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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Topamax isnt working...should I give up?
        
(Message started by: AndieKay on Jan 31^st, 2007, 11:05pm)

Title: Topamax isnt working...should I give up?
Post by AndieKay on Jan 31^st, 2007, 11:05pm

Ive been on topamax for two weeks now and I swear every time I increase the dose my headaches get worse. I am currently a full-time college student and my cluster headaches excuse isnt going over too well with most of my professors who have no idea what I am talking about. I am starting to get behind in my classes and this is very frustrating for me since before my cycle hit I was a very driven and responsible student and it's like two weeks ago i just hit a brick wall. Im phsycially and emotionally drained. When I am not in pain or passed out from medication I am in the library trying to get caught up on work. The only problem is the topamax makes it impossible for me to concentrate. It seems as if my short term memory is dwindling away. I have a very hard time reading and retaining information. I want more than anything to be able to return to a normal, productive college student. After 14 days you would think I would notice at least a small change in the intensity or frequency of the headaches but theyve only gotten worse. I just started a medrol dose pack the other day to give the topamax a few more days to build up. I had my first pain free day in 12 days thanks to the prednisone but unfortunately the dosage is starting to taper and I already woke up this morning with a headache! I am convinced the topamax is not going to work even once I get a good level built up. Even if it does start to work once I am able to take a higher dose Im pretty sure I will no longer have the mental capacity of a college student. I am considering just giving up on the topamax and going about other treatment options with less side effects. I am also using 50 mg imitrex pills and the nasal spray as abortives but I am going through those like candy and insurance is done covering for awhile so I need something asap. If anyone has any suggestions on what I should do please help!

Title: Re: Topamax isnt working...should I give up?
Post by MJ on Feb 1^st, 2007, 12:06am

Andie

This is just my opinion, surely someone may disagree.

If a medication is affecting your life beyond clusters its not the medication for you.

Secondly its easy to fall into the trap of believing that eventually it may work, and I would think by now you should have seen some improvement if the topomax was going to help. Dump the med as one tried and get back to living right.
Check with doc as there may be a required method of stopping use.

Then check out clusterbusters.com and read there as well.

Title: Re: Topamax isnt working...should I give up?
Post by sandie99 on Feb 1^st, 2007, 6:06am

AndieKay,

I'm a student also. :)

I know exactly how difficult it is to study when ch is around. Give yourself time to do the things you need to do and don't give up. Have you shown your professors/tutor/course leader the letter for collagues and friends, which is available on this site? That might help a little bit.
If you want to talk about it sometimes, feel free to IM/email me.

What comes to topamax, it didn't help me. What you wrote about memory sound familiar. (In my case, I felt I lost mine!I recall walking to somewhere and then I didn't recall why...) If it makes your headaches worse, its not worth it to keep taking it - I got hit 11 times for the first time thanks to it.

Wishing you lots of PF days,
Sanna

Title: Re: Topamax isnt working...should I give up?
Post by FramCire on Feb 1^st, 2007, 7:03pm

I would certainly suggest bringing the letter to your proffessors or go visit your Dean of Students with it. Ask him what he reccomends.

I would also look to try and get a script for O2 and/or another abortive like cafergot .

I don't like topamax at all. Lithium, verapomil, and there are others. Does your school have a hospital associated with it? See if there are any nueros or headache experts in there. You might be able to get some lucky help there.

Keep your head up. If it gets much worse, maybe drop 1 class and see if you cant make the others work for you.

That last suggestion is a last resort. Remember.... your cycle could end at any time!!!

Title: Re: Topamax isnt working...should I give up?
Post by Karla on Feb 1^st, 2007, 11:46pm

You are telling us about a very common side effect of topamax. Nick named dopamax around here. You are suppose to increase the dose by 25mg every 2 weeks and do this real slow to avoid kidney stones and other side effects. I went up to 600mg and had no luck with it helping ch or migraines. I would tell your dr you can't function like this and ask to go off of it as soon as possible. Good luck!!

Title: Re: Topamax isnt working...should I give up?
Post by Bob_Johnson on Feb 4^th, 2007, 8:13am

Absolutely! Discuss your options with your doc. Even the best meds for us do not work with 100% of cluster folks.

http://www.headachedrugs.com/pdf/ha2006.pdf Dr. Robbins site. Then explore the entire site by deleting everything following. com/ and then hit enter.
=========================================================================
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)

http://www.brightok.net/~mnjday/chtherapy.pdf

Title: Re: Topamax isnt working...should I give up?
Post by swimchica623 on Feb 5^th, 2007, 4:15pm

Hi!
I'm a student too and I am also on Topamax. I was wary of the side effects so I decided to take it while I was on fall break and I warned some of the professors that I had had multiple times (I'm a senior at a small liberal arts college so I've been through a few of em!) about the drug and its side effects and to please let me know if they saw a change in my work, because I didn't want the drug to ruin my academics!
Topamax seems to have helped me, but I take it in combination with Verapamil because its the first line drug. I was misdiagnosed with migraines like a lot of people are and put on Topamax.....I saw soooome benefits from it so when we figured it was clusters my neuro decided to keep me on it but added Verapamil and the combination seems to be doing great now. I know it probably should have been the other way around...but I actually get migraines as well and the Topamax has stopped those in their tracks so I figured now I'm totally covered!
But hey if a drug isn't working for you, don't take it. Topamax is a fussy one, doesn't work for a lot of people just cuz of the side effects, some people just luck out and it does.
I'd suggest giving Verapamil a go.
If you want to PM me, go for it, I'd love to chat with a student clusterhead!!!!!!!!!!!!!!!
Lisa

Title: Re: Topamax isnt working...should I give up?
Post by UN solved on Feb 5^th, 2007, 8:49pm

It didn't help me at all. I was also in college while on it. Then I became dumb as a bag O hammers and got kidney stones twice on top of that ! :-/ Had to quit !

Goodluck with it !!

UNsolved