Migraine

Hey all, I've just started on Topamax and have been feeling a little more funky than usual since I started on it... stuff like feeling tingly in my hands, feet and in the back of my head... headaches... blurry vision on the right side... fatigue... trouble finding words or saying the wrong words ...for example instead of saying " don't worry my words just aren't comming out quite right" I ended up saying " don't not worry my shoes out comming not right" my partner and I and a friend of ours had a good laugh when we realised what I said...
I keep falling over too(not because I'm loosing consciousness or control of my body) because I'm dizzy and keep losing my balance... some of this stuff is normal migraine stuff but its happening all the time now... is this a "normal" passing thing that will go away when my body gets used to the meds?... baring in mind that I still haven't got to the full dose yet and I haven't yet weined off my previous meds (I've been told stopping them suddenly can have complications)

Kiwi,

I'd try and call your doctor, but you are experiencing some of the side effects I had on Topamax. I had the "Topa Tingles" in my feet and hands. I had trouble finding word and getting a coherent sentence out and my balance was a joke.

These symptoms came on after I got up to 75 mg of the med. My doctor slowing brought up my dosage to that over about 3 weeks I think. Some of the symptoms lessened as my body got use to the medication, some got worse the longer I was on the medication (the tingling)

How you been on the medication very long? Sometimes as our body adjusts, it does even out. Also sometimes taking less in the morning and more at night can help.

But bottom line is you need to have a discussion wth your doctor about it and how long you should give it to see if you adjust.

My friends and co-workders just said I was blonder than usual!!

Good luck

I agree with Cindy, it's definately a good idea to let your doctor know what's going on with the side effects.

The only one that really stuck with me were the cognitive issues. I just couldn't focus and stay on task at work. I gave it three months but eventually tapered off of it.

Let us know what you find out, okay?

Yea I've only been on them for about a week now I'm really quite sensative to new medications... the neurologist didn't really explain the side effects.. only told me that it may make me feel a bit run down and that I need to keep my fluids up because these new meds will put me at risk of kidney stones... currently I'm taking 25mg but the day after tomorrow I will be upping that a dose and then another dose per week witihn the next 2-3... which I think is ridiculous seeing that the neurologist wasn't sure that it would actually work when he said "hopefully this might work this time" ARGH! *insert rude word here*

I already feel like a complete cabbage I'm stuttering for the first time in my life... I'm normally a very coherant speaker . I'm too embarrassed to even open my mouth now... I feel so incompetent... for the first time in my life I feel shy... I'm all twitchy and stuttery I feel retarded... I'm not sure if it's the meds or my head and nobody can give me any answers....!!!

Sorry about the moan folks!

Topamax - They don't call it dopamax for nothing. If you google it you'll find that it can really do a number on you. It did not help my daughter's headaches but it did make her feel dopey and when she told her current headache specialist that he laughed and knew exactly what she meant. Yes some people have good luck with it and don't have the dopey side effects. Yes they say they may go away but often they don't. I just heard today that topamax is teaming up with another drug and will be released possibly next year as a way to curb obesity. Great. I want to lose weight but not at the expense of feeling dopey. Doctors tend not to tell you what the adverse side effects may be. Guess they think maybe you'll be one of the lucky ones.
It's always good to read about it since doctors tell you so little.

The SAME thing happened to me on Topamax. I was on it for exactly 2 weeks. One week on 25, 3 days on 50, and then a couple on 25 to taper off.

I got the tingles, and the same cognitive side effects you had. I swear it was like my IQ dropped 50 points. I couldn't find words, and I also felt really out of it all the time. I just didn't understand what anyone was talking about. I forgot things. It was ridiculous!!!

I think you should talk to your doc before you up your dosage. I know at 25 I had problems, and 50mg was intolerable for me.

FYI, I've seen 3 neurologists and I don't think any of them believed I reacted so badly so quickly, but I did. Don't be shocked if they brush you off. If you aren't comfortable with the side effects you do not have to take the med. That is one out of over 100 used for migraine prevention.

It's your decision if you want to try to "wait it out" to see if it goes away. But if you are having issues on 25, keep in mind the usual therapudic dosage is 100.

I know what you mean. I was only on Topamax for a week, but I was constantly fuzzy when I was on it. And everything tasted funny. Especially carbonated beverages. It was not fun. I agree with the girls, definitely get in touch with your doctor and see what they say.

Meli

Thanks folks... good to know I'm not completely losing the plot... I had a chat to my pharmacist yesterday... she seems to give me more info than my neuro! and she said to make an appt with GP asap... she said it could be something minor to do with the migraine itself but it's really important to get it checked out because it's not "normal" lol.. ( I do have an official diagnosis of being unusual apparently hehe)

Another worry is that apparently it can affect your period... as in make it stop start and do wacky things... my partner and I were a bit worried about that one... how would we know that we were pregnant every time (I have a drug reaction to the contraceptive pill)? does it affect a pregnancy test? also we read that it can give babies serious birth defects... and then when you have you have your baby you express the drug in your breast milk... ARGH! information overlaod!


Gosh! My mood is so out of wack right now ... really up tehn really low .. I really must be driving my poor darling up the wall... and I'm struggling to get sleep...apparently that's a side efect too... which is stupid.. that's not going to prevent migraine thtas going to friggn cause them.. insomnia is a trigger! stupid *inster rude word here* neurologist

Pharmacists can be really grand, sometimes, huh? Glad your's was helpful. Hopefully your GP will be equally helpful, and will help get this straightened out for you.

Yea she's fantastic! Pharmacists and nurses have got to be the kindest in the industry... they truly are saints!
the symptoms have gotten a heck of a lot worse now since I upped my dose to 50mg the other day.... I haven't been sleeping properly and my speech has worsened since my most recent migraine attack and hasn't improved... it's got to the point where I literally can't speak at all now... my stutter is unbearable!! I can say expletives though lol I got so frustrated last night I ended up swearing and said the "F" word lol
My mum suggested that instead of trying to speak I could sing what I wanted to say to the tune of "happy birthday" I haven't tried it yet but I think I'll end up getting the giggles and laughing too much if I did lol...

Will be making an appointment with my GP asap although this is really something my neurologist should be checking out but he refuses to have another appointment... he doesn't see it as priority

*sigh* I could always turn my life into a musical lol

Laughter's good for the soul. Might we worth a shot!

quote:

Originally posted by kiwiE-J:

My mum suggested that instead of trying to speak I could sing what I wanted to say to the tune of "happy birthday" I haven't tried it yet but I think I'll end up getting the giggles and laughing too much if I did lol...

sounds crazy but I actually tried it just to be an idiot and it actually worked! Apparently you use a seperate part of your brain to sing than speaking... I wonder if you use a different part again to swear because I can swear quite fluently lol... I guess that would come in handy with any neurologist appointments lol I could sing and swear at him... or if I encounter any annoying small children in supermarkets I could scare them off aswell...

And if you can SMILE while you sing and cuss at the neuro, then you'll REALLY, REALLY make him wonder what you're up to!

Went to the GP today to see what could be done about it... he doesn't want to take me off the meds without consulting a specialist first because he says he's just a GP and doesn't want to mess around with medications the neurologist has put me on and he doesn't think that's what's causing the whole speech thing... he is however trying to book me in for an urgent scan to see what is going on incase I've had a little stroke or something freaky like that.. and has given us contacts for the patient affairs advocacy at the hospital so hopefully I'll get another specialist who knows what they're doing through that ... he reckons the neuro has made a huge botch up...


He reckons there is still a future for me... to become a rock star perhaps the next Ozzy Osbourne? as I can still swear and sing.... no coherant speaking required... a rather high salary is offered I believe and lots of travel... my sort of life style... I think I might learn to like it! lol and I don't think I even have to show up to every gig if I get an attack... just say that I'm drunk or too wasted or whatever rock stars do in their spare time ...


Oh and plus I'm getting a medic alert bracelet... that is going to say "no I'm not drunk please don't hand me another vodka" lol... but I am getting a medic alert bracelet... but blimey they're expensive!! sheesh! ah well beats being dead I suppose?

Anyhoo that's my little ramble for the day...