NeuroTalk Support Groups - Botox for chronic daily migraines

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Lizzyonline

06-29-2013 09:53 PM

Botox for chronic daily migraines

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!

Nanc	06-29-2013 11:27 PM

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
:hug:

Lizzyonline

06-29-2013 11:39 PM

Quote:

Originally Posted by Nanc (Post 996146)

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.

Dr. Smith

06-30-2013 12:11 AM

Quote:

Have you been to a headache specialist? Not a neurologist who treats headaches -- most claim to do that. I mean a doctor (may or may not be a neuro) whose practice is limited solely to headaches/migraines. That's what it took for me; after years of being bounced from neuro to neuro, I found a migraine specialist who was able to dx me the first visit with 3 questions. Treatment took a bit longer, but he was eventually able to reduce my headaches in frequency (>15/month to <10/month) and intensity.

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:
http://chuntianacademy.com/upfiles/i...ist_custom.jpg
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... :D

Doc

Nanc	06-30-2013 01:07 AM

Quote:

Originally Posted by Lizzyonline (Post 996148)

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.

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.

Dr. Smith

06-30-2013 08:56 AM

Quote:

Originally Posted by Nanc (Post 996167)

The best migraine meds I ever took was Amerge.

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...." :rolleyes:

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

Doc

Nanc	06-30-2013 10:37 AM

Quote:

Originally Posted by Dr. Smith (Post 996220)

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 :(

Dr. Smith

06-30-2013 03:48 PM

Quote:

Originally Posted by Nanc (Post 996235)

Hmmm. :Hum: 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... :Ponder:

Doc

Lizzyonline

06-30-2013 07:51 PM

Quote:

Originally Posted by Dr. Smith (Post 996158)

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:
http://chuntianacademy.com/upfiles/i...ist_custom.jpg
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... :D

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??

Lizzyonline

06-30-2013 07:59 PM

Quote:

Originally Posted by Nanc (Post 996167)

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.

Dr. Smith

07-01-2013 12:03 AM

Quote:

Originally Posted by Lizzyonline (Post 996365)

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

Nanc	07-01-2013 12:48 AM

Quote:

Originally Posted by Dr. Smith (Post 996317)

Hmmm. :Hum: 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... :Ponder:

Doc

Well, my chest got real tight, shortness of breath, a rash, nausea...pretty bad allergic reaction I'd say!

I thought the first reaction might have been a coincidence since I had been taking it so long without issue, but the second time it happened confirmed that it was the Amerge :(

I have also wondered if the some of the others would help now too...will not try Imitrex again though. The pills and nasal spray did nothing for me and I had a bad reaction to the shots.

Liora

08-08-2013 02:12 PM

Botox helped some

Quote:

Originally Posted by Lizzyonline (Post 996133)

My husband suffers with chronic daily migraines and cluster headaches, ice pick headaches and now some burning and itching feelings he calls the 'heebeejeebees', causing him to itch until his skin is raw, yet there no rash.

He's been taking Botox treatments every 90 days for over a year. They do help and the first time it didn't seem like it did much, over time his pain lessened quite a bit and once, when we missed his appointment by 14 days, the pain came back with a vengeance. We don't miss appointments now, lol.

Botox was really scary in the beginning, especially after an experience at one of the headache clinics which shall remain unnamed that did a nerve injection that set off the worst cluster on the opposite side of his head ever and all they did was say 'hmm'.

We've had relatively good luck with it, our neurologist is always up on the latest developments with it and insertion points have changed since it was first introduced. It took a couple treatments to start seeing the results.

I hope you feel better soon, having daily migraines isn't for sissies and you are to be commended on your strength and endurance!

cindy4hope

08-11-2013 08:46 PM

Migraines/botox

Hello everyone. it's been a very long time since I have been on this forum. I have chronic migraines and have tried just about everything with no success. My neurologist wants me to try botox again...I tried botox several years ago, but only went through one treatment. the neurologist suggest trying it a couple of times before stopping the injections. Have any of you had success with botox? I have also had epilepsy brain surgery, and sometimes I wonder if these terrible migraines are not a result of the brain surgery. :(

Cindy ~

Lovelife32

09-01-2013 10:57 PM

Re: botox for migraines

Quote:

Originally Posted by Lizzyonline (Post 996133)

Im so sorry to here that lizzy but happy im not the only one going through this to I also have a v.p shunt and a l.p shunt but mine is for pseudotumor cerebri its kind of like hydro but I deal with real bad headaches ive done the botox it helped for a bit but then the headache came back worse I never seem to quite make it till the next time and then my neurologist wanted to try it again so we did the pain was horrible my whole side of my face Street and my headache never went away he then wanted to try trigger point injections at this point I was willing to try anything I've been paying for so long so can I said okay and again nothing still to this day has happened I take strong medications for the pain I throw up several times during the day because of the pain I've gone through 6 in a religious because they've given up on me because my case is too complicated and I am still left with no answers so Lizzie I wish you the best of luck stay strong keep your head up don't give up and don't let those doctors give up on you

hgoldson

09-10-2013 06:06 PM

I have had the same good experience with Amerge -- every other triptan I have tried makes me feel depressed and only somewhat relieves symptoms, but Amerge (naratriptan) kicks the migraine and makes me feel completely normal. Unfortunately after about 20 years using it, it's not quite as effective as before, but still works in most cases.

Botox was AWFUL -- my head felt bruised for three months and I had a low-level headache all that time as well. The only relief I got was with prednisone. I couldn't wait for it to wear off. And, the doc didn't inject any just above the outside ends of my eyebrows, so when I tried to raise my brows I looked like Jack Nicholson. :)

And Topamax... blech. Felt awful and didn't help.

Vowel Lady

09-12-2013 05:44 PM

Last time I checked (a few years ago) Topiramate was FDA approved for tx of migraines. I can't stand the med as it causes big time memory issues for me, BUT no doubt it has helped with the frequency of my migraines. It is also now very very rare for me to need the Imitrx shot, which I had to take previously rather often. Now, I take Treximet as an abortive, which has the same ingredient as Imitrex (moderate dosage) and an analgesic. Anyway, Topamax might be something to discuss with your doctor.

I know some people have had some good luck with Botox. Even the ones I know who have gotten some relief, it's been somewhat confusing. I hope your second round of injections works better for you.

I have found keeping my Topamax dosage low, a relatively happy compromise.
I also more and more watch my food intake and have learned better and better ways to manage my stress.

Wishing you well...migraines are a special kind of heartache...but perhaps a special kind of lesson. After almost two decades of this...I'm trying to look at it this way,...not easy.

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