Author Topic: Who takes Neurontin (gabapentin) for headaches?  (Read 6982 times)

Captain Deb

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Who takes Neurontin (gabapentin) for headaches?
« on: June 01, 2007, 12:47:33 pm »
Just want to know who else is taking Neurontin (gabapentin) for post-op or post-radiation headaches?  It took my neurologist 3 years to get me on it and it's been a lifesaver.  He titrated me up to 2700 mg a day, which sure fixed the headaches for a while, but left me with a lot of fatigue--so much so, that I could hardly function.  I've been gradually weaning myself down to a dose that allows me to function yet keeps the headache somewhat down to a bearable level--1200-1800 a day.

Bre well,

Capt Deb 8)
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
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dally1932

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Re: Who takes Neurontin (gabapentin) for headaches?
« Reply #1 on: June 01, 2007, 02:48:23 pm »
Hi Deb, I was taking 4000mg per day for several months, but felt it had lost its edge on helping my pain. My pain never went away during the time I was on it, only seemed to lessen it at times, but nothing I could count on for any constant pain reliever. I explained to my pain mamangement doctor that I felt it wasn't working and he backed me off it over several weeks and I never noticed increase pain in doing so. This could vary by individual and work well for some like most topics on this site.

Thanks!
Chuck Dally
Left AN Tumor 6/02/02 1.4 X 1.8

Janet

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Re: Who takes Neurontin (gabapentin) for headaches?
« Reply #2 on: June 01, 2007, 11:09:23 pm »
I took Neurontin for a while but I never really got to a theraputic dose to decrease my headaches. I couldn't sleep and was restless at night.  I felt like my brain wasn't operating on all cylinders. I switched to Trileptol and I didn't have any problems sleeping but I still felt a little mind numb. The highest does was only 300mg/day. I was taking Indomethacin too. When I went on the Botox study, I gradually stopped the Trileptol because it didn't seem to be doing any good. The vague feeling went away.
Janet
Surgical removal of 1 cm x .8 cm x .6 AN on 4/2004.

ppearl214

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Re: Who takes Neurontin (gabapentin) for headaches?
« Reply #3 on: June 02, 2007, 06:30:06 am »
I've been on Neurontin for just over a year now.  Went as high as 600 mg (told dr I refused to go beyond that dose) and now down to 500 mg/daily (200mg in am, 300 mg at night as it does make me drowsy).  I've also gained weight from the dang stuff!  My dr's prescribed it to me for neuropath pain unrelated to the AN.  For headaches, I'm on Imitrex as needed.....

Phyl
1cm x 7mm x 4mm, left IAC AN, w/Chiari I Malform., Cyberknife - Beth Israel/Boston, April, 2006
May 10: Per Dr's, "it's a "Done Deal", Hearing same as pre-treatment

"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Mari

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Re: Who takes Neurontin (gabapentin) for headaches?
« Reply #4 on: July 13, 2007, 10:06:59 pm »
I took neurontin for several years. my doc has now changed me to lyrica and I am seeing better results.  I have been having seizures 7years post op so the lyrica controls them too.
Mari

lifeisgood

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Re: Who takes Neurontin (gabapentin) for headaches?
« Reply #5 on: July 22, 2007, 09:06:16 pm »
I was on 600mg for about 5 months then went off it.
It didn't help me with Headaches.
The lifesaver for me has been imitrex.
I just visited the Diamond Headache clinic in Chicago because I was tired of not being given answer to my headaches.  I was FINALLY diagnosed with migraines without aura.  They're atypical because mine reside in my face along the trigeminal nerve on the affected and unaffected surgery side.  This makes sense to me since my tumor superiorly elevated the trigeminal nerve and it was involved with the tumor.  I don't know if Doctors would support my theory but it makes sense to me.
I also read that with migraines, the pain signals travel along the trigeminal nerve to the brain.  If my trigeminal nerve path is "miswired" or faulty, I think the pain is getting stuck there.  Again, I'm not a doctor but it makes sense to me. 
I was given topomax (25mg for 1 week followed by 50mg daily)  as a preventative.  I was also prescribed an over the counter herbal remedy called Migrainerelief.  It has fever few, riboflavin and magnesium in it.
I am really happy that I explored the headaches with a specialist. I didn't feel supported by my neurologist post surgery.  As happy as I was with his work I didn't feel that I was given the support or direction on handling the headaches or the cause of them.

If you are interested in more tips for keeping migraines at bay, please email me.
Marylimanowski@wowway.com
3.4cm AN surgically removed 3/04
by Dr. Wiet and Kazan at Hinsdale Hospital in Illinois.
Translab approach

Mari

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Re: Who takes Neurontin (gabapentin) for headaches?
« Reply #6 on: August 11, 2007, 12:24:09 pm »
Just want to know who else is taking Neurontin (gabapentin) for post-op or post-radiation headaches?  It took my neurologist 3 years to get me on it and it's been a lifesaver.  He titrated me up to 2700 mg a day, which sure fixed the headaches for a while, but left me with a lot of fatigue--so much so, that I could hardly function.  I've been gradually weaning myself down to a dose that allows me to function yet keeps the headache somewhat down to a bearable level--1200-1800 a day.

Bre well,

Capt Deb 8)
   
I took nuerontin for years and have now been changed to lyrica, I'm 7years out and decided to not only have debiltating headaches,balance problems eye trouble, facial pain etc but now i'm havivng seizures. this is my first day on here so I don't know what the hell I am doing. when i try to reply my posting disapears then shows up some where else. Sorry about that I HAD TRANSLAB,  But hello Deb nice to meet you
Mari

Captain Deb

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Re: Who takes Neurontin (gabapentin) for headaches?
« Reply #7 on: August 11, 2007, 02:13:09 pm »
Nice to meet you, too, Mari!
A helpful hint about your postings--click on the "profile" button under the search bar on the top of the page.  Go to "Look and layour preferences "along the left column and click it. Check the box that says "return to topics after posting by de4fault" and voila, your posts will appear right after you post them.  You can also go to the Forum profile Information" section and put in a "signature"--the small type that gives your particulars after each post.  Be sure to click the Change button at the bottom of the page. Welcome to the Forum!

Capt Deb 8)
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Larry

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Re: Who takes Neurontin (gabapentin) for headaches?
« Reply #8 on: August 20, 2007, 04:43:07 pm »
Just found this one - I'm on neurontin as well. I'm taking 1200mg a day and find that it helps a bit but nothing else did.


Laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Was in watch and wait mode until Dec 2008 now must do something.
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http://www.frappr.com/laz