Intractable patients who finally found relief: what worked for you?

I have migraine without aura with daily persistent pain, headaches starting at age 6 (30F). After essentially wasting my 20s away during the height of my condition, I’ve become very aggressive in examining my care further from revisiting diagnostically to treatment.

I’ve gone through the ‘classic’ preventatives like Topiramate, etc. I’ve covered my bases with CGRPs. Same to be said for rescue meds such as Sumatriptan or Ubrelvy and such respectively. The drugs that give me the most relief are Qulipta and Trudhesa for daily/rescue preventatively and they just barely make any kind of difference.

All of my imaging is updated and clear. I had a spinal tap this past fall that showed slightly elevated pressure, so I’ve started Diamox to attempt to relieve this. It’s been about four weeks and I see no change. I was hopeful about this one and have absolutely zero result one way or another which is basically why I’m turning to the sub in desperation for ideas.

Has anyone out there with intractable (or close to it) migraine found some sort of personal solution for managing your pain? Did you have something that was like an ah-ha moment for your brain?

I’m not looking for diagnoses or treatment plan recommendations, just looking to learn what others may have benefited from to jog my brain about things I can look into on my own.

Things I forgot to add:

  • I do have a diagnosis of occipital neuralgia. However, my neurologist recently decided to discontinue nerve blocks as “it didn’t seem like they were helping”. I don’t think he was factoring in we were only using lidocaine though- of course it only lasts a few days.

  • I did months of dedicated physical therapy last year under my neuro’s recommendation, which helped a very minimal degree for neck pain and mobility. I “graduated” from needing to attend appointments; it is really hard to keep up with it having a migraine every day so this is something that has the potential to aid some symptoms but by no means helpful to the overall issue.

  • I receive Botox every 11 weeks.