Author |
Topic: Keppra and my med "cocktail" (Read 1028 times) |
|
Tara Ann
CH.com Alumnus
New Board Hall of Famer
It's always darkest before the dawn.
 
 
Gender: 
Posts: 2459
|
 |
Keppra and my med "cocktail"
« on: Oct 19th, 2007, 12:24am » |
 Quote  Modify
|
Quick reminder I'm Chronic, with a new doc that is a neuro/ha specialist listed with the National Headache Foundation / and Pain management doctor I usually see the Physicians Assistant (We are on a first name basis already it's great) and I see the "big" Doc Z once a month (I can't pronounce his name lol)
They just added keppra to my "cocktail" I've been on topamax for awhile. I couldn't tolerate the side affects above 100mg so I stopped tapering up. Since my CH is completely out of control again I started tapering up again and I'm up to 150mg aday and slowly tapering up (I think we are just trying to get to 200 mg)
The doc tried me on IV Keppra in his office a couple weeks ago (along with some nausea meds) and it brought my pain down and I actually took a nap during the infusion. That was the first time I had gotten a nap in a long time. So now I'm on a taper up of Keppra. Right now I'm on 1500 mg twice a day. It's a crapshoot as to what is going to be my magic dose. Doc said she could go as high as 4000mg.
I'm also on 15-30mg of restoril at bedtime for my sleep/sleep anxiety. That med has a mixed success so far, so it may be coincidental that it even has worked at all.
I have 25 mg phenergan tabs to take as needed. I can take 1-2 every 4-6 hrs.
I just came off 80 mgs of prednisone a day for a couple weeks, then tapered off. Was hoping that would break this cycle but it didn't work. That was the highest (other than IV) steroids I have ever been on!
I also have a pain med that I use that is just to take the edge off. It's a very, very strong pain med that I have to keep to myself, doctors orders. Funny thing though, it doesn't touch the clusters, the doc told me it wouldn't and I knew it wouldn't but it does take the edge of a bit and I need a bit of a break so even a tiny bit of "relief" (that is such a bad choice of wording) is better than nothing.
Ok so that's my med combo in case someone is interested.
Any here on or been on Keppra??? Fill me in please!
I am getting hit so much one after another right now and I am getting a chronic daily ha with it. I am also at the end of my monthly migraine. HAHAHAHA Iam one big friggin headache! Just reading all those meds is going to give someone a headache.
|
|
 IP Logged |
http://www.myspace.com/taraann77
 
|
|
|
MJ
New Board Hall of Famer
Gender: 
Posts: 911
|
|
ra Re: Keppra and my med "cocktail"
« Reply #1 on: Oct 19th, 2007, 1:37am » |
Quote Modify
|
Hi Tara Ann
Wish you were having a better time.
I had never heard of keppra for CH before so I checked it out a little.
Seems to be on the lines of gabapentin, cal channel blocker. Fairly newer drug primary use for epilepsy but also for nuero pain.
An interesting site I found in the process:
http://www.crazymeds.org/KeppraSideEffects.shtml
Quote "Interesting Stuff Your Doctor Probably Won’t Tell You: Keppra doesn’t mess with, like, ANYTHING. In that it has practically no drug-drug interactions, a rare interaction with Tegretol is of most concern to the readers here. That in and of itself is pretty interesting. Girls get more bang for their buck than boys with Keppra. Per the PI sheet women absorb 20% more of Keppra than men do. Keppra is by far the worst tasting pill on the market. Everyone who whines about how bad Lamictal tastes should lick a split Keppra. Then a split Topamax. Topamax's taste warrants a mention in its PI sheet, and Keppra tastes even worse" unquote.
A bunch of links in there if anyones interested.
Regarding your use of prednisone, I have had to go to double your dose 160mg taper in the past to get just a couple day break in a cycle.
Hope you find your relief soon.
PS: I allmost feel quilty posting when I hear about folks like you hurting and I'm feeling ok, But rest assured I have been there and know your pain.
|
|
IP Logged |
MJ
|
|
|
Tara Ann
CH.com Alumnus
New Board Hall of Famer
It's always darkest before the dawn.
Gender:
Posts: 2459
|
|
Re: Keppra and my med "cocktail"
« Reply #2 on: Oct 19th, 2007, 2:34am » |
Quote Modify
|
The doc told me that Keppra is an anti seizure drug.
|
|
IP Logged |
http://www.myspace.com/taraann77
|
|
|
Beastfodder
New Board Old Timer
O2 and clusterbusters - naturally
Gender:
Posts: 294
|
|
Re: Keppra and my med "cocktail"
« Reply #3 on: Oct 20th, 2007, 5:49am » |
Quote Modify
|
I was put on carbazemine after a (mis)diagnosis of Trigeminal neuralgia a while back and noted it has been used for CH too.
Didn't make the slightest difference, unpleasant side effects tho' - low energy levels and generally pissed off, not ideal when in cycle.
Still it was an improvement on 'Sinus' problems that I'd got before then and only reached at after my toys came out the pram when the doctor recommended another sinus operation.
All the best in beating CH
|
|
IP Logged |
O2 and clusterbusters - naturally
|
|
|
phil_h
New Board Old Timer
one day at a time , one headache at a time.....
Gender:
Posts: 447
|
|
Re: Keppra and my med "cocktail"
« Reply #4 on: Oct 20th, 2007, 7:13am » |
Quote Modify
|
I'm going to ask my neuro about keppra. Thanks.......together we fight...... I'm battling with you.... phil h 
|
|
IP Logged |
Angels are among us ........beasts beware !!!!!!
|
|
|
E-Double
CH.com Alumnus
New Board Hall of Famer
Are we ourselves?
Gender:
Posts: 6458
|
|
Re: Keppra and my med "cocktail"
« Reply #5 on: Oct 20th, 2007, 7:25am » |
Quote Modify
|
never did but know that rori and mike had horrible side effects with regards to night terrors,
hope it helps and that you dont have such a rough time
|
|
IP Logged |
I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
|
|
|
Tara Ann
CH.com Alumnus
New Board Hall of Famer
It's always darkest before the dawn.
Gender:
Posts: 2459
|
|
Re: Keppra and my med "cocktail"
« Reply #6 on: Oct 20th, 2007, 12:43pm » |
Quote Modify
|
on Oct 20th, 2007, 7:25am, E-Double wrote:never did but know that rori and mike had horrible side effects with regards to night terrors,
hope it helps and that you dont have such a rough time |
|
No worries about night terrors when all I do is power snooze
 or sleep walk (or find myself sleeping in the sink lol)
|
|
IP Logged |
http://www.myspace.com/taraann77
|
|
|
thebbz
CH.com Alumnus
New Board Hall of Famer
Ow,Ow,Ow
Gender:
Posts: 2181
|
|
Re: Keppra and my med "cocktail"
« Reply #7 on: Oct 20th, 2007, 7:24pm » |
Quote Modify
|
Good luck with that TA. The neuro tried that several episodes ago and I had a terrible time with it. Seemed to make the demon kick into overtime. Interesting to note that this was served after 2 pred tapers and with 620 a day of topomax.
I hope it works better for you.
thebb
|
|
IP Logged |
It wasn't me I didn't do it
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss