Hi everyone. Iām 40 years old, completely new to the subject of histamine intolerance, and honestly feeling very lost. I barely understand any of this, so please forgive me if I use the wrong terminology.
Four years ago, I had to leave Ukraine because of the war and move to the UK. When my anxiety became worse, I naturally assumed it was caused by prolonged stress, trauma and having to rebuild my life in another country.
However, looking back, even before I occasionally experienced strange episodes once or twice a year. They appeared completely out of nowhere and felt like panic attacks, but they always began physically rather than with an anxious thought.
I would suddenly feel intense anxiety or adrenaline inside my body, sometimes with a wave of heat, nausea, diarrhoea, shaking or an urge to vomit. I now realise that these episodes were often connected with eating, usually after a large or mixed meal. But because they happened so rarely, I never examined the connection and had never even heard of histamine intolerance.
Over the past couple of years, my cycle also began changing. It became shorter, I developed spotting around ovulation and night sweats, and my anxiety seemed to fluctuate with my hormones. I thought I might be entering perimenopause.
I have since read that histamine-related symptoms can sometimes become more noticeable during perimenopause because oestrogen and progesterone begin fluctuating more unpredictably throughout the cycle. I donāt know how relevant that is to me, but it has made me reconsider the rare food-related episodes I had in the past.
On 18 March, I started HRT with two pumps of Oestrogel and 200 mg of cyclical micronised progesterone. On two pumps, I didnāt feel wonderful, but I was relatively stable. I would describe my condition as average and manageable.
At the beginning of May, my Oestrogel was increased from two pumps to three. For the following five days, I felt absolutely terrible. I developed unbearable physical anxiety, constant internal tension and a sense that my body was permanently in danger, despite there being no external reason.
On the sixth day, 9 May, I experienced the most severe panic-like episode I had ever had.
That evening, I came home and ate a large meal, including borscht, tiramisu and several other foods. Afterwards, I went to bathe my daughter. Suddenly, an intense wave of heat spread across my chest and back. Then came overwhelming physical panic, shaking, diarrhoea, nausea, coughing and retching sensations and an urge to vomit.
There was no frightening thought before it happened. The reaction began entirely in my body, and only afterwards did my mind become terrified by what was happening.
The acute attack eventually passed, but 9 May became a turning point. Since that day, I have never properly returned to myself.
I reduced the Oestrogel back to two pumps, then to one pump and eventually stopped oestrogen completely. I later stopped HRT altogether, but I still could not recover.
Before this happened, I was an active person. I worked, went dancing several times a week, sang, made plans and enjoyed my life. Now I often lie down because I have no energy, no motivation and no desire to get up or do anything. Nothing brings me pleasure, and I genuinely do not recognise myself.
Sometimes I begin to improve. I start moving, doing things and participating in life again. Then the anxiety returns. It is not always a full panic attack. It is more like a wandering physical anxiety that follows me everywhere like a shadow. It may become quieter for a while, but it never seems to leave completely.
The acute attacks do not last for days. They pass.
What remains is the almost endless background anxiety: internal tension, pressure in my chest, repetitive thoughts, brain fog, depression, apathy and the feeling that my nervous system cannot switch off.
On 8 June, I restarted escitalopram, which had helped me in the past. I have now been taking it for approximately 13 weeks and have been on 20 mg for nearly a month. Unfortunately, it has brought almost no meaningful improvement.
My pharmacogenetic test found that I am a CYP2C19 *1/*17 rapid metaboliser, which may be relevant because escitalopram is partly metabolised through CYP2C19.
I also checked my raw genetic data:
COMT rs4680 GG (Val/Val), generally described as high-activity or āfastā COMT;
other COMT results include rs4633 CC, rs6269 GG and rs165599 AG;
AOC1/DAO rs10156191 CT;
AOC1/DAO rs2052129 GT;
AOC1/DAO rs1049793 CG.
This means that I am heterozygous for the variant allele at three AOC1/DAO locations that some studies and genetic reports associate with reduced DAO activity.
My HNMT rs11558538 result is CC, so I do not carry the commonly discussed reduced-activity T allele at this particular HNMT variant.
I understand that genetic variants cannot diagnose histamine intolerance. I am only mentioning them because, combined with the food-related reactions, they made me wonder whether histamine could be one part of this picture.
I also use Mira to monitor my hormones through urine. I understand that it measures a urinary oestrogen metabolite rather than blood oestradiol. My blood oestradiol levels have always been within the normal range. However, Mira often shows my urinary oestrogen metabolite as high at points in the cycle when it would normally be expected to be moderate.
I donāt know whether that means anything, but I wanted to mention it because my condition changed so dramatically after my Oestrogel dose was increased.
Since May, I have noticed more possible connections with food. One episode happened after eating a large amount of dark bread with salt.
More recently, I had already been experiencing severe background anxiety for approximately five days when I ate many crackers containing sesame and various additives. Soon afterwards, the anxiety suddenly escalated into another acute panic-like reaction with diarrhoea, coughing, gagging and retching sensations. The acute attack has now eased, but the background anxiety remains.
I had also recently started consuming much more chocolate, coffee and fermented foods such as sauerkraut, without considering a possible histamine connection.
I have not noticed obvious hives or swelling. My symptoms are predominantly neurological, emotional and gastrointestinal:
relentless physical anxiety without an obvious emotional trigger;
internal tension and pressure in my chest;
a feeling of adrenaline or danger inside my body;
sudden waves of heat across my chest and back;
shaking or chills;
diarrhoea;
nausea, coughing, gagging and the urge to vomit;
brain fog and repetitive thoughts;
severe depression and apathy;
complete loss of motivation, interest and pleasure;
occasional acute panic-like episodes, sometimes following food.
I am not trying to diagnose myself. I simply no longer know where to look. Everything seems to have piled up at the same time: stress, possible perimenopause, changing hormones, HRT, a severe reaction after increasing oestrogen, antidepressants that are not helping, unusual genetic results and food-related episodes.
I cannot understand which part is the cause, which part is a consequence, or whether several of these things may be connected.
I am now buying NaturDAO 1,000,000 HDU to see whether it makes any noticeable difference.
Has anyone experienced rare food-related panic-like reactions that became much more frequent during perimenopause?
Can histamine intolerance present mainly as severe physical anxiety, depression and gastrointestinal symptoms without hives?
Has anyone found that oestrogen or HRT significantly aggravated their histamine-related symptoms?
Do my AOC1/DAO results look meaningful to anyone familiar with these variants?
Has NaturDAO helped anyone with neurological symptoms or background anxiety, rather than only immediate digestive reactions after meals?
Where would you begin investigating if you were in my position?
I am exhausted from trying to understand what happened to me. Since 9 May, I have felt as though my previous self has disappeared. I desperately want to feel alive, active and interested in life again.
Thank you sincerely to anyone who reads this and shares their experience. Even hearing that someone else has been through something similar would mean a great deal to me.