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.

Topomax has helped me to lessen the frequency and intensity of attacks, but it takes weeks to build up in my system and I take 150 mg a day. It's certainly never "stopped it cold" Are you saying it ended your cycle or aborted an attack??

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.

It's too soon to make assumptions. With some success, would be worth talking to the doc about a modest dose increase and see what happens.

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

Your response is one of the reasons I've been unsatisfied with how quickly Top. has been adopted by some physicians. There are other meds to try first, meds with a clear track record.

Use these materials to have a discussion with your doc.
----------


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)
 
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
============================================

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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
Robbins Headache Clinic
1535 Lake Cook Rd.
Suite 506
Northbrook, Ill.60062

OR call 847-480-9399 to use Visa or Mastercard.

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. :-[

Hey Derek,
Topomax isn't the most popular med around here because of the side effects, but it has been helpful for me. (150 mg a day) My first cycle with it I started ramping up from 25, now I start out at 50. I think the side effects get better with time, but I may be just talking myself into that.  :D

If you put this post in a new thread in the "getting to know you" area, you'll get more welcomes and lots of advice from those who have been around longer and know more than me.

Welcome
~Kris

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.

Ernie,
I continue to take Topomax as well because I have fewer and less painful hits. 400mg sounds like a lot, but I'm not a Dr. You're right, we all have different levels of tolerance and what works for one person may not work for another.

You don't sound wierd to me at all   :)

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

I took topamax at high dosage like ernie, but after six years I found it hard to remember things. i felt very incompetent at my job and didn't realize it was topamax (little thing the dr left out). I just started imitrex injectable wow does it help. topamax did help with frequency and severity but the side effects after long term are not fun.

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

Ernie, I continue to take Topomax as well because I have fewer and less painful hits. 400mg sounds like a lot, but I'm not a Dr. You're right, we all have different levels of tolerance and what works for one person may not work for another. You don't sound wierd to me at all   :)

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

wrote on Aug 13^th, 2008 at 8:59pm:

I took topamax at high dosage like ernie, but after six years I found it hard to remember things. i felt very incompetent at my job and didn't realize it was topamax (little thing the dr left out). I just started imitrex injectable wow does it help. topamax did help with frequency and severity but the side effects after long term are not fun.

As soon as my wife found out about the memory loss side affect of Topamas, she said, if you take that, we're done.  My memory is bad enough without drugs, LOL!  I'm a plain old Imitrex guy that up to this point is my only line of defense other than icepacks, meditation and staying away from the triggers.  I have a shadow right now as I type this because I had a k5-6 about 11:30 last night and the shadows have yet to leave.  Lets hope it's a good day at work.  

  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.
[smiley=smokin.gif]

I took 25 mg/day of Topomax for 14 days & my CH cycle seems to be gone. This was the first time I've used it.

Side Effects: minor  bleeding in diarreha but this could have been caused by a couple Frova pills I took during the first few days of the 14 days.

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.  

What Perediablo said!

I had the very same problem!  It made me feel like a zombie. I was only taking 100 mg a day.I could not remember cords, my picking was all screwed up. I stopped practicing for 3 weeks. Couldn't do it!
To add insult to injury, Cluster makes me very noise sensitive.
I'd have to sit WAAAAY away from my practice rig. (A Blues Jr. set on 3!). I could only practice for about 15 minutes and I'd have to quit.
and I had allot of 'bleed through' on the Topamax.

Topamax...Not for me!

Wish you luck.

Vomact

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

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?

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

I've no experience with topomax,  but If it makes ya stupid and ya poop blood it can't be too good for ya.

                 Potter

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.

I just started my second daily 25mg dose tonight after one week of one morning dose.  I haven't noticed many side effects other that carbonated drinks don't taste as good, I miss Diet Pepsi and Miller Lite!  I have slept better at night...at least slept harder.  I am extremely early in my CH cycle so I am not sure how much it is helping.  The CHs that I have had haven't gotten past a 2-3 so that makes me happy!  I have had the 16oz Monster Blue (lo-carb) drinks  :D  a few times I have had a CH, just in case it might help also.  I'll post my updates if this thread stays active.  My best to you all!   :)

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.

Hello Mick, and welcome. You've come to the best place in the world for people like us.

I used Topamax in my most recent cycle for the first time and it helped immensely, albeit with the mind-numbing side effects many report.

I also have a supply of Imitrex pills on hand and used them occasionally at the beginning of my cycle when the Tope hadn't kicked in yet. Also got a one-off CH a few weeks ago and popped a trex for that one too, even though the cycle had ended in July.

I hope you've tried oxygen though - can't recommend it enough!

PF times to you.
David

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

Geo I had not thought about rebound headaches from the meds.  Since my post I have backed off my topomax to 300mg and will slowly back on down.  However, I must say the topomax was the one med when added several years ago that broke my cycle.  I still believe my body is just weird as I just don't experience the side affects.  Not knocking what anyone else does, but as an attorney I have to be on my wits every day most of the time 10 hours a day still at 60 and at 400mg of topomax and all of the other crap I have not had the dumbness etc., but by the same token I wake up at night taking 15mg of melatonin too.  Trust me I want so badly and am working toward be med free and thanks for your support.  Wishbone.

Thanks Balanchine, glad to hear from someone else who can tolorate the topamax as well.  Also thanks Kilowatt, may need the recipe someday.  The topamax works well for me at this time, been on it for a couple of years.  However, I really don't know if I'm chronic or episodic, as I've never been through a real remission before going on the topamax.  The CH just arrived one day about three yrs ago and it was almost six months before the doc sent me to a neuro who got me on the topamax before I found any relief and CH were d & n non stop.  What many call a shadow I have to assume is what I have always called a 'curl'.  A kip 1-2 pain inside my right eyebrow or head (I once thought I had a brain tumor, or had broken my radial bone  [smiley=confused.gif] ), that used to proceed the CH, but since the topamax is just a constant dull reminder that I can still get hit occassionally. However, the curl/shadow is there almost 24/7.  Wonder if that means I'm chronic w/o the preventative topamax?  Anyway, I'm very happy to have found this place and wish all the best.  I'm very lucky myself at this time to be virtually PF and have only some mild side effects. :)

Glad it works for you, Mick.

Yes, I understand your conundrum. When I'm in cycle I have a continual dull pain at all times, that flares up into the killers with the same regularity that many here experience. Even now, more than a month past the end of the cycle I feel as if my right ear and half that side of the head were stopped up. Part of the fun I guess.

David