopause for the last 8 years. I had noticed some of the symptoms after I didn't have my period anymore but I still could eat a lot of foods and had some wine but it got really really bad just right after Covid 19. I couldn't eat anything without having this horrible migraines, very congested sinuses (like when having sinus infection), itchy ears, burning sensation in the body during sleeping, tinnitus, itchy skin ( like ants crawling under my skin) nausea, palpitation, a lot of urination during the night. I would have all these symptoms at night that would start between 2-4 am. I noticed that I would get them when I ate foods high in histamines. I am Italian descendant so you figure: Parmesan cheese every day, coffee, tomato sauce almost every other day, cold cuts, bread, cheese, chocolate, dry fruits, etc. I was told that I had SIBO by a neurologist that performed the test. I was put on the FOADMAP diet. I even did the elemental diet and lost 18 pounds. I am a thin person, always been. So after loosing all that weight I looked sick. The SIBO didn't get better. So I decided to eat the foods that I saw weren't too bad for me: I eliminated all the foods I mentioned before from my Italian diet, I also eliminated all alcoholic drinks. I had the situation somehow controlled but after Covid I noticed I couldn't eat even healthy foods I could eat before like avocados, plantains, any kind of fresh cheese, yogurt or any fermented food: Mustard, pickles etc. So I just ate fresh proteins and vegetables. That's it. If I delve outside this list I would wake up around 3 o 4 in the morning with itchy skin, very very congested like my head it's going to explode, itchy ears ( with liquid ). I cannot breathe through my nose. So I take sometimes Benadryl and use Flonase to decongest my nose. Of course I never sleep the whole night so I'm super tired next morning with a weird sensation after taking strong headache medicine. It's been a horrible year. I can't remember having so many migraines in my life.
After having my daughter I would get the same symptoms I have now, but 2 days before my period. and it would go away until my next period. My OBGYN said that it was normal and that when I hit menopause my headaches would disappear. But here I am 9 years later having migraines like 2 or 3 times a week. So that's why I think my migraines are related to sex hormones since I always had them before the period. I have read that is the estrogen. (when the oestrogen level is too low ) you get headaches and other symptoms but they don't explain why. I don't know. That's why I was fascinated with your explanation. You seem to understand what's happening. I am an engineer so I don't know that much about medicine. I haven't found a doctor that believes me let apart help me with my symptoms. I've been to 2 Neurologists, 3 Family Doctors and 1 Functional Doctor. I've was given antidepressants by 2 doctors. I've given 5 different medicine for migraines. I don't know what else to do. It's like my life it's upside down. I try to eat all the time at home. I rarely go out but of course it's hard when you travel. I try not to eat at night or very early very light dinner. I am afraid of eating sometimes, to be sincere. Uffff If I just could sleep eating would be nice.
I'm glad to hear you are getting better; that keeps my hopes high.
Bye