histamine intolerance after menopause

Congratulations on doing so much self-observation and research on your own so far.
You said something about your dietary restrictions making it difficult to eat out and travel. Is there a reason you can't avoid these things? Do you have to travel for work?
Also, what are the symptoms that you are still having 'every single night'?
What specialists have you consulted so far?

Actually, the dietary restrictions are not a small thing. Yes, I am unable to participate in work lunches and social events and don't know what I would do if I were required to travel. I was also unable to eat out on my birthday, Thanksgiving, or Christmas. It makes social and family events awkward. I have always wanted to see the world, but now travel tours are pretty much out of the question. It's not like at age 59 I am ready to just knit in an armchair! Another things is worrying what I would do in if I ended up in the hospital and had to eat, since the first reflex of medical personnel seems to dismiss my symptoms.

The symptoms every night are this: I am fine as I lay down but within a 1/2 or hour (just as I am falling asleep) I get a heart palpitation and my left ear starts ringing. If it's not too bad I can get back to sleep but then I will often wake up later with my ears ringing, flushed, and with my left ear bright red. Usually I am also congested. When it was really bad I was up 1/2 the night with the tinnitus (which was pulsatile -like a steam locomotive in my head -or very high pitched). The only thing that can calm it down is benadryl or propranolol. (It's not just that the bendaryl helps me sleep: if I get enough histamine during the day the same things happens and the benadryl also works.) I wake up in the morning and there is usually some ringing but after an hour or 2 it's gone, unless I eat more histamine. The symptoms go up and down with the amount of histamine that I eat during the day but they never completely go away.

I have been to 4 allergists, 2 gynecologists, a cardiologist, and several primary care doctors who all either dismiss my symptoms or have no idea what to do. I had to push to be tested for celiac disease and carcinoid syndrome. I tried HRT but the estrogen made it much worse. My trust in medical doctors , initially high, is at an all time low. I am a physical scientist myself and astonished at the utter lack of response.

My thought that my estradiol might be too high comes from figure 2 of the paper "Baseline estrogen levels in postmenopausal women participating in the MAP.3 breast cancer chemoprevention trial".
It looks like only 1 to 2 % of postmenupausal women would have estradiol greater then the 17pg/ml that mine came out to be. Interestingly, that is about the percentage reported to have histamine intolerance -at least in the ballpark.

I have an appointment at Barrow in the Headache Program because my symptoms do resemble a cluster headache disorder. It will be interesting to see how that goes. Cluster headaches were once thought to be caused by histamine and this seems to be a classic case.

Thank you so much for your attention to this. I need all of the help I can get.
Beverly

I typed in how to lower prolactin post-menopause and this is the first site that came up:
https://www.composednutrition.com/blog/lower-prolactin-naturally#:~:text=%2B%205-Day%20Meal%20Plan%201%201.%20Balance%20Blood,8.%20Rule%20Out%20Pituitary%20Tumor%20...%20More%20items
sheepish admission: I haven't read it!

I hope you get some answers at the Barrow Headache Program. Unfortunately there are so many things that are still a mystery to science, partly, in my opinion, because we are all rather individual, and I agree with you that sometimes you need to be your own principal physician, because no one else lives in Your body.

Hi, Beverly! Well, I think I have the same or similar situation as you. I’m 56 and about 3 years post menopause. I also can not eat high histamine foods now either. What has helped is changing my diet. It’s tough, but now i have no dairy, no gluten, no wheat, no processed foods, no (or low) sugar and I try and eat organic, nom-gmo as well. You may benefit from a probiotic called histamine-X probiota (or something like that…I’ll check for you.). You also could have a food allergy panel too. I also take progesterone cream, DHEA cream and a little estrogen cream…these help me a lot! I use to eat lots of processed carbs and sugars and i was quite overweight and insulin resistant. After cutting those food items out of my diet and intermittent fasting, I’ve lost 25 pounds. Anyway, this whole world now post-menopause is not easy at all! What also helps me with breathing at night is a good air filter in my bedroom. I do find the dry air here in Phoenix, AZ hard on my nasal passages. I grew up in NJ and Florida…boy i miss the humidity! Also, there’s a low-FODMAP app that i follow as well, that might help you too! Lastly, try to find a good naturopathic doctor near you. I see them here in Arizona, which can really help as well. Of course, i also love, love, love all of my Mayo doctors, but sometimes a tincture or homeopathic remedy helps me a lot as well!! Hope this was helpful to you! Sending you prayers and hugs for healing ❤️‍🩹 and great health ahead!! Mia 🎉😎💕

I have been struggling with this for over a year. It has turned my life upside down and I have tried everything. Early on (while I still had GI symptoms) I believed I had SIBO and tried the low FODMAP diet. If you are cannot eat foods with histamine, low-FODMAP is pretty much everything else and there is not much left to eat. Fortunately, this did not help. After extensive investigating I have concluded that I am not reacting to FODMAPs, gluten, or anything else besides histamine. The HistamineX probiotic did not help (neither did DAO supplements). A recent gut microbiome analysis revealed excellent microbiome diversity and no histamine producing bacteria. This makes sense since I currently have the digestion of a 20 year old after not being able to eat processed foods or in restaurants for over a year. I tried a naturopath and nothing useful was offered.

I have inventoried the medicines and things that make the condition worse (or at least have not helped) or better. The results are:

What makes it worse:
Histamine in foods, exercise, estrogen, antihistamines (other than benadryl), flecainide, montelukast, cyproheptadine, and trying to sleep (It always starts when I am lying down to sleep, even for a nap.)

What makes it better:
Benadryl, propranolol, progesterone, diclofenac.

This follows the exact pattern one would see for raised prolactin. The temporal pattern is also consistent -it is OK in the morning and gets progressively worse in the afternoon and evening. Both my estrogen and FSH seems a bit high. I am awaiting the prolactin results. My guess is that I gave either a small, benign pituitary tumor, or the fibroids that were discovered at menopause are still there and secreting. Histamine causes the pituitary to secrete prolactin and so that might just put me over the top. My belly is chronically bloated but I don't have gas, fat on my thighs or buttocks, or digestive discomfort.

In every other way I fell 100%.

I just stumbled across this somewhere else. I'd never heard of it before:
https://www.healthline.com/nutrition/dao-supplement#what-it-is

Thank you. I did try the DAO supplements and they were not effective. I have tried everything! I did get the results back from the prolactin blood test and it doesn't seem way out of range. A re-check of my estradiol (with a more sensitive test) revealed it to be normal. I have been experimenting with melatonin and it may be helpful. Also, I may have had covid. An antibody test shows I had it and this thing got really bad after I thought I had a really bad cold last spring.

My take-away from all of this is that I should be glad that I am happy and healthy in every way. I can adjust my eating habits, use the progesterone. The condition seems to be getting gradually better over time. Hormones are mysterious things: scientists and doctors don't really know that much about them. Doctors should do a better job of listening to their patients.

Thank you all.

Congratulations to you for how well you've done your own detective work and research and experimenting to find out what works for you!

I had my appointment at Barrow on Tuesday. The neurologist and medical student assisting him were thorough, kind, and professional. I cannot recommend them more highly. My headaches are "not of neurological origin". They are monitoring my situation and in the mean time we are encouraged that my symptoms have been gradually declining. Obviously, for some reason I am not tolerating histamine in foods. This has been a long journey for me, I have learned a lot, and I would like to post some what I have learned for the benefit of others who may be going through the same thing:

1) Doctors cannot order tests if there are no accepted criteria for what the results should be and what they mean. Also, oftentimes levels of things in the bloodstream change rapidly and they cannot be captured adequately.
2) Doctors cannot diagnose if there are not currently accepted diagnostic criteria for a condition, or treat if there is not known treatment plan.
3) Just because 1) or 2) are true does not mean a condition does not exist. There are just limitations to what doctors can do in certain situations.
4) I wanted to be open-minded and I was desperate so I did seek help from a naturopath, and a couple of practitioners who were into a functional medicine approach. In all cases the advice I got was miss-guided and/or dangerous. It's nice when someone spends time to listen to you (and BELIEVES you) but that does not mean they know anymore about your condition than a medical doctor or that they know what to do.

Science and medicine advances slowly and deliberately, and it is inevitable that people will come down with conditions that are not well-studied yet. That's life. I advise anyone in this situation to be persistent and thorough: write down the list of foods, and precise symptoms. Keep trying until you find someone who will listen to you. In the process you will learn a lot and those doctors who care and come in contact with you will learn something as well.

Hi! I am about six years Postmenopause, 54 years old, and about this time last year, I started getting severe hives for no apparent reason. I could not get into an allergist in my area for several months. I got an appointment at Mayo within three weeks. I was so pleased with the care I received at Mayo, a food allergy test showed I was not allergic to any food. The doctor diagnosed me with chronic idiopathic hives, which is a frustrating diagnosis. I take two 180 mg Allegra daily, one in the morning and one at night. It has kept my hives away for about nine months. I never thought of an allergy to histamines, but I would think that would come up on the food allergy test. This thread is interesting to me and I’m going to look at the articles posted in the different apps. I hope you continue to get better and better!