I recently started on Topamax for MAV. Has anyone experienced an initial increase in MAV symptoms upon starting Topamax? It could be that I am just more aware of my symptoms since I have been reading more on MAV. Also, the doctor said to take my Topamax before bed but I have noticed difficulty sleeping since I have begun the Topamax. Is this normal? Does anyone experience indigestion with Topamax??
Rich
I started Topamax 2 1/2 weeks ago and to be honest, it has been awful. However, my neuro calls it the “work horse” of vestibular migraine and so I REALLY want to give it a fair chance. Prior to Topamax I was dizzy about 80% of the time. Topamax has taken that last 20% of non dizzy time from me. I am dizzy 100% of the time and it is a worse dizziness. I have decreased appetite. Yes, I have had some mild heartburn occasionally (which I never get). I have had some muscle pain and spasms over the past week. I get tingling and burning sensations…particularly in my right hand…why my right hand? I don’t know. That drives me nuts. I feel just generally weak. I am not actually weak. I work out at home with a trainer 3x/week…she is just keeping me moving for now but I know I’m not actually getting weak. I can plank longer and longer. I just feel icky and awful. My neuro told me that I probably wouldn’t start to feel better until 2-3 mos in. I am only on 25 at bedtime. It makes me tired at bedtime and have vivid dreams. He wants to go up when I see him back in 3 weeks but we will need to have a discussion about all this first. I will do what is best but I just don’t know if I can. This is so hard. And I am a stay at home mom to 3 kids ages 12, 8 and 1. Here is a post that I’ve bookmarked on my phone and I read over and over to keep me going on the rough days. This person is awesome for posting this: http://mvertigo.cloudapp.net/t/topamax-gave-me-my-life-back/7640&hilit=Topamax
Thanks for the reply. I am about a week into the Topamax. 25 mg daily at bedtime. This has been a long week as I have been CONSTANTLY dizzy instead of having the occasional break where I wasn’t. It was good to read that there may be a light at the end of the tunnel. I am scheduled to go up to 50mg in a week. That sounds like a pretty quick jump in dosage but I’m going to trust my ENT. I too, out of necessity, am attempting to work through all of this.
heid & jkysmom
Hope you are both able to get through the initial difficulties of trialling Topamax and get the benefits from this med. It is a difficult one to get your system used to and needs time and patience - as “zoology” has written. I really admire her determination to deal with the side effects, especially trying it three times!
One of the things that she says is that it took him six months to reach 100mg. This means she did a very slow titration to enable her brain to get used to the medication. I started off by cutting the tablet in half and took 12.5mg at night for three weeks before going up to 25mg. Took that for another 3 weeks before adding another 12.5mg etc. As I got to the higher doses I was able to titrate a bit faster.
My neurologist had suggested starting at 25mg and going up by 25mg every two weeks. However, I had tried several other meds without success and was desperate to give Topamax a really good trial. Based on other success stories & methods used - the ‘low and slow’ seemed to be the most successful so that is what I followed - like zoology!! My neurologist was happy to work with me when I told him what method I wanted to follow and why.
Hope this helps
Barb
Topamax can be a little rough to adjust to but well worth it. It took me three attempts to get from 50 mg to 75 mg but it’s been a terrific med for me. The only lingering side effect I have is occasional tingling in my hands and feet. No biggie.
Victoria
So Vic are you back to boozing and doing whatever you like with no problems now? S
— Begin quote from “scott”
So Vic are you back to boozing and doing whatever you like with no problems now? S
— End quote
I don’t really drink a lot or often, but yes, I can drink again - even red wine. As of a couple of weeks ago I’ve even started titrating down on the Topamax, from 75 mg back to 50 mg. Doing OK so far. So far so good. I plan on taking it slow and would actually be happy to keep some Topamax in my system (even 25 mg or even 12.5) in case I need to go back up again. I’m wary of having it konk out should I need it again (as happened with Prothiaden). On the other hand, as I’m on so many other meds it would be good to ditch non essentials. Will wait and see how things go - fingers crossed!
Going into my third week on Topamax. Dose was bumped up to 50 mg 3 days ago. So far, I feel like things are improving. I know three weeks is too soon to claim success but I will take anything I can get at this point!
RIch
Going into my third week on Topamax. Dose was bumped up to 50 mg 3 days ago. So far, I feel like things are improving. I know three weeks is too soon to claim success but I will take anything I can get at this point!
RIch
Victoria, how are things going with Topamax now, a month later? Very inspiring to see that it seemed to work so well for you. I really want to try this out. Gabapentin isn’t doing anything for me!
I’m late to the party but the increase of MAV symptoms when starting Topamax is completely normal. As far as I can tell, the dizziness that Topamax causes is pretty similar to the symptoms of MAV. I’ve never felt worse than when I started taking the Topamax, or when I was changing dosages, but the terrible feelings fade out in about 6 days from when you start/change dosages.
Heid200, how is the Topamax going for you now? Very curious.