I had been told to add in Topiramate to try and improve even more - the Lyrica is doing a good job, but I’m not there yet. Anyway, I was on 25mg for 2 weeks and it made me feel awful, this included chest pains which did wonders for my anxiety! I stopped them on GP advice, but when my own GP rang me she asked me to try again - I did and thats it! I’m not trying them again.
Anyway she’s now given me Zonegran (Zonisamide) as that was Dr Silvers second choice add-in. Has anyone any experience of this? I’ve read the side affects (bad idea I know) and now don’t even want to try it!
Also has anyone in the UK been offered the flu jab due to MAV? Only I’ve had two bad chesty/sinusy colds in the last three weeks and it knocks you off your feet and I was wondering if to ask?
Help!!!
Hi Tracey,
Am just about to PM you re Dr Silver 
You’re saying goodbye topiramate, just as I’m saying hello topiramate! I went to see my GP today, as my headache migraines have got really bad again, and he’s given me topiramate to try.
Sorry to hear about your chest pains, but that is really a side effect you can’t ignore/try to get through, so it sounds like a change of medication is definitely needed. I’m generally quite tolerant to medication, so I am hoping I won’t have any major problems like that. I’ve not heard of the new drug you are adding in. But it’s worth persevering with trying different combos, as eventually you will stumble on the one that works for you.
re the flu jab, I’m not sure it would be that helpful to you, as it will only stop you getting flu, and it won’t stop you getting colds, which are much more likely/more frequent. Even though my vertigo and dizziness has pretty much settled down to nothing now, I still feel rather off balance whenever I get any kind of cold. I wish there was a vaccine for colds!!
I absolutely hated Topamax! Different drugs work differently for everyone but Topamax was the devil. I was taking a quarter of a pill (I can’t remember the dosage) and couldn’t get out of bed in the morning. I couldn’t think straight, I couldn’t keep my eyes open, It was awful! My Dr. told me to give it more time but I just couldn’t do it. I gave it 2 weeks then threw it away. Dr’s really seem to be fond of it though.
Don’t fear the big T! LOL. I’ve been on it for a few years now and it has been very beneficial. My quick advise to anyone starting it:
- begin slowly at a low dosage (I believe I began at 15 mg)
- taper up slowly (yes, i mean SLOWLY)
- you likely will feel like sh*t for the first 2 weeks on it (kinda like you have the flu) as your body adjusts, as well as some side effects
- don’t assume you will get the side effects you have heard about, but if you do, don’t worry about them (some are more common than others, and many go away or lessen over time)
- give your body/mind time to adjust to the med (this not only is to see if it will work for you, but also in terms of the side effects). This means you have to stick it out and deal with the side effects for a while to see if it will work for you and help you with migraine/MAV. Don’t give up early!
- If cognitive issues are a problem, you can drop the dosage and still find it beneficial. I had to do this and am at level where it still works for me.
- Yes, you will likely have some side effects on this med. As I mentioned, some will go away over time, some will lessen, some will stay. You have to decide what you can handle and accept. I accepted the side effects because the med’s benefits outweighed the side effects (but that doesn’t mean I like those side effects, lol.)
The pattern I see on this board with people who drop Topamax is that they don’t stay on it long enough or start on too high of a dose to really give it a real try. I understand if side effects are truly an issue and one can’t stand it, but you have to push through some of that to see if it works.
Good luck and best wishes! ~Bonnie
Hi…I trialled topamax but started out with too high a dose which caused confusion and anger issues. On the advice of others on this board I dropped to 12.5 mg nightly. Unfortunately after a few weeks my hair starting falling out in large handfuls. Had to have it cut short. Since I was already on a low dose I stopped the topa immediately. To me this was a totally unacceptable side effect since no one including my neuro and dermatologist could tell me if I would eventually experience regrowth. I am now on metotoprol 50 am 50 pm, Bcomplex including B2, magnesium, COQ10 and xanax when the dizziness and lightheadness is unbearable. I am functioning at about 75% but it’s better than four months ago when I could not even get out of bed. I understand from this board that those who can tolerate the topa do really well. We all react differently and I wish to hell there was one med that we could all take and be done with this damn MAV forever!!! Take care everyone,
Karen
— Begin quote from “keliza52”
Hi…I trialled topamax but started out with too high a dose which caused confusion and anger issues. On the advice of others on this board I dropped to 12.5 mg nightly. Unfortunately after a few weeks my hair starting falling out in large handfuls. Had to have it cut short. Since I was already on a low dose I stopped the topa immediately. To me this was a totally unacceptable side effect since no one including my neuro and dermatologist could tell me if I would eventually experience regrowth. I am now on metotoprol 50 am 50 pm, Bcomplex including B2, magnesium, COQ10 and xanax when the dizziness and lightheadness is unbearable. I am functioning at about 75% but it’s better than four months ago when I could not even get out of bed. I understand from this board that those who can tolerate the topa do really well. We all react differently and I wish to hell there was one med that we could all take and be done with this damn MAV forever!!! Take care everyone,
Karen
— End quote
Oh my, did the hair grow back?
Unfortunately, not yet. Fortunately, my hairdresser was able to cut layers and it doesn’t look too bad. Sad though, I had high hopes for the topa.
Karen