My POIS = Gluten Intolerance -> Iron Deficiency -> Migraine

[BuckarooBanzai88]

tl;dr
I have serious gluten intolerance. It 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.


Longer Version
My 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.

[demografx]

BuckarooBanzai88, congratulation on your early success!

[Muon]

Heather1111:

"So are there any other women in here? I see this is mostly a man issue. I just came across this whole pois term for the very first time and it is completely me. I've been suffering with what I have been calling sex migraines for almost 5 years now."

[BuckarooBanzai88]

Thanks Demo!

@Muon, I let Heather know about Nurtec.  Thanks for pointing that out!

[Muon]

@Muon, I let Heather know about Nurtec.  Thanks for pointing that out!

Yes, good idea.

[POISed2cure]

Amazing!!! Keep us posted. I feel a headache coming on immediately after orgasm, but have learned over time to prevent it from becoming a total migraine. Whatever is causing that migraine would be the same mechanism that causes other symtoms which also appear immediately after more or less.
May give Nurtec a try too if I can find it here!

[POISed2cure]

Buckeroo, did you take Nurtec before or after O?

[BuckarooBanzai88]

I'm so sorry I didn't see this!

My symptoms come on an hour or more after orgasm so it doesn't matter if I take the Nurtec before or after orgasm.  It seems to still be working better than anything else I've tried. 

I hope you're able to try it, that it's helpful, and then that you can get insurance to pay.  I'm still doing battle with my insurance company.

[Muon]

https://twitter.com/migraiNO/status/1618036598872080384

Quote:
@Orgasmicillness since using #Emgality not only #Migraine stopped but also #pois like symptoms seem to be much less (if at all) Has this been researched already?

https://en.wikipedia.org/wiki/Galcanezumab

[Hopeoneday]

Then, pub med says: what triggers the release cgrp?

Activation of trigeminal nerves causes initial release of CGRP and other neuropeptides that promote release of inflammatory mediators. The inflammatory mediators, including TNF-?, further increase CGRP synthesis and release via MAPKs.
Neurological inflamatory part of pois?

[Enix]

Hello 

Available in France ?

Thank you

[demografx]

…At this point, I take ~8000 IU of vitamin D a day (+ supporting supplements like magnesium, K2, and B5). Nurtec, Prednisone, and Sumatriptan whenever I have an orgasm. That seems to keep symptoms mild and mostly limited to a single day.

BB88, many thanks for sharing with us your successful protocol.

Mild/one-day symptoms took me and  many others years  to achieve!

[Quantum]

HI BB88,

Are you still on your AIP diet, or just using your supplements and medication, now ?

[BuckarooBanzai88]

Hey Quantum,

I’m so sorry I missed this!

I’m slowly weening myself off the AIP diet. At this point I still don’t eat nightshade or gluten/grains (except rice).

I’m still finding migraine medication to work better than most things so long as I keep my vitamin D levels up.

I don’t know if I mentioned this, but I took a Spectracell micronutrient test and trying to address some of my nutritional deficiencies has also helped a lot with my baseline energy levels.

Specifically vitamin d, b5, and most recently alpha lipoic acid. All of which I was deficient in. I think ive got some weird metabolic stuff going on because I’ve proven to be very sensitive to all of those supplements.

Anyway, that’s way more than you asked, but I figured I’d share other things that've been helpful.

[BuckarooBanzai88]

I've updated my initial post to reflect my new findings. My ferritin had been 17 ng/ml. My symptoms resolved after of 900mg of iron sucrose infused over 5 different sessions (200, 200, 200, 100, 200).

[demografx]

I've updated my initial post to reflect my new findings. My ferritin had been 17 ng/ml. My symptoms resolved after of 900mg of iron sucrose infused over 5 different sessions (200, 200, 200, 100, 200).

Congratulations!

[BuckarooBanzai88]

Thank you very much!

[Enix]

I've updated my initial post to reflect my new findings. My ferritin had been 17 ng/ml. My symptoms resolved after of 900mg of iron sucrose infused over 5 different sessions (200, 200, 200, 100, 200).

Congratulations 

[BuckarooBanzai88]

Thank you very much! Never thought I'd see the day to be honest.

[Enix]

your blood test shows gluten intolerance ?