Histamine Intolerance (HIT) and AIs

Going through breast cancer treatment Hormone therapy
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Hi everyone.  I don’t expect much traction on this one but thought I’d ask as I can’t see anything on a search of the forum.

I’ll try to be brief.  Had “normal” migraine before menopause, after menopause (2009) had migrainous episodes but with mild headaches  plus vertigo.  Was diagnosed with vestibular migraine.  Kept happening on and off for years, was then re-diagnosed last year with migrainous neuralgia (not really sure it is, to be fair).  The episodes which include severe brain fog, cognitive impairment, giddiness, digestive issues and runny nose, lasted 10-12 days and would then dissipate for up to 4 weeks but were very debilitating and scary. 

Since taking Letrozole for 15 weeks, this syndrome is now permanent and completely debilitating (and even more scary).  I went to a GP on Friday for referral to private neurologist so she can do every test necessary in order to get a definitive diagnosis.  Also for her opinion on the impact of AIs on the brain/cognition.  Apparently I will also get a dementia test (eeek! ?)  For full disclosure, I was told to stop taking Letrozole by my oncologist on 13/02 and put on Tamoxifen instead.  She is well aware of the impact of Let on my brain and has flagged it to my GP.  I won’t take Tam, certainly not before further investigation, and probably not at all.

HOWEVER (finally getting to the point) the GP said it all sounds like an intolerance to histamine which, as well as being produced in the body, is also found in many foods which, in turn, is not dealt with in the gut because of a deficiency of DAO (diamond oxaidase).  I have been advised to go on a low histamine diet for 4 weeks to see if it makes any difference.  No-one I know has heard of histamine intolerance but on researching, it is definitely A THING. 

Anyone know of this?  Had it? Found  effective treatment?

I’m still convinced that the Letrozole is having an adverse impact on my cognitive state as it has declined rapidly and immediately on taking it but IF it is this allergy/deficiency, which has been causing issues even before the BC dx maybe, just maybe, I can control the impact and possibly start the AI again.  

Many apologies for long - and probably pointless - post!  Best wishes to all.

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Hi, ive been on Tamoxifen for 3 months, ive had several side effects of which blocked nose is impairing me to sleep. The days i use some inhaled corticoids is great but i cannot use it on a daily basis. I also have terrible brain fog and i go through life like a zombie

Ive noticed my nose gets very blocked the days i eat cheese (im cheese lover) or kombutcha. I suspect that i either have histamine intolerance or that Tamoxifen is making it worse, but doctors dont give a sh… so i will try taking a DAO pill to see if it improves, will keeep u posted in case it may help someone else. There is indeed not much information on histamine and tamoxifen.

Thank you so much for bringing up this topic!!!

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Hi Tigress, I know this thread is old but I wondered if you had gotten to the bottom of your migraine issues and if you’re any clearer on whether a histamine intolerance or buildup is the cause??
I’m going through something similar… about 3 weeks ago I got sinus pains around my left eye, bridge of nose and horrible headaches. For the most part my nose feels dry but sometimes starts spontaneously running for 10 mins only to dry up again. I have a lot of pressure around the eyes and they feel dry. I’ve had a course of antibiotics in case it’s a sinus infection but they don’t seem to have done anything.
I been doing a bit of Googling and histamine intolerance came up as a possibility.
So tired of the constant pain!
I’ve been on tamoxifen for 3 years.
Has a DAO supplement helped you?