1. < Headache & Migraine

Therapy-resistant migraines

Posted by richardfrancine @richardfrancine, Feb 19, 2024

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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sanderson23 | @sanderson23 | 4 days ago
In reply to @crewsr "I spent about 45 years with migraines (no auras) on the left side of my head...." + (show)
@crewsr

I spent about 45 years with migraines (no auras) on the left side of my head. Probably from a injury from horse riding accident at age 11. All I had for many years was aspirin until Acetaminophen and Ibuprofen were invented (yes, I'm that old.). Those OTC meds were not at all successful at getting rid of migraines. The best Rx drug I ever used for migraines was Caffergot (ergotamine with caffeine) but for some odd reason it was taken off the market about 10 or 15 years ago. It had worked like magic for me. Finally my doctor sent me to a pain specialist that specialized in a procedure to deaden the nerves in my neck. That Radiofrequency Nerve Ablation procedure was a true miracle! I've never had another migraine since and any headaches I do get are minor and go away on their own. A friend of mine with the same migraine problem had it performed by a different doctor with a poor outcome. Her headaches got worse. Just good luck for me or what? It took several visits to qualify for the procedure but was well worth the time and effort.

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So glad you are doing better--what level did you have the RFA at?

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sanderson23 | @sanderson23 | 4 days ago

That is horrible. My headaches are very bad, but yours sound worse. I am truly sorry. Have you been able to see a headache specialist? You certainly qualify as someone who should consider it. I find that the times that I have had control, it is often a combo of things that help, not just one. But it changes over time as things stop working eventually......
One thing that I find in general, is that I have to be on top of my lifestyle management. Regular exercise, diet (low sugar, low processed foods, organic, no artificial additives, lots of fruits/veggies), stress management (meditation is what I usually do), hydration. If I get off track with those, maybe even because I am feeling better and think I can get away with it, bad things happen. So, maybe you are already doing those things, but something to keep in mind for the others reading this too.
I hope you find more relief.

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sanderson23 | @sanderson23 | 4 days ago
In reply to @roseann4z "I have recently started Qulipta & I think I am worse. Pain every day. I am..." + (show)
@roseann4z

I have recently started Qulipta & I think I am worse. Pain every day. I am 71 and want peace. Have an rx for medical marijuana but have been afraid to try it. Thought it wou give me more headaches. Maybe I should. The THC is what stops pain? Is that correct? I’ve been told by one neurologist that I am too old for migraines. I switched to a headache specialist but so far she gives me pills that don’t help. I am so discouraged. Thanks for your answers & support. Keep us posted on progress.

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I am 61 and thought the migraine would get better after menopause, but that is when it got worse! I never used marijuana recreationally, but did try it several months ago for migraine. It did help--I think it helped some of my neck/nerve pain that was fueling the migraine. Anyway, I experimented with different combos and for me it was the THC that helped, and studies I have read seem to agree.

I did gummies as I had no interest in smoking it. ANd I wanted to use it for prevention, not treatment. So, I take it every night before I go to bed, I don't take it when I get a headache. My neurologist said you are more likely to get Medication Overuse Headache (which can give you more headaches) if you smoke it and use it just when you get a headahce, than if you use it preventatively with an edible. I don't know if that has been clearly established with scientific studies or not.

Anyway, if you decide to try it, just start really really low. The dose I started on was so low I didn't feel anything at all! Then I crept up every few days until I found it helping. For some reason I don't really get high from it, just a little drowsy but not too bad since I take it at night anyway.

Of note, I live in a state where cannabis is legal for anyone.

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mikaylar | @mikaylar | 3 days ago
In reply to @roseann4z "I have recently started Qulipta & I think I am worse. Pain every day. I am..." + (show)
@roseann4z

I have recently started Qulipta & I think I am worse. Pain every day. I am 71 and want peace. Have an rx for medical marijuana but have been afraid to try it. Thought it wou give me more headaches. Maybe I should. The THC is what stops pain? Is that correct? I’ve been told by one neurologist that I am too old for migraines. I switched to a headache specialist but so far she gives me pills that don’t help. I am so discouraged. Thanks for your answers & support. Keep us posted on progress.

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Well I am 78 and my neurologist(s) never said I was too old for migraines. That is ridiculous. Qulipta and all the others did not work for me. I had this headache for almost 6 years every day/all day which includes worsening dizziness.

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roseann4z | @roseann4z | 3 days ago

So sorry. I am trying each new recommendation but it is so disheartening. My current neurologist is a headache specialist & has never said I am old, but she is about 30 so life experiences are not there.

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1 reply
Moderator
Lisa Lucier, Moderator | @lisalucier | 10 hours ago
In reply to @roseann4z "So sorry. I am trying each new recommendation but it is so disheartening. My current neurologist..." + (show)
@roseann4z

So sorry. I am trying each new recommendation but it is so disheartening. My current neurologist is a headache specialist & has never said I am old, but she is about 30 so life experiences are not there.

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Hi, @roseann4z. That does sound disheartening to try multiple recommendations with no results.

Has any treatment had an effect with your headaches? Are you planning to stay with your headache specialist?

@richardfrancine - how are things going with your migraines?

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1 reply
roseann4z | @roseann4z | 6 hours ago
In reply to @lisalucier "Hi, @roseann4z. That does sound disheartening to try multiple recommendations with no results. Has any treatment..." + (show)
@lisalucier

Hi, @roseann4z. That does sound disheartening to try multiple recommendations with no results.

Has any treatment had an effect with your headaches? Are you planning to stay with your headache specialist?

@richardfrancine - how are things going with your migraines?

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I am going to stay with her for now, hard to find another headache specialist and she gets very good reviews, just hard to see her. I have an appt in June with her PA & am on the cancellation list ( can’t see her until 10/1!) they are willing to discuss other options i.e. nerve blocks at my next appointment since so far Qulipta, Nurtec & Ubrelvy have not really made a difference (ditto PT ) I’m open to most ideas.

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