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Therapy-resistant migraines

Posted by richardfrancine @richardfrancine, Feb 19 9:49am

Hello everyone
I have been a migraine sufferer since the age of 8. I am now 77 and live with a headache 24/7 (except for the two days a week when my neurologist allows me one narcotic pill). I have tried every therapy in the book (betablockers, triptans, NSAID’s, botox, etc, etc…., including the latest meds out there- cgrp antagonists (aemovig, emgality, ubrelvy, and, so far, 3 infusions of Vyepti). NOTHING WORKS! Have any of you experienced this state of affairs and have you finally solved the problem? I am at my wits’ end. Thank you for any feedback!

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pb50 | @pb50 | Feb 19 3:44pm

How terrible for you. Is your pain on both sides of your head?

REPLY
richardfrancine | @richardfrancine | Feb 19 4:11pm

Actually, it is not what it used to be, with the classical migraine on one side of the head. Now, it feels like my entire head is in a vicegrip - all the time. Thanks for reaching out

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pb50 | @pb50 | Feb 19 5:26pm

For what it’s worth I have a kind of unusual headache called episodic paroxysmal hemicrania. Mine is episodic but I believe there is a continua variant. This is ice pick type pain. One jab after another. Mine lasts 30 seconds and changes to a constant pain for a few mins then turns off for a bit. That all lasts
2 days - 2 weeks. Then it goes away for up to two years. I’ve had it since my first pregnancy but it was another 5-6 years before I was diagnosed.

The weird thing is that It is called an Indocin headache because that is the ONLY drug that hits it. Not narcotics or any of the newer migraine drugs. An old early nsaid - Strong and almost never prescribed now. But it doesn’t just take the edge off. Within minutes it is flat gone. I have four bottles Squirreled Away because I’m Afraid they will Quit Making it.

So if it sounds anything like your headache Ask your Doc about it. Or ask for a script For 5 tablets of Indocin. If that doesn’t stop it, it’s not this headache .

Be SURE to eat if you do take Indocin. Yea it’s just an NSAID But strong and will tear your stomach up

Good luck!

REPLY
1 reply
richardfrancine | @richardfrancine | Feb 19 5:45pm
In reply to @pb50 "For what it’s worth I have a kind of unusual headache called episodic paroxysmal hemicrania. Mine..." + (show)
@pb50

For what it’s worth I have a kind of unusual headache called episodic paroxysmal hemicrania. Mine is episodic but I believe there is a continua variant. This is ice pick type pain. One jab after another. Mine lasts 30 seconds and changes to a constant pain for a few mins then turns off for a bit. That all lasts
2 days - 2 weeks. Then it goes away for up to two years. I’ve had it since my first pregnancy but it was another 5-6 years before I was diagnosed.

The weird thing is that It is called an Indocin headache because that is the ONLY drug that hits it. Not narcotics or any of the newer migraine drugs. An old early nsaid - Strong and almost never prescribed now. But it doesn’t just take the edge off. Within minutes it is flat gone. I have four bottles Squirreled Away because I’m Afraid they will Quit Making it.

So if it sounds anything like your headache Ask your Doc about it. Or ask for a script For 5 tablets of Indocin. If that doesn’t stop it, it’s not this headache .

Be SURE to eat if you do take Indocin. Yea it’s just an NSAID But strong and will tear your stomach up

Good luck!

Jump to this post

Oh my, that sounds diabolically awful! My headaches are definitely not like yours, but I do appreciate your reaching out and will sound my doctor on Indocin. Thank you for the information and all the best to you!
Francine

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pb50 | @pb50 | Feb 19 6:08pm

It was dreadful when it was unrelenting ice picks to the brain for two weeks or more at a time. But I always have Indocin on me and since then it’s really no worse than a garden variety headache.

It’s you that needs all the luck !!

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docb99 | @docb99 | Feb 20 5:22am

There are many of us out here with chronic head pain so you are not alone. I’ve had migraines since I stopped nursing my daughter almost 40 years ago.
For me sumatriptan intervenes and verapamil ER prevents.
I started having intense neck and occipital pain almost two years ago and have now been diagnosed with occipital neuralgia that may be connected to migraines and found others with information and understand ing.
Stay with the forum and you may find someone with useful information.

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1 reply
richardfrancine | @richardfrancine | Feb 20 6:03am

Thank you very much for your feedback. I will look into occipital neuralgia. Yes, I will stay with the forum. God help us all out here!

REPLY
richardfrancine | @richardfrancine | Feb 20 7:19am
In reply to @docb99 "There are many of us out here with chronic head pain so you are not alone...." + (show)
@docb99

There are many of us out here with chronic head pain so you are not alone. I’ve had migraines since I stopped nursing my daughter almost 40 years ago.
For me sumatriptan intervenes and verapamil ER prevents.
I started having intense neck and occipital pain almost two years ago and have now been diagnosed with occipital neuralgia that may be connected to migraines and found others with information and understand ing.
Stay with the forum and you may find someone with useful information.

Jump to this post

Hi again!

I just looked into occipital neuralgia. There is a treatment for it, called spinal cord stimulation, which blocks the pain signals from reaching the brain. Has your doctor ever brought it up? I will bring it up with my neurologist next month, as it seems it could possibly be used for migraines that have resisted every treatment in the book! And my hopes are up again! Maybe, this time. Thank you so much for reaching out and I hope something comes of it for both of us
Francine

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