tl;dr
I have serious gluten intolerance. I caused a serious iron deficiency (without anemia) which in turn caused me to have migraines every time I had an orgasm. After removing all gluten from my diet and receiving several iron infusions, my POIS symptoms are 100% gone without any drugs. Apparently, I also had low vitamin b3/niacin so I supplement with niacinamide which seemed to help some with symptoms as well. Finally, I noticed that caffeine makes my migraines much worse. So I've removed that from my diet.
Perhaps unrelated to POIS, I also have trouble processing vitamin B5. I take pantothenic acid and pantetheine at the same time to compensate. But I can't take too much or they cause anxiety/sleep problems.
Treatments:
- Gluten Free Diet
- Caffeine Free Diet
- Iron Infusions / Supplements
- Niacinamide Supplement
- Pantetheine Supplement
- Pantothenic Acid Supplement
Longer VersionMy symptoms are all part of Cluster 1 and for them, I've taken prednisone and other steroids to cope. I've done this for years now.
I've seen MANY different types of doctors, but I recently visited a neurologist for the first time. He suggested my symptoms are very similar to migraine symptoms. I had no idea migraines could cause depression, difficulty finding words, brain fog, clumsiness, anxiety, fatigue, irritability, sensitivity to noise, and memory problems.
But evidently, they can. So he suggested I try a new migraine medication. I had the option of trying one of the injectables or an oral, short lasting formulation. I chose to take Nurtec ODT. It's an orally dissolving tablet with an 11 hour half life.
There also exist injectables that stay in your system longer than a month. I didn't want to risk having a bad reaction and being unable to recover for more than a month.
But Nurtec seems to be working for me. The first time I took it, I took it WITH prednisone and had no symptoms for the first time (I should add that 60mg of prednisone also removes all symptoms, but you can't take that much all the time).
The second time I took it WITHOUT prednisone and had no symptoms. It's only been two times, but I wanted to share the news early in case it helps someone else. I'll certainly report back if it stops working.
But these are very expensive medications. It's going to be difficult for me to get insurance to cover the costs, but I think there's a path forward there by trying a number of other migraine medications.
I should also add that I'm still on the AIP diet which has always helped tremendously. I'll try reintroducing foods and let you know if that causes Nurtec to work less effectively.
EDIT:
Sumatriptan also seems to help
EDIT:
After iron infusions, I don't have POIS symptoms anymore. No more drugs.
