Chronic Insomnia, Dysautonomia/POTS, and Suspected Histamine Intolerance – Desperate for Sleep Advice (Long Post)
Hi everyone,
I hope you are doing well. I am reaching out because I am very concerned with insomnia, and it’s severely impacting my memory and cognition.
To give you some background, I’ve had issues since childhood, including a suspected delayed sleep phase, mild learning/math difficulties, and a history of Mal de Debarquement Syndrome (feeling like I was stuck on a boat for years after a ferry ride at age 14, though it's now in remission). I also had mild nasal reactions to citrus and certain mushrooms as a kid. However, everything really intensified and broke down for me in mid-2021 when I developed mild orthostatic intolerance/POTS (high heart rate, blood pooling, loss of sweat) shortly after the shots.
Just as my POTS symptoms saw some improvment at the end of 2023, I caught COVID-19 in 2024 and a few months later,in addition to pots symptoms I developed wild blood pressure fluctuations (130/85 with a resting heart rate of 115–120), severe headaches, constipation, and extreme insomnia. Around this time, I was also diagnosed with and treated for H. pylori.
Through online groups, I realized I was also showing symptoms that seemed to line up well with Histamine Intolerance. Foods that never caused me any issues and those that I liked like sourdough, tomato sauce, yogurt, blueberries, nuts, pomegranate, and even leftovers or overcooked chicken—started triggering severe headaches, intense nasal blockages/mucus,headaches blood pressure issues,dizziness, same with Perfumes and scents
My Allergy tests showed elevated IgE and an egg allergy, but any other reactions were unexplained or there is not much they could offer since they reasoned that if I had allergies they would show up and it was only eggs that did.
To cope, I've drastically restricted my diet. At one point, I survived just on bread and honey and bread curry/rice. Today almost 2 years later,most of my meals have still not changed but I do have butter down and an addition of 3 to 5 "safe" meals like green apples,pears,cashews etc. While elimination has helped my headaches (and allowed me to reduce my Nurtec dosage), this further made me think that my issues are histamine related unfortunately my sleep has only gotten worse.
My Current Sleep Crisis:
During the day, I am usually very tired and fatigued, and often feel cold hands and feet. At night, I am completely wide awake, and my core body temperature overheats (sometimes with a hot body but sometimes cold hands and feet other times normal hand and feet but feeling hot). I am aware that the body needs to cool down to initiate sleep, but mine does the opposite.
Since I had no choice regarding insomnia, I used to pull all-nighters (sleep restriction) for a day or two to successfully reset my sleep cycle. However even that is now proving difficult for me, I can even go 48 hours without sleep and if I do get sleep someday it is only like 2-3 hours.
What I’ve Tried (That Has Failed):
- Traditional Sleep Hygiene: Morning sunlight, breathing exercises, binaural beats.
- Supplements: Zinc, Vitamin D, Vitamin K. I tried Magnesium, but Magnesium Glycinate gave me severe headaches so I can't take it. Vit d with K also give me insomnia
- Diet Hacks: Eating carbs before bed(in early stages it worked but then stopped working),I have also tried not eating close to bedtime at all(and sometimes it works most of the time it does not).
- Temperature Hacks: I tried soaking my feet in hot water before bed, but it seems like the heat just triggered systemic wakefulness, which makes me think heat is triggering a histamine release which I later learned
Because my memory and brain fog are getting quite bad from the lack of sleep, fixing it seems like a neccessity. I know histamine intolerance is often secondary to gut issues like SIBO, but after two years, elimination seems to be the only thing keeping my pain away, and I'm terrified to reintroduce more foods. Chances are what I have written is not something very foreign in this community
Aside from standard antihistamines, has anyone with dysautonomia, MCAS, or histamine issues found anything that successfully allows for sleep?