Newbie !! :)

Hello All,

My name is louise i'm 27 and have just come out of hospital last week and have been told i'm in a chronic migraine state and that it will take months to go which was not great to hear to say the least also she told me i'm more than likely to suffer with chronic migraines for the rest of my life now GREAT !!!! I'm starting a direct access course into midwifery in september .

Anyway the neurologist has put me on topamax i was on 25mg but yesterday i had to up them to 50mg woooooow they really blow my head off i can't think straight i'm forgetting everything , but this pain in my head is horrible i could just cry all day long it feels like my head is going to burst , i'd really love to get to know like minded people like me as you cannot explain what it's like to people who don't experience this horrible condition .

Many thanks hope to speak to some of you soon louise xxx

Louise,

Welcome to Ronda's! You will find many caring, compassionate, and knowledgeable people who suffer from this horrific disease on this forum. Sorry that you had to come looking for us and that you too suffer from migraines.

I too am on Topamax. I have been off and on Topamax for many years now. Unlike you though, besides a few side effects that I have been able to handle, it has done wonders for my migraines/CDH.

You mentioned that you were on 25mg and now you titrated up to 50mgs. You said that you have already noticed memory loss. Wow, you must really be sensitive to med side effects. How long have you been on Topamax? I am asking only because it usually takes a little bit before you notice that. At least, in my experience with it, it did. But, we are all different, so I'm sorry that you are having this issue early on.

I hope you give it a chance to see if it works for you. They say you need to be on a med for at least 2-3 mths before you notice if it's working or not. Please, unless your side effects get worse, give it a chance. Lots of people have had wonderful improvements using this med. Not saying that it will happen, but saying that it could and you won't know if you don't give it a chance.

Keep us posted on how it's going. Would love to hear whether this drug works for you in the long run.

Hugs!

Louise, welcome.
So sorry to read of your situation.
As you are in the UK, perhaps you could look also at the Migraine Action and Migraine Trust websites (also on FB).

You will find empathy and friends on here.

Good luck with the Topomax.

Pennie

Welcome

I had a similar sensitivity to topamax and could never get past 75mg, though I think even 50 mg gave me way too many side effects. I'm no wimp...the side effects for me were just too intolerable.

I stopped the topamax when I could no longer recall words like "clock" and "photocopier". I also could not speak, and I pretty much speak for my living, so it was too much for me. Others have found it to be their wonderdrug.

Have a look around here. You will see there are many different folks here with all different levels of functioning. You are not the only student! You are not the only one working in the medical field.

You can deal with your migraines and continue school...many of us here have...it's just a heck of a lot more work then for those who don't suffer with migraines.

Again...welcome...you have found a fabulous resource.

Louise-

If you're having a lot of SE's from 59 mg, you might talk to your neuro about titrating up more slowly. My neuro was trying Topamax for me, and at 50 I was a panicky space cadet, when I tried 75, I had thoughts about suicide. Rather than taper up any further, I'd started to go back down, and my neuro had me off it altogether within 3 days of seeing her. If you start noticing any mood changes, please call your doc and let them know!

I know this is a miracle for some, but it was a nightmare for me. Just pay attention to yourself, and listen, and you should be fine. If this isn't the right preventative, there are others.