Author Topic: Cluster 1 - Migraine - CGRP Inhibitors (Success)  (Read 444 times)

BuckarooBanzai88

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Cluster 1 - Migraine - CGRP Inhibitors (Success)
« on: April 23, 2022, 12:12:39 PM »
tl;dr
I've found that CGRP Inhibitors wipe away all (maybe 95%, not enough data points yet) of my symptoms with no side effects.  They are a very expensive, new class of drug used for migraines.

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

« Last Edit: November 12, 2022, 01:23:27 PM by BuckarooBanzai88 »

demografx

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Re: Cluster 1 - Migraine - CGRP Inhibitors (Success)
« Reply #1 on: April 23, 2022, 05:31:32 PM »
BuckarooBanzai88, congratulation on your early success!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Muon

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Re: Cluster 1 - Migraine - CGRP Inhibitors (Success)
« Reply #2 on: April 26, 2022, 01:42:00 PM »
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

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Re: Cluster 1 - Migraine - CGRP Inhibitors (Success)
« Reply #3 on: April 26, 2022, 02:19:34 PM »
Thanks Demo!

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

Muon

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Re: Cluster 1 - Migraine - CGRP Inhibitors (Success)
« Reply #4 on: April 26, 2022, 02:24:39 PM »
@Muon, I let Heather know about Nurtec.  Thanks for pointing that out!
Yes, good idea.

POISed2cure

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Re: Cluster 1 - Migraine - CGRP Inhibitors (Success)
« Reply #5 on: May 19, 2022, 03:36:33 AM »
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!
« Last Edit: May 19, 2022, 04:14:28 AM by POISed2cure »

POISed2cure

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Re: Cluster 1 - Migraine - CGRP Inhibitors (Success)
« Reply #6 on: May 23, 2022, 01:07:35 AM »
Buckeroo, did you take Nurtec before or after O?

BuckarooBanzai88

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Re: Cluster 1 - Migraine - CGRP Inhibitors (Success)
« Reply #7 on: June 20, 2022, 08:55:43 PM »
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.