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Old 07-01-2013, 12:03 AM #11
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Quote:
Originally Posted by Lizzyonline View Post
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
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Old 07-01-2013, 12:48 AM #12
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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
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.
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Old 08-08-2013, 02:12 PM #13
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Default Botox helped some

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Originally Posted by Lizzyonline View Post
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!
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!
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Old 08-11-2013, 08:46 PM #14
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Default 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 ~
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Old 09-01-2013, 10:57 PM #15
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Quote:
Originally Posted by Lizzyonline View Post
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!
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
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Old 09-10-2013, 06:06 PM #16
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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.
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Old 09-12-2013, 05:44 PM #17
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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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