Hi Lizzy,

I've seen you other posts & PM. It's a journey/ordeal for all of us with hard to diagnose/treat chronic migraines. What works for me has taken years to accumulate, and while things are much better than they once were, I'm not migraine free. I had one last week that, if my DW had been home with the car, would have sent me to the ER. But this isn't about me right now...

As I recently posted in another forum:
Are you keeping a headache/pain/migraine diary/journal/log?

migraine journal

If not, you can read up on them starting with the above link, and then continue with some of the suggested related searches at the bottom of the first page of links. This is one of the best tools to help your doctor help you, which is, IMO, the key.

Botox was suggested to me at one point (before our insurance would cover it), but after researching it, I opted out even if it were covered. Between the side effects (some of which you've experienced) that may not go away for weeks or months (some for the duration of the injections) and the limited lifespan of a few cycles (the body builds up a tolerance to the botox) it just didn't seem worth it to me for a "band-aid fix". (YMMV)

I tried several prophylactics and abortives. None of the prophylactic meds worked (though our ins. co. played doctor/God and mandated one or they wouldn't cover the abortive. That prophylactic may have caused/contributed to my peripheral neuropathy), but after trying several abortives, Maxalt/rizatriptan works the best for me (again, YMMV). There are natural/herbal remedies that work for some. They did not for me, but IMO they are worth trying (but check for medication interactions beforehand).

Some anti-seizure meds (e.g. topamirate) are being used off-label for migraine prophylaxis. If you haven't been down that road, it might be worth investigating and discussing with your doctor (killing 2 birds...?)

One of my stress-related factors involves certain muscles & nerves at the base of the skull as per this diagram:

I use (with the help of my DW, who actually does the massage/therapy) myofascial triggerpoint therapy on this point as/before the migraine comes on. I have another region along my front hairline that helps to massage once the migraine manifests. You may have similar or different trigger points, acupressure points, etc.

acupressure for migraine

Sometimes, there are groups/systems of these points, which must be treated (attacked) in sequence and in the right order, or the headache can not be averted/relieved. Again, a journey/learning process to find your points and how to treat them. A certified myofascial trigger point therapist helped me, and taught us how to do it and more on our own.

The rest has been finding/figuring out my other triggers -- foods, smells, allergies, computer migraine headaches and other triggers.

That's about all I've got for now. It's late, and past my pumpkin hour...

Doc

Thanks Doc! I have an appt Weds. And I think I'm gonna cancel. I have to travel alone with my kids in 2 weeks and the headache worsening doesn't seem like a good thing obviously. Also, I've read other side effects that just don't seem worth it. Yes, I do journal. I keep a pretty strict diet (now) as far as triggers etc. it seems almost pointless to journal because I have a headache off and on all the time. I've often thought of acupuncture and I need to go to my chiropractor again. That seems to help me. Since I know the cause of my headaches (vp shunt related) it makes it easier and harder at the same time if that makes any sense! Easier because I know the cause.. Harder because I can't fix it! Know what I mean??

Actually, I do. One cause of mine was determined to be reactivation of the Epstein-Barr virus from having mono as a teen. It took a migraine specialist (as mentioned above) to figure that out, and he was better/more experienced with treatment options than regular neuros.

From others' experiences here, acupuncture may work, but generally only while it's being done and perhaps a short time afterward. That a chiropractor seems to help suggests to me that there is a musculoskeletal component; this is where acupressure and/or myofascial triggerpoint therapy may help.

Did you have the constant headaches before being on Keppra? Headaches and pain are known side effects. I also noticed in a post in the Hydrocephalus group that, "headaches have gotten better since they took him off Keppra and put him on Lamictal."

I see you've been bounced around by doctors doing the "I dunno two-step"; what do they have to say about all this (the headaches and treating them) if anything?

Doc