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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Topiramate
        
(Message started by: roy21302 on Aug 2^nd, 2006, 12:56pm)

Title: Topiramate
Post by roy21302 on Aug 2^nd, 2006, 12:56pm

Hi
I have just seen my consultant and she has put me onto TOPIRAMATE 12.5mg building up over a period of several weeks to 100mg. I believe that this stuff is called TOPAMAX on your side of the pond. Can anyone tell me if this stuff works, anything to watch out for, any concerns---- any info would be most welcome. At the same time as taking this I have to reduce my verapamil and can continue to use Imigran injection if needed. I am Chronic and at the moment in a very bad patch-----------------------------------------Cheers Roy [smiley=huh.gif]

Title: Re: Topiramate
Post by E-Double on Aug 2^nd, 2006, 1:01pm

you can be on both meds.

some of us do very well on topamax while others have a really rough time.

Good luck and keep us posted

Title: Re: Topiramate
Post by vig on Aug 2^nd, 2006, 1:40pm

but write your name down on a card and put it in your pocket, in case you forget EVERYTHING!
;;D

(It's also known as DopeyMax, and you will probably start feeling retarded.)

Title: Re: Topiramate
Post by Bond007 on Aug 2^nd, 2006, 6:04pm

I take 200 mg of Topamax daily. The biggest thing I noticed right at first was my lack of appetite. You'll want to watch that. Make sure that you do eat as it can stifle your appetite and you can lose weight. Also, carbonated drinks will tend to change in taste. I've also noticed a change in taste of other sweetened foods. It's also lowered my BP, so if you a low BP you'll need to watch that, too. Your doc will draw blood to test periodically for liver and kidney function just to be safe although the risk is low. You may also experience tingling in your extremities (hands/feet mostly) as you increase the dosage. That tends to go away as your body adjusts to the new dosage level, at least mine did. It may make you drowsy. It did for me at first, but the longer I stuck with the drug, the less the drowsiness affected me. Dry mouth is another big one. Drink lots of water! I got serious dry mouth when I had to increase to 200 mg a day. It was unreal how thirsty I was all the time.

But, like I said throughout, the sides all affected me as I titrated up in the dosage, but waned as my body adjusted to the levels. I did feel a little "dopey" at times as well, but that too faded with time.

Overall, I think the drug has helped with the intensity of the HA's. But, the attacks are still frequent and their duration has't changed much until today. I've actually skipped "regular" headache times. Now, I'm scared.......

Title: Re: Topiramate
Post by Squanto on Aug 2^nd, 2006, 9:42pm

Some folks here have gotten good results with Topamax. I wasn't one of them.

Things to watch for:
1) kidney stones (as was said before - increase your water intake)
2) increased ocular pressure (glaucoma)
3) cognitive difficulties ( I couldn't do simple arithmatic in my head, I had trouble concentrating, and such)
4) ataxia (stumbling wide based gait, couldn't stand on one leg to put my pants on, my golf game went South because I couldn't stay steady over the ball, and such)
5) weight gain
6) depression (my libido went to zero)
7) I felt (and probably acted) "stupid."

"Other than that Mrs Lincoln, how was the play?"

Topamax made NO change in my headaches (I'm chronic.) I hope you have better luck.
Squanto

Title: Re: Topiramate
Post by TimJohnson on Aug 2^nd, 2006, 11:49pm

I tapered up my dose, at 25 mg to 100 and then I rapidly went to 200mg as well. I go as high as 400mg when in cycle and then taper back to 200mg per day.

Title: Re: Topiramate
Post by roy21302 on Aug 3^rd, 2006, 5:46am

To all who have posted replies so far, thanks very much, it is so good to know that so many are ready to help with information. I will keep you updated with how it goes. In the meantime any other advise or tips would be welcome. Cheers Roy :)

Title: Re: Topiramate
Post by Bond007 on Aug 3^rd, 2006, 8:55am

Squanto makes some VERY valid points that I did miss, especially the cognitive difficulties, ataxia, and the plain feeling of "stupidity". I actually had to resort to having my wife double check my math on restaurant bills to make sure I didn't inadvertently overtip someone, which I did on a couple of occasions. YIKES! But, also, like I did mention, those types of sides did eventually subside with time.

Title: Re: Topiramate
Post by Katherinecm on Aug 3^rd, 2006, 10:03am

I took this for quite a long time, and it helped me the most of any drug so far. The first thing is, while it is effective, the side effects are too much for most people to handle. So how to reduce the side effects or control them is the thing you most want to think about. In my case the side effects were always so much easier than CH it was worth it.

***the most important one for women: IT WILL INTERFERE WITH HORMONAL BIRTH CONTROL METHODS IN SOME WOMEN*** It took me a few months of unusually high drives and spotting to figure this out, and two doctors and one pharmacist denied it, but one day I went in to the pharmacy at a different time and a different pharmacist warned me that in SOME women it DOES interfere with birth control.

The most pleasant side effect: sleep.

The most annoying for me: visual side effects, tremors, weakness, an inability to come up with the word you want, loss of verbal ability, loss of short-term memory, loss of balance, loss of taste, and a general sense that you are either elderly or on drugs. ALL OF THESE SIDE EFFECTS ARE A SIGN YOU ARE TAPERING UP TOO QUICKLY. Call your doctor, knock down 100mg for a week, have them write a script for 25 mg, and taper up 25 mg a time as your body allows.

The longer I've been on it the more thirsty I got and the less I like the taste of anything carbonated or acidic. I always obeyed that and tried to drink lots of water, I never had any problems with acid the way some do.

I have vacillated up and down between 100-600 mg/day. I think I had the best effects at 400 mg/day. At 600 mg I hit a threshold dose where I was not only lethargic and sleeping 12 hours a day, I started having intense attacks again several times a day. I'm now back at 200mg day but I'm thinking 400 mg was better.

Title: Re: Topiramate
Post by roy21302 on Aug 3^rd, 2006, 12:54pm

Thanks very much, keep it coming it will all help me ---------Pain free days to all ------------------------Cheers Roy

Title: Re: Topiramate
Post by Karla on Aug 3^rd, 2006, 4:21pm

The expert drs at the OUCH convention in Milwaukee 7/2006 stated that topamax needs to be incrimented by 25 mg every 2-3 weeks. If you have problems it will be because it was not tapered slowly. it can even lose its effectiveness if gone up to fast. 150-200mg is the theraputic range. Although my specialist neuro from the ha/pain clinic had me retry it at a very slow taper up to 600mg. I still had no luck with it. It can make you very stupic and have terrible side effects. Good luck with it.

Title: Re: Topiramate
Post by smfaison on Aug 6^th, 2006, 10:12am

Hi Roy,

Sorry to hear that you are in a bad patch. I am an episodic clusterhead. I have been on Topamax for a couple of months. I think I did the same routine because I am taking 50mg twice a day now. I have some side effects, but I am willing to put up with just about anything to keep the headaches at bay. I have some facial tingling and also some in my hands and feet from time to time. That is about all I have noticed. I also take Relpax for when I get a headache anyway which seems to work real well for getting rid of the headache. This is the mildest spell I have ever experienced. My spells usually last 4 months and I am about 2 months into it. I have had about 6 headaches so far and they have been moderate so far. I am liking the Relpax over Imitrex because I do not get rebound headaches with it. I am "bulletproof" for 18 hours after taking it. Hope this helps and good luck! :)

Title: Re: Topiramate
Post by roy21302 on Aug 6^th, 2006, 6:07pm

Thanks for your posting will keep watching and reading-----no side effects noiced at the present time, did get PF night last night -----won't build my hopes up too soon-----------------------------------------Cheers Roy :)

Title: Re: Topiramate
Post by roy21302 on Aug 11^th, 2006, 2:14pm

Just a short up date for anyone who see it, now 9 days of taking it and have managed the last 3 nights PAIN free, just had very minor hit about 1 hour after waking. I will keep going ------------------------Cheers Roy

Title: Re: Topiramate
Post by LeLimey on Aug 11^th, 2006, 4:45pm

Roy that's fantastic!
I'm really really pleased for you :)
Hope it keeps up
Helen

Title: Re: Topiramate
Post by kcopelin on Aug 11^th, 2006, 6:30pm

Way to go Roy! Glad you're getting some sleep.
Keep us posted, okay?
best wishes for PFDAN
kathy

Title: Re: Topiramate
Post by JBC on Aug 16^th, 2006, 1:42am

Hello everyone!

Topamax has been sucessful to me: made my CH less frequent and less severe episodes.

I had been on Topamax for several years, and then I noticed that I was recently rapidly having cognitive difficulties. I forgot many simple things.

I am also on Verapamil, which helps. I had to taper off of Topamax and I have no imrovement in my cognitive problems. Doc put me on indicin.

Title: Re: Topiramate
Post by roy21302 on Aug 17^th, 2006, 3:04pm

Just a brief up date, now 17 days of taking these pills, some minor side effects, but have managed 6 night Pain Free up until last night when I got hitby a kip10 at 3am it lasted about 40mins and I have been OK since. I will continue and let you know how it goes. Its so weird sleeping all night!!!! ---------------------------Cheers Roy ;;D

Title: Re: Topiramate
Post by roy21302 on Aug 25^th, 2006, 5:04am

Hi all, I am now at about day 23 of taking these, I have noticed that I have been very grumpy(wife says normal), and whilst staying pain free at night, the last 3 days I have been hit on waking by about Kip 4-5 lasting for about 30 minites. Then I am OK for the rest of the day. I intend to keep going and slowly increase the dose and see what happens, here to PFDAN for all------------------Cheers Roy [smiley=huh.gif]

Title: Re: Topiramate
Post by LeLimey on Aug 25^th, 2006, 5:19am

I hope your success with it continues Roy ;;D

Title: Re: Topiramate
Post by roy21302 on Sep 12^th, 2006, 11:36am

Hi Everyone,
I was not sure wether to drag this old thread out or start a new one.
I am having great success with this stuff but have started experience really bad itching it is on my upper arms across my chest and back, and very persistant. Has anybody else had this when taking Topiramate. It is driving me crazy, and before you ask I have had showers etc. but any useful suggestion would be welcome before I go to the witch doctor. Cheers Roy [smiley=huh.gif]

Title: Re: Topiramate
Post by roy21302 on Sep 13^th, 2006, 1:13pm

[smiley=huh.gif]Cancel the above this is a heat rash saw the witch doctor this morning, appears to have been caused by this unseasonal hot weather -------------------------------------------------CDheers Roy :-[