I suffer a cluster once every 14 - 20 months. Last year, I got killed. The cluster lasted three months, worse than ever before. I tried Pred., RC seeds and Imitrex, with little success. My very sympathetic GP sent me to a Neuro who asked me to try Topamax. It stopped the CH cold with only 25 mg. I recently started having shadows and the Topamax seems to be helping. Anyone else have success with Topamax a second or third time. In my case, I can have success with something once or twice, then suddenly it doesn't work anymore.

Last year, it ended my cycle. This year, it has ended my shadows, don't know if the big guys have started yet. I know, it's hard to believe. I tried Verapermil once and it did nothing but make me constipated. Imitrex nasal spray worked wonders for about two years, then stopped working altogether. Now I have injectables just in case. My deck has six large tanks of oxygen that has always helped a great deal. Topamax, 25 mg. it's hard to believe that it's working. Even at 25mg. I can't remember shit. Perhaps my system is very sensitive to it.

Well, after 4 months of this stuff I am now fed up with it. The side effects are just a little too much to handle. The attacks are gone yes, but the personality changes (aggression, depression) are alone too much. Ask my wife, she'll tell ya. I can't remember chord progressions, scales, modes, or simple little songs on the guitar. It's taken me 15 minutes to get this typed so far. I feel like a labotomized ape. I'm starting the withdrawal off Topamax myself because I am between doctors yet again. Slowly is the key 25 mg/week down should do the trick. I'm only at 100mg per day.

At first I was ok with it. It was working and the side effects were manageable. But after it built up, and we went down to the 100mg for a maintenance dose it is still just way too much for me to handle. Anything less and the attacks are still there as well as the side effects. So I'm stopping.

I hope it works for you! We all need that magic item.

PFDN to y'all
Eric

Newbie to the board, been part of the 'club' since mid teens, now I am 34 (next month)  Has anyone grown out of these?  Please?  Need hope!

I think I am going to join the Topamax club.  Sansert isn't available anymore.  My CH cycle is about 3-4 months out of the year, during that time I have a month of 9-10s.  Very lucky by some standards.  By the looks of my 2007 (and only) diary, my cycle started in September.  I have had a few days of 1-3s and one full day of a 2-3.  Nothing today, thank God!  I just know that my cycle is getting ready to hit.

I have tried Imitrex and Toredol (sp?) in the past with zero help.  It just made me real tired with a real bad headache.  I was finally diagnosed in 2000 by an Army doc.  He put on O2 for 15 mintues and WOW!!!   I LOVE IT!!!!  I am lucky enough to work in the medical group so I can get O2 while at work.  Now, I would like something that would do away with them (yeah, like everyone else!) or at least lessen the hit.  I can't take O2 with me when I go TDY (travel for business) and would like something to get me through.  The side effects of Topamax suck, period.  I am hoping that my Dr will be OK with very low dose (25mg once or twice a day) until a no kidding hit and then ramping my up to whatever....100mg (50mg twice a day?). 

From the Topamax junkies, any suggestions?  I am going to tell myself that I won't have any side effects, except the weight loss!  Maybe mind power will 'will' them away.

After re-reading this it seems like a ramble (so Topamax should be fun, right), but it is getting too late to re-type it.

Guys I think I am the most weird person in the world.  Everyone is encouraging me to get off of Topomax.  I currently am taking 400mg a day.  I just don't think meds have the same affect on me as they do on others.  I am also on 480 mg of verapamil and 600 mg of lithium and don't have many of the side affects of it either.  I cannot say, however that either of these dtop my cycle that is the bad news.  However, when not in cycle I have tried to taper off and after a few days, I get hit.  Now when not in fully cycle (which I am in now) I drop my Topomax down to 300mg and maybe as low 200mg.  I have talked with others that say the same as the posts do, that Topomax, in addition to weight loss (mine off set by the lithium and verapamil) makes them dumb as mud, very lathargic etc.  I am an attorney by profession and therefore cannot be either of the foregoing.  For some weird reason my body tolerates these meds.  I have while taking these meds gone for long periods of time without being hit.  I have no way of knowing if it is the meds or if the beast just took a rest.  My only indication or sign was just when I tried to remove one of the meds and in each instance after a few days I got hit.  Not a 8-10, more like a 5-7, but still a hit, so I increased my dosage back to where it was and no more hits until the next full blown cycle.  Therefore I have no idea, other than I feel like a friggin junkie which I absolutely loathe, but afraid to get off the meds.

Hey, if Ernie wants to be weird, let him! He'll have to go some to catch up with some of the rest of us around here, but I say go with dog, young man.

Guild, I was on the Tope during my latest cycle and it worked wonders after it kicked in. It was my first shot at it so I can't say what will happen next time. The side effects are terrible, I agree - although I didn't mind the loss of 12 pounds which have stayed off - but our friend CH is so much worse that I accepted the lethargy and general zoned-outness. And Ernie, I'm a writer by trade so searching for simple words all the time was no hubcap. I mean, salamander. Or is that picnic?

David

CostaRicaKris wrote on Aug 13^th, 2008 at 12:09am:


I had a hard time just remebering where the computer was on 100 mg a day.

  I'm chronic, and have been on a 100 Mg. /day maintenance dose for about 2 years. If it wasn't for my calenders, Post-It notes, PDA and Chris I wouldn't have a memory. I haven't had any of the other side effects.

For all the folks that have tried T-Max and had the bad side-effects(s/e), how long were you on it and what dose where you on when the bad s/e started?  I am on 25mg once a day and will start 25 mg twice a day on Monday.

Derek P wrote on Aug 22^nd, 2008 at 10:12am:


Derek, the side effects began pretty much immediately for me, on an  initial dose of 25 mg x 2 per day, then upped to 50 mg x 2. After about 3-4 weeks the worst of the effects lessened, but they never went away completely. I'd say it took a week or two after I stopped before I felt normal again.

But it was all very much worth it.
David

Ernie-you may be getting rebound headaches from taking these drugs. Best to get off them ASAP if you can tolerate the pain.

Also 400 mg of Topomax seems excessive when I found that 25 mg/day for 2 weeks worked wonders for me  but gave me bad side effect (internal bleeding). I can't understand your doctor prescribing that much, but then again they don't have time to study what they prescribe. Best to talk to your pharmacist....they know drugs better than doctors do.

Hope you break your cyle soon.

Hello.  Newbie to the site here.  Have been clusterhead for about 3yrs and on topomax for almost the two years now at 150 mlg a day.  Have what I think is a good neurologist who thinks the ch are prob chronic since I always have a type of shadow daily but the topomax seems to keep the ch from actually breaking through.  Don't experience significant memory loss, but some.  Curious about how you all who use the imitrex use it.

Guild, Perediablo, & All,

Please have a look at the thread that Cyndi started, entitled "Kilowatt3!".  Read it.  Try it.  You just might get a pleasant surprise!

GL & PFDAN
Jim