Hey everyone.  I recently got of Topamax (which was working, but had some side effects I couldn't deal with, namely shortness of breath) - and am now ramping up on Neruontin.  I am on a relatively low dose compared to what I've seen others say they were on (900mg) and I feel totally woozy, like, just heavy and removed by one layer from the world. 

Has anyone here had that feeling/experience and stayed on it long enough to tell me if it goes away, and the body adjusts?

Thanks,
Joshua

I was on it for almost 6 months and all it did was make me stupid. Didn't do a thing for the headaches.

Thanks for that.  I am getting hit less since starting the 900 (up from 600) but the affects are also worse.  I read that the body can/does adjust, but I wonder if that means I learn to deal with this state of affairs or if I get my energy back after a few weeks.

I don't know. It was a long time ago, and I truly believe the mind shuts out bad experiences for a reason.

All I remember is feeling stupid and tired. Enough to know that I won't try it again.

I was looking through my notes recently and I see where I noted that Neurontin worked well for me for preventing attacks (during my last  episode 7+ years ago), but it took 2 weeks to fully kick in.

Nutty thing is that I wouldn't even have remembered that if I hadn't documented it.  :-/

I don't believe I experienced noticeable side effects with it - definitely not wooziness - I would've remembered that.

bejeeber wrote on Aug 21^st, 2009 at 12:34pm:

I don't believe I experienced noticeable side effects with it - definitely not wooziness - I would've remembered that.

Yeah, right! Who was the idiot who said that??

Oh wait a minute that was me.   :-[

I'm back on the Neurontin myself now and it's got me a bit slow/stoned so far this time I'm afraid.  :-?

I've just finished the latest review of meds we use and this class of drugs doesn't come out very high on the pecking order.

I continue to feel that best policy is to use those meds with a well established track record for effectiveness and side effects, using the newer products only after the former products are found not to work for you.

No virtue in being a lab rat unless it's your last option.

Thanks bejeeber/Bob. 

The verapamil alone did nothing for me, even at pretty high doses.  I guess an "established" regimen would include Lithium before any of the anti-seizure (topamax/gabapentin) pills.  Is that what you're recommending Bob? I will go back to my neuro and re-evaluate

Verapamil + Lithium is a beast-killing combo for many around here, especially chronics. It worked like a charm for me for years.

Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive
and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
 
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ALL NEW!! HEADACHE 2008-2009
The new 72 page Headache 2008-2009 is hot off the press! Click here to download the PDF instantly! (free)

If you would like a bound copy, send $12 (includes shipping) to
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I used to take either 2700mg or 2900mg, whichever was the max.

I didn't have any goofy side effects that we know of, but that may have been masked by the condition I was suffering at the time...

Either way, within a few months side effects USUALLY wear off. As my allergist put it, I'm on enough medication to kill a horse, and certainly don't act like it. It just depends on if you can handle waiting for the side effects to wear off, is all. It DOES help with extreme nerve pain, though... If it didn't make me aggressive and crazy at this point, I'd start taking it again. (That was after about 9 years of use of it.)

PFDAN
Mystina

Hi Joshua,
I started taking Neurontin 6 weeks ago.  Side effects have been minimal.  Yes, a bit spacey , however clusters have ceased.  Will wean off these pills within the month. I have tried every imaginal holistic method of treatment.  Next to Oxygen, this is the only treatment that is working.  Stay on it and your body will adjust.  I take 3 pills right before bed and that works, as I sleep like the dead:)  I can't imagine taking more than one to two pills during the day. Hope this helps you.  Good luch

My family history has both migraine and cluster. Only med that has worked for me is Imitrex. If you haven't researched your family's headache predispositions, do so. It can't hurt to have that data.

hannahgittle wrote on Sep 7^th, 2009 at 8:54am:

Hi Joshua, I take 3 pills right before bed and that works, as I sleep like the dead:)

Oh!! 3 300 mg pills before bed? Is that the way it was prescribed for you?

Hmm I'm taking that kinda dose but spaced out thru the day - maybe that's the hold up here (2 weeks and it hasn't kicked in for me yet).

How long did it take to start working for you Hannah?