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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Good news about Topamax?  Anyone?
        
(Message started by: ilovesnow on Dec 26^th, 2005, 11:32am)

Title: Good news about Topamax? Anyone?
Post by ilovesnow on Dec 26^th, 2005, 11:32am

Hi there,
I haven't been around much sine my initial introduction a few weeks ago. The cluster continues and I'm going in for my MRA next week.

I've read most of the horror stories about Topamx on this site, but I'm wondering if anyone has anything positive to say about it? My doctor wants me to try it but I haven't seen anything here that sounds like it is even worth it. Thoughts?

Thank you [smiley=huh.gif]

Title: Re: Good news about Topamax? Anyone?
Post by Ann9900 on Dec 26^th, 2005, 9:55pm

I started Topamax just after Thanksgiving - 25 mg for 10 days, then up to 50 mg. So far, so good. I can't totally attest to how it has helped with the clusters - I haven't had a cycle since starting it, but it has REALLY helped with migraines. I have experienced some of the side effects - occasional tingling in my fingers, weight loss (yay!), and some dopeyness (haha!). By that - I notice I am having a harder time spelling some things - (I really had to look at "experienced" for a while up there). And I notice I need to write things down a little more often - mostly work-related notes about files I'm working on. I go back to my dr (at Diamond Headache Clinic) on January 9th. I'm not sure if she will increase the dose or keep it where it is for now since it seems to be helping with the migraines.

Let me know if you have additional questions - I'll try to help!

Ann

Title: Re: Good news about Topamax? Anyone?
Post by ilovesnow on Dec 26^th, 2005, 10:09pm

Thank you so much for your input! My dr had been talking to me about it and then I saw that free trial ad in the paper today and thought, why not? Nad, for ZGod's sake, SOMEBODY let me take a drug that has weight LOSS as a side effect! PLEASE ;;D I just keep thinking that I act strangely enough at work when I get the headaches, how much stranger can Topamax make me???

Thanks so much again for your opinions. I'll let you know how it goes for me...

Amy

Title: Re: Good news about Topamax? Anyone?
Post by Mr. Happy on Dec 26^th, 2005, 11:18pm

Topamax has a reputation for making everything you eat taste like stale hay. How you gain weight on it is beyond me, but I never chewed the stuff.
Topamax Joe was always a sketch, and rare treat while loaded on it. Couldn't find his smokes (in his shirt pocket), let alone his lighter. (Same pocket.) He's following different avenues (http://clusterbusters.com) these days.

He swore by the stuff, back then.
RJ

Title: Re: Good news about Topamax? Anyone?
Post by BMoneeTheMoneeMan on Dec 27^th, 2005, 12:02am

Hi I love snow.
I dont know a whole lot about it......cept it works for migraines! Just kidding. Quite a few people here have used it and you can probably get good reports and bad. I have heard from just about everyone that it does make you a little foggy in the head.
Have you tried some of the other preventatives?
RJ (Mr Happy) gave you a link to an alternative treatment website. I have used that treatment and although it didnt kill my cycle completely, it made it much much more bearable than with verapimil.
Your doc has diagnosed you with CH already and you havent even had an MRI? Has this doc done any other tests or scans to rule some other ailments out?
PF wishes to you. keep us abreast of your progress.
BMonee

Title: Re: Good news about Topamax? Anyone?
Post by CHTom on Dec 27^th, 2005, 3:54am

Dopeymax didn't do a thing for my chronic CH pain but fucked up my thinking and caused me to fall asleep at a very important meeting-hope that you have better luck than I did, heard that it works for some people.

Title: Re: Good news about Topamax? Anyone?
Post by ilovesnow on Dec 28^th, 2005, 12:13am

While I appreciate all of the "fucked up" information regarding Topamax, I was actually looking for something a bit more positive...that's why I titled the posting "Good news about Topamax." I can clearly read that many of you have had negative experiences with it and, while I'm very sorry to hear that, it can't be terrible for everyone. I am in search of people who have had good, or even just not negative experiences. No offense, but I don't really need the negativity right now. I'm past desperate.

And to BMonee, I have had several MRIs throughout my life cycle with these headaches and I have been diagnosed by every doctor I've ever seen in the past 9 years as having CH. I am now having an MRA to see if that tells another story. I have tried most medications and herbal stuff and nothing seems to help. The best anyhting has ever done in the midde of a cluster is break it into little bits. I compare it to mercury when a thermometer breaks...you think a big splash is coming but instead its little bits bouncing around. I've done the prednisone, butalbital, verapamil, imitrex, o2, lithium, melatonin, kudzu routes and still can't get anything to give me relief. I'd be homeless if I used Imitrex as much as I wanted to.

Thanks for the info and sorry if I came off as crabby back there. Just tired (no sleep of course) and really needing some good news!

Title: Re: Good news about Topamax? Anyone?
Post by Mr. Happy on Dec 28^th, 2005, 1:56am

on 12/28/05 at 00:13:22, ilovesnow wrote:

No offense, but I don't really need the negativity right now. I'm past desperate.
I've done the prednisone, butalbital, verapamil, imitrex, o2, lithium, melatonin, kudzu routes and still can't get anything to give me relief.

It's not negativity, it's realism. Look at the list of crap you've taken. Topamax may be a magic bullet for you......if not, then listen to the side effects folks. It's been effective in some of the strangest damned cases, and utter failure in others.

Good Luck. You'll be the first to know.
RJ

Title: Re: Good news about Topamax? Anyone?
Post by llreed on Dec 29^th, 2005, 8:13pm

Hi - Currently taking Topomax but have only been on it for a week just now stepping up the dose to twice a day. No change on the CH but sometimes these drugs can take awhile. Don't feel real bad - just tired and really sick of my head hurting..... but who here isn't.
Hang in there - this could work for you. :)
llreed

Title: Re: Good news about Topamax? Anyone?
Post by ilovesnow on Dec 29^th, 2005, 10:34pm

THANK YOU! I start tomorrow. I'll let you know how it goes for me. I spent the day in the ER with an IV drip of Nubain. I wish I could just drink that stuff!

Title: Re: Good news about Topamax? Anyone?
Post by Ann9900 on Dec 29^th, 2005, 10:51pm

A couple of afterthoughts on my experience so far...

The weight loss - yes, it does seem to be from food not tasting as good (as opposed to some metabolic reason). I don't think I could have the attitude "Hey, I'm on Topamax, so I'll just eat what I want" and still lose weight. I think it is just that I don't feel like eating. A few days after starting it, it was a weekend. That day, I ate just my three meals, no snacking whatsoever. It was kind of weird. I just didn't feel like eating. Food does seem a little more bland, but not terribly bad. I wonder if it gets worse as the dosage increases though.

The dopeyness - It seems to me that my fingers just don't quite move right - especially when handwriting things (even my name). I just handwrote a long note to someone and had to really take my time to make sure I got all of the letters in there. As for typing, it just seems like my fingers aren't quite where the should be - like when I went to type "right", I started out with "wri" (like I was going to go with "write"). So it is like my brain is thinking the correct word, but isn't sure which version to use. Does that make sense?

Headaches - I was diagnosed with clusters (fortunately only about a cycle a year) and migraines (1-2 a month when on inderal as a preventative). I thought I had some tension headaches mixed in too because I would have 3-4 days a week of mild pain, nothing too severe. I'd usually end up taking some over-the-counter stuff and not really having it work. But I never thought the headache was serious enough to warrant stronger meds. Once I started the Topamax, we found out that those 3-4 headaches per week were actually migraines too. Those have virtually disappeared. That is the biggest positive I have for Topamax so far. Like I said in my first post, I don't know what its effect is on my clusters, but any time my head hurts less, I'm happy. (Aren't we all?)

Title: Re: Good news about Topamax? Anyone?
Post by llreed on Dec 30^th, 2005, 9:57pm

Hi Ann9900 - How long have been on the Topomax? Personally going into my second week w/ a double dose and soda is tasting funkie - my hand skills are still okay. But still getting 2 CH attacks a night. Also on Tegretol.

ilovesnow - sorry for the trip to ER but I'm glad you got a break. I beg my husband to take me alot but we know by the time I get there that it may over or the idoits won't know what to do..... >:(
llreed

Title: Re: Good news about Topamax? Anyone?
Post by Ann9900 on Dec 31^st, 2005, 11:12am

llreed - I started it just after Thanksgiving. 25mg for 10 days, now 50mg.

Title: Re: Good news about Topamax? Anyone?
Post by llreed on Dec 31^st, 2005, 1:03pm

Ann9900 - YEP ( Memory Loss must be a side affect) you already answered my question in the thread - sorry about that..Hee Hee... Food still taste okay, just not eating as much of it but when I first started some of the meds I put on 18lbs, not that anyone thought that was a big deal considering my weight before.... :P**Still no Improvement with the CH yet but I have a nasty feeling the Imitrex isn't helping - thanks to a buddy I get an O2 tank on Tuesday (I'm soooo excited!!!!)
Hey ilovesnow - still kicking?
Wishing all PF Lifes :)
llreed

Title: Re: Good news about Topamax? Anyone?
Post by lindysmom on Dec 31^st, 2005, 7:05pm

I'll do what I can to be positive for you snowlover. I have recently had to take more control of my neuro and my reg. doc and strangle both of them...now we make progress [smiley=laugh.gif] Anyway...I have been taking dopeymax for about five months. In the beginning we really did call it dopeymax around here...my husband did not let me drive for the 1st month, thank god for my home office. I had what we like to call mild altzheimers. Spelling, word retreival issues when speaking and memory of the short term variety seemed to be the biggest problem. That was during the 25mg to the50mg and up tp 100mg phase. We stayed at 100mg for three months even though I was going through Axert (my preventative at the time) like it was candy because the topamaz wasn't really that effective. I guess they were all afraid that I would really slip off into side effect land and never come back. Honestly, I didn't care. I wanted relief. In reality, I also wanted to be a part of reality and be able to work and pay bills but I really wanted relief so I DID NOT care about side effects. Since my CH happened at night like clockwork, and the Axert with the topamax helped to make them more tolerable (with 3 visits to ER)...well needless to say my body just adjusted to the stuff. Went to the doc this past Wed. and now we are upping the topamax to the smallest effective dose. Once we get to 400mg a day (if I need to get there) I need to wean off and try something else. But all in all it has been tolerable and helpful. I have now expeienced finger tingling and on the tip of my nose and around my mouth but only if I have a glass of wine at night. Figured that out the hard way. I am interested in going all of the way with topamax to see if it will be the one for me and if I can continue to adjust to the side effects. So far I have been lucky that they have not been severe....drink PLENTY of fluids....no kidney stones. As for weight loss....I have had some...not like I hoped for, but my neuro said that it really comes after 150mg a day. Food does start to taste a little different and I crave different things. I always want fruity soda for example, not colas. Salads and lighter fare like fish and stuff not heavy, creamy, sit in your belly food. It is really weird. Your appetite decreases as well. I have to be very mindful of if I have eaten at all in a particular day otherwise I am likely to eat only when my husband and I sit for dinner and then I'll just pick and chat with him....just not hungry.

Sorry for going on and on...but I guess I have quite a bit to say about topamax and what I hope it can do for us. Good luck with it and my orayers to you for PF days and nights.

Title: Re: Good news about Topamax? Anyone?
Post by E-Double on Dec 31^st, 2005, 7:39pm

Mom,

There really wasn't anything positive in your above post.
Going to keep going higher with the dosage yet still having all the adverse side effects as well as your attacks and trips to the ER.

It's your personal battle but if it were me......
Well, that's why I came off the stuff.

Good luck to you all!

E

Title: Re: Good news about Topamax? Anyone?
Post by llreed on Jan 6^th, 2006, 9:58pm

Just an updated,
Week 3 on the meds. Haven't had a CH in 5 nights now. ;;D Not sure if I'm at my end or if I did something right. I can tell you I don't really care for the side affects. The taste of food is getting wierd and my speech is tied up. I've had to slow down with typing @ work so I don't make as many mistakes. Just feel off... I have another week before I see this new doc. maybe he can suggest a new preventative. Sorry I didn't have a better report for the med. My head hasn't hurt in 5 nights - take the good with bad.
PF Wishes
llreed

Title: Re: Good news about Topamax? Anyone?
Post by Karla on Jan 7^th, 2006, 6:52pm

I tried it at 200mg for a couple of years and it did nothing for me except make me stupid. (I stayed on it so long because a medicine I took caused me to have seizures. Rather than discontinue the med I was added Topamax) Then a pain /HA specialist suggested 900mg. I tried that for a couple of months and had no luck except making me more stupid.

Title: Re: Good news about Topamax? Anyone?
Post by sandie99 on Jan 11^th, 2006, 3:20am

If topomax works for you, I'm glad. :) PF time is always wonderful! What doesn't work for one, works for another. I hope it keeps on working and that there won't be that much side effects.

Dopeymax didn't work with me, though. It looks like that you had easier start than I did - my first week on topo I had 24/7 regular HA. Then I had ch hits up 11 times/day. I'm not telling you this to bring you down, though. Every Ch sufferer deserves a med or treatment which works. I hope that you've found yours. :)

Best wishes & lots of PF time,

Sanna :)

Title: Re: Good news about Topamax? Anyone?
Post by sarahmom on Jan 11^th, 2006, 8:21pm

Dopamax worked rather well for me (at a higher dose). I was taking other meds w/it too (verap and so forth). However, I had to find an alternative to the dopamax because the confusion and slowness in my thought process became a real problem. I lost quite a lot of vocabulary as well. I have not regained my vocabulary entirely (I still feel pretty 'duh'), and my thinking is not back to the way it was. I was given a different drug that works the same as dopamax (Zonegran), but w/less confusion, concentration problems. Best of luck to you!

Title: Re: Good news about Topamax? Anyone?
Post by Gena on Jan 12^th, 2006, 5:27pm

Topamax worked for me - with only a few side effects -

I love my topa ;;D

It broke a year long cycle for me I have been mostly med free and CH free from the end of april 05

Title: Re: Good news about Topamax? Anyone?
Post by nancyc on Jan 15^th, 2006, 9:07am

I have been on and off topamax so many times in the last four years I have lost count. I am chronic. Topamax does stop my chs but the side effects are pure hell for me. I will stay on it for awhile cause I cant stand the pain anymore...then I have to come off of it because I cant stand the side effects anymore. Wish I could be more positive but I cant. IT works for me, but I hate the crap. Hope your body adjust to it better than mine. In fact, I just started back on it about two weeks ago because I could not take this pain anymore..it has not kicked in this time but praying really hard that it will....Good luck to you. smiles,nancyc PS Barb D had good success with Topamax. I know she stayed on it for a long time. Not sure if she is still on it or not.