I have chronic, daily migraines. I have a vp shunt for severe hydro placed 4 years ago and I've had a headache ever since. My headaches are debilitating. They wake me up at night, and I have them off and on all day. I finally got botox for migraines. My headaches got much worse at first (for about 3 weeks) but then I got a little relief, still having headaches everyday. It's time for me to get botox again, but I'm so nervous that my headaches will get worse at first. Has anyone had any experience like this? Please help!

Hi Lizzy! Sorry about your migraines, unfortunately I can relate. I got botox for migraines one time last year. The dr told me that normally there is increased pain before it kicks in. I had an allergic reaction to the first injection I got which really bummed me out because it helped the ice pick type migraines I was having. I still had my daily headaches, but I could deal with that since they are normal for me.

Hope you can get some relief soon!
Nanc

Thanks for your reply! So your headaches also got worse at first? For how long? I don't know whether to get the injections again or not. I do think they helped me at least a little.

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

My dr said the headache would get a lot worse for about a week or so, mine didn't last that long. I would give anything to be able to get them again, but because I broke out in a rash all over a few hours after the injections there was no way I could get them again. If they helped you, then it might be worth getting them again.

Also as Dr Smith asks, have you tried any anti-seizure meds for migraine prevention? I was on Topamax for years and it did wonders for me, cut down the frequency of my migraines big time!! I was on it so long that the effectiveness wore off.

The best migraine meds I ever took was Amerge. But, as always, I developed an allergy to it.

Amerge (naratriptan) and Maxalt (rizatriptan) are meds in a class called triptans, which are used as abortives in treating migraines & cluster headaches. There are more, but the list is finite, with additions unlikely. As with other medication classes, if one med in the group doesn't work, another med in the same group may work, so "If at first you don't succeed...."

....Another case of trial & error -- taking some time -- in the journey.

Doc

Hey Doc, funny thing is that I tried soooo many migraine meds with no relief (Imitrex, Maxalt, Relpax, Zomig, etc...) Amerge worked the best and I took it for several years, then I had and allergic reaction the last two times I took it

Hmmm. No chance it was something coincidentally concomitant?
How bad was the allergic reaction?

I wonder if one of the others might work for you now...

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??

I am on 2 different anti seizure meds. I developed epilepsy after 3 surgeries. The meds I take are keppra and vimpat. They have to be brand only because we had a very hard time controlling seizures with generics and other meds. So .. Really there's not much I can do on that end. My epileptologist gave me many different meds and I had a hard time taking all of them. They put me right to sleep, topamax made me feel like a zombie, she gave me some injectable a etc. and when I have a debilitating headache daily, that's not an option. I have been on so many meds and that's why I finally opted for botox. With botox my headaches worsened (a lot!) for at least 3 weeks.