Therapy-resistant migraines

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

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.

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.

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.

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.

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?

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.

There is an organization, Migraine World Summit, (you can on online to find them). They have an event every year that lasts about 5 days and has speakers from all over the world. Most are famous migraine specialists. I learn a lot that my doctors never told me. But maybe most importantly, if you join, it only costs about $120, and you get access to their treatments. They have about 200 different medications, tips on holistic cures, etc. My thought for myself is there is something out there that I'm missing. So, I'm taking the list to my doctor and we're going to go through it and see if we can find something that works. May take a while, but obviously worth it. They also have a chat line that you can actually talk to them. I haven't done it yet, but I'm going to. Good luck. Jim

The Migraine world Summit is the real thing! I have listened to most of the interviews for the last three or four years and highly recommend it for anyone dealing with chronic migraine. They work hard hard to be unbiased and evidence based. Many of the people involved, are volunteers and many or even most of them deal with chronic headaches themselves. if you haven’t participated before it is well worth it!!
Probably most people find new ideas of treatments as well as things they can do on their own to help, which gives you a better sense of control. The other thing that it gives you is community, helps with hope and a feeling that you’re not the only one dealing with this.

Thank you I did monitor some of the summit lectures this year. However I’m sorry to say the membership is not in our budget. I did get some helpful information though.