Should I quit Topamax?

Hi Guys

Ive been on 50mg of Topamax for a month now, and the med for 2 months in total.

I must admit i havent noticed much of a difference and i have had better periods unmedicated. Im not on deaths door like july and august, but nowhere near feeling recovered. Should i stop now and start Efexor or give it another months chance?

What would you do?

Thanks

luke

Hey Luke,
I stopped after about the same amount of time and dose. I had many worse days on it than I did med free. Some say that the full effect doesn’t occur until 3-4 months but I wasn’t willing to continue due to some of the side effects - nothing major but still bothersome.
It is a tough call for sure. I think hain would say stop, not sure about the others.
Good luck.
Ben

so hard to say. I would tend to say that if the side effects aren’t bothering you too much to stay on it 4 months, so you never have to wonder if it would have worked.

Luke,

Just sent you an email. I know if it were me I’d probably toss the stuff but I think Lisa makes a really good point. If you can handle this stuff for another couple of months maybe it’s worth doing to know for certain. I can’t recall if Rich had any good periods as he titrated up on it but he didn’t come out of the woods until 4 months had passed.

My brother’s wife is on 150 mg Topa daily in Canada. It has killed her migraines.

Scott

Hey Luke,
It seems the rule of thumb with these trials is that if you are tolerating the med… keep going! You still have lots of room to increase the dose and some of the migraine studies show people do well at 100 mg and beyond. You are ahead of the game just by not being slammed by the side effects. I too agree with what Lisa wrote that you might as well go the full way if you can so you don’t have to question in the future whether this med would have been the one.

Good luck,
Lisa

Ben,

I am curious why you say Dr. Hain would tell Luke to stop at this point?

Thanks,
Lisa

Hi Guys

Thanks for chiming in.

Based on all your responses I think i will keep going ~ atleast for another month.

My only reservation was that Hain said ti dump it after a month at 50mg if i saw no effect. Not sure if I should up the dose without his advice though. He will just tell mme to quit if i do and try efexor.

thanks again

Luke

Ok balls to Hain (no disrespect intended) but i am going to up the dose to 75mg tonight and sit on it for another 4-6 weeks. After that time I think I will stop - its a fair trial.

Yay more side effects tommorrow!

Cheers

Luke

Hain, pfffft, what the hell does he know? :lol: Good luck!

Hain has this thing for Effexor for some reason. Not sure why he feels so strongly, but from the people I have seen on the forum and other patients of his I have spoken with he definitely has some sort of love affair with the stuff… i’m just saying :lol: Other docs don’t feel so strongly or even use this med for MAV so I support you fully in your decision Luke. Most do however use Topamax.

Good luck! I really hope you get some relief…lisa

Luke, I am on Topamax and was told by my neurologist who specializes in migraines you have to get to at least 100 mg and then be on it for a number of months continuously to see if it will help you.(In other words, under 100 mg is not likely to help you.) My situation is a little different than yours, but at the least, I would consider getting up to the dose of 100 mg and staying there for while before quitting. If you are already tolerating the med, it is worth the trial.

Best, Bonnie

Luke,
When I had asked Dr. Hain about this he had suggested that I could continue taking it and that I could introduce Effexor simultaneously. I believe this was his suggestion for me because I was severly depressed. Maybe you want to ask him about that? I am currently on 50 mg of topamax and 50 mg of amitriptyline. I will be upping the ami next week, but only by 10 mg I think.
Let us know what you decide!
Sarah

Hi Sarah

Thanks for the advice.

I though Effexor and Topamax couldnt be added together as they were from the same group ( atleast I thought thats what Hain told me).

Anyhow, I’ll email him and see what he says ( if he replies!).

Im on 75mg of Topamax now and its really knocking me around.

Luke

Hey Luke,

Sorry to hear the increased dose is “knocking you around”… What did you mean by this specifically?

Also, topamax is an anti-convulsant and effexor is a SNRI so they are not from the same class and should be okay to be used synergistically. Treating MAV is just such a damn pain and it is so hard to tell when to add another med, when to stop a med, etc. I hope Hain can guide you a bit more.

Keep us posted.

Best,
Lisa

This is Hain’s MAV-treatment flowchart:
dizziness-and-balance.com/di … tients.pdf

Near the bottom, under “Combinations,” it says:
“Venlafaxine+propranolol
Topamax+Verapamil
(avoid venlafaxine+topamax, two drugs same group)”

I suppose when Hain means the same group he is not referring to class. Effexor and Topamax both work directly on the CNS so starting with the other combos he mentioned makes the most sense.
Thanks for sharing Hain’s flowchart. It is interesting that according to his chart he prefers to start patients on Topamax first, then a bp drug, and lastly effexor, yet in practice he seems to choose Topamax and Effexor as first line agents.

In any event, each doc has their own opinions on med management and we just gotta trust in our docs. I don’t think there is any magic and it is a guessing game of trial and error to determine what works for us. The docs who understand MAV all use basically the same drugs in different orders…

Lisa

George,

Thanks for linking to that flow chart. I’ve never seen it before … I’ll post it on the baord in the sticky section somewhere.

Cheers … Scott

ps. gotta like that last option: “see doctor”. Is that so he can tellyou you’re up the creek? :lol:

Hi Guys

So things have changed around rapidly in the past few days. First of all Im not in Miami anymore, back in Colombia and heading to Panama tommorrow! I emailed Hain to ask his advice and he told me to dump Topamax straight away as I should have seen some positive sign of improvement. He said any more time was most likely futile at this point. I had also bumped up the dose to 75mg and my head was so heavy, I was exhausted, my visual vertigo was horrific and I felt like death and wanted to jump in front of a bus. And guess what I have lowered it to 25mg today and I woke up feeling the best I have felt in ages ( ok Im feeling a bit weird after the travelling today now), more energy…clear mind and felt sharper with less dizziness. Its bizzarre how this stuff can affect you!

Hain wants me on Efexor ASAP, but Im holding off for a few weeks to let Topa pass out of my body and have a drug rest! Also I have mates coming to meet in Panama and I want my syptoms to be kept at baseline shit, instead of super shit. Last time I tried Efexor I woke up like I have taken Ecstacy…it was horrific and Im not looking forward to the repeat.

So 2 out of Hains top 3 done and nothing. Verapamil and Topamax no more!

Luke

Luke, is it possible that sitting at 25 mg might do the trick? Rich was on 75 I think then dropped down to 50 and all of a sudden blue sky appeared.

Scott

— Begin quote from "scott"

Luke,

Just sent you an email. I know if it were me I’d probably toss the stuff but I think Lisa makes a really good point. If you can handle this stuff for another couple of months maybe it’s worth doing to know for certain. I can’t recall if Rich had any good periods as he titrated up on it but he didn’t come out of the woods until 4 months had passed.

My brother’s wife is on 150 mg Topa daily in Canada. It has killed her migraines.

Scott

— End quote

I had NO good periods on Topamax titrating up. It was a total nightmare but ABSOLUTELY worth the end result. I’d never stop taking this medication. Someone will have to pry it from my cold dead hands lol. My advice is to stick it out for the full 4 months if the side-effects are merely “bothersome”. That’s nothing. I literally couldn’t breathe on the stuff and I kept taking it. Now I’m fine. No side-effects, only results. I’m now one full year practically symptom-free on topamax. If after 4 months you are still having issues, THEN I would say it didn’t do its job but until that time, in my opinion, you are just calling it quits early. Just my opinion. Good luck with whatever you decide

Rich