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Cluster Headache Help and Support >> Medications,  Treatments,  Therapies >> How long should I give Topimax to work?
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Message started by 1968eric on Jul 25th, 2009 at 9:04pm

Title: How long should I give Topimax to work?
Post by 1968eric on Jul 25th, 2009 at 9:04pm
How long should I be at max dosage of Topimax before I decide it doesn't work?

Title: Re: How long should I give Topimax to work?
Post by 1968eric on Jul 27th, 2009 at 5:34pm
Shamless self-bump. Sorry.

I've been at max dose for a while now. I really should keep a journal so I know exactly how long on stuff like this.

If it works, does it start working immediately or does it take a few weeks to get into the system? I don't want to be on this stuff unnecessarily unless maybe a combination of this and something else may work for me.

Title: Re: How long should I give Topimax to work?
Post by Val_ on Jul 27th, 2009 at 5:46pm
Hi Eric,

I would recommend you talk to your doc about that one!!  I can tell you that it took about a month for the full effect (and side effects  :P) to kick in for me...
That's a tough question and different for Every person -  drugs can take anywhere from a day to weeks depending on what you're taking, what else you're on, and your body chemistry to see if it's working, then sometimes you don't realize until you stop if it really was working!!

How much Topamax are you on??  Did you taper up?  25 mg to 50 etc.?  Are you on name brand Topamax or generic topiramate?  These are my q's - just wondering.  And how long you've given it?

But definitely ask your doc!!!  Keep him/ her involved in these important questions!  Don't just 'decide' something doesn't work on your own.  Make that opinion and discuss with the one person who can advise - hopefully your HA specialist??   ;)

Val

Title: Re: How long should I give Topimax to work?
Post by 1968eric on Jul 28th, 2009 at 3:23am
I've been at full dose for a week - 100mg. I tapered up 25mg at a time, although I confess I accellerated the last week by about six days but I'm here to talk about it.

I did ask how long I would need to be on it before knowing it works but didn't get a direct answer from the MD.

I always appreciate the "ask your doc" admonitions, and understand everything said here is what it is, but the fact of the matter is I trust the aggregate of knowledge about CH on this board is superior to that of any doc I've seen about CH including two neuros.

It'll take another doctor appointment to change anything, but I want a rough idea when I should give up hope and ask the doctor if he doesn't think I should try something else.


Val_ wrote on Jul 27th, 2009 at 5:46pm:
Hi Eric,

I would recommend you talk to your doc about that one!!  I can tell you that it took about a month for the full effect (and side effects  :P) to kick in for me...
That's a tough question and different for Every person -  drugs can take anywhere from a day to weeks depending on what you're taking, what else you're on, and your body chemistry to see if it's working, then sometimes you don't realize until you stop if it really was working!!

How much Topamax are you on??  Did you taper up?  25 mg to 50 etc.?  Are you on name brand Topamax or generic topiramate?  These are my q's - just wondering.  And how long you've given it?

But definitely ask your doc!!!  Keep him/ her involved in these important questions!  Don't just 'decide' something doesn't work on your own.  Make that opinion and discuss with the one person who can advise - hopefully your HA specialist??   ;)

Val


Title: Re: How long should I give Topimax to work?
Post by Val_ on Jul 28th, 2009 at 9:55am
I asked about the dosage because 100 mg isn't a "full dose" - it is a dosage, yes.  some go to 200.  some get plenty of relief at 100.  Some people see differences between the generic and the name (I myself do not fall into that category.) I would def give it at least another week at this dosage before 'giving up' or even requesting an appt with my doc for a possible change of dosage - I know this is a drug for me that took a bit longer to see daily results.  
Might be worth a discussion of possibly going a bit higher if the side effects don't bother ya - this is always worth doing on any drug trial!! a week or three of extra time ruling out if it worked for you at higher dosages is a thing that will be of use to you in the future.  Will save another doc from asking ya 'did you try topamax at 200 mg - it might really help you' and you have to say you only went to 100...?

Goood luck - O know it sucks when you're in cycly - I've been doin it for 6 mos now, drug trial after another.  Been on topamax for a few years though - for migraines - yet another pleasure I get to deal with  ;D

So stick with it for a few, and don't give up just yet.  Talk to your doc some more on what their plan might be as far as highest dosage, IS 100 as high as they want you to go??  Why?  What's next?  Ask lots of Q's!!   ;)

Val

Title: Re: How long should I give Topimax to work?
Post by 1968eric on Jul 28th, 2009 at 4:52pm
I'm retired military and still see doctors at military factilities and they seem to really like taking tentative steps. I get the feeling 100mg is as high as they'll want to go.

I'm in "shoot to kill mode." If I'm going to try something, ramp me up to the no-BS max dose I can tolerate and see if it works. If not, dump it. If it does, then step it down to see if smaller doses work.

Title: Re: How long should I give Topimax to work?
Post by Karla on Jul 28th, 2009 at 7:58pm
My neuro slowly moved me to 100mg and with no results moved me to 200mg.  No results.  After trying everything my neuro could think of I was sent to the ha clinic here in Madison/WI.  My ha specialist suggested that the topamax dose of 200mg was to low and suggested we try upping it to 600mg.  So we did.  I still had no luck with it.  I know people with epilepsy can go even higher on this medicine.  So don't be afraid to ask for a higher dose and have your dr. look into his reference book to veryify that this dose is ok or consult with a pharmacist to confirm.

Title: Re: How long should I give Topimax to work?
Post by Joeytastic on Jul 31st, 2009 at 11:37am
I have just been started on theis drug, This how they are tapering me up.

WEEK 1: 1 X 25MG
WEEK 2: 2 X 25MG
WEEK 3  4 X 25MG

I am on week 1. My Neuro says I should see it start to work it's magic after around week 2 . I am on about day 5 at the moment and I can feel it's side effects... I feel a bit stupid... I forget words mid sentence and forget where I put things (post it notes are my new best friends!!) and I don't feel like eating much any more.....

But the CH are still gettings me about three times a a day about KIP 7

Add me as a buddy if you like, we can be Topimax pals xx

Title: Re: How long should I give Topimax to work?
Post by Brew on Jul 31st, 2009 at 12:06pm

Joeytastic wrote on Jul 31st, 2009 at 11:37am:
I can feel it's side effects... I feel a bit stupid... I forget words mid sentence and forget where I put things (post it notes are my new best friends!!)

They don't call it Dopeymax for nothing! ;D

Title: Re: How long should I give Topimax to work?
Post by GatorScott on Jul 31st, 2009 at 12:48pm
Eric-

My neuro put me on an accelerated taper to see how quickly I could get to what he considered max dose, which was 250mg.  I was not in cycle, so he just wanted to see what side effects I observed and how I handled them.  I tapered up in about 36 hours from 25 to 250mg.  Saw the beginnings of side effects at about the 24-hour mark and then really felt them after 48 hrs.  Only side effects were the dopey things (I had to re-read emails 3 times to comprehend them, etc.).   We ceased the experiment after about 4 days, so I won't know their efficacy on my CH until I get back in cycle and start a new taper.

Hope it kicks in for you soon!

-Scott.

Title: Re: How long should I give Topimax to work?
Post by 1968eric on Aug 1st, 2009 at 6:24am
Speaking of side effects they were pretty significant when I first began at 25mg the first few days but have been pretty much unnoticiable since.

Title: Re: How long should I give Topimax to work?
Post by Nicolas23 on Jun 19th, 2017 at 3:22pm
At 25mg, it started working within a day for me. I've been told that it can take 3 to 8 weeks to start getting to its full effect for most people though.

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