Topamax-higher dose and dizzy

Hello everyone,

I started Topamax back in October, 3 weeks at 25mg. Got off for various reasons. I was fine on it.
Started again 9 days ago at 25 mg. Dizzy first night, then fine. I upped dose the other night, to 37.5 and
boy was I dizzy for the first few hours of the night. Then during the day I was a bit off, felt a moving
sensation while sitting.

So I went back down to 25mg last night and was fine last night. But this morning, on the computer, I
can tell im a little off. Will it just take a few days to get that extra out of my system? Because I was
doing much better before I jumped to 37.5!

The Neurologist also thinking of having me quit entirely, because he doesn’t think this is a migraine.
He believes it to be tension related, anxiety and stress. Which well, I thought all along. ( I hope we are not wrong)
I had a MRI/MRA done and not ONE lesion. I know that doesn’t mean 100% this is not MAV, but it sure does
point the other direction a little bit more now.

I still want to stay on 25 mg of Topamax since I did feel a little better on it, and maybe add in Cymbalta
or try Celexa again. Although the ear noise, headache and rash from celexa scares me… hmmmm

thoughts, suggestions?

Happy New Year to all!

You may not be giving yourself enough time on the dose increase to get over the increase in dizziness. I had increased dizziness each time I increased my Topamax dose.

Perhaps you need to give the Topamax more time after each dose increase? It is a powerful med and you have to give these meds time to settle in your body before tossing them aside. Can you give the 37.5 mg another shot and see if you can wait it out a full week? Then see if you can bump up to 50 mg.

Or does your neurologist want you to go to an SSRI?

maybe the dose is just too high 4 you. can you cope doing the 25mg? I was on 30mg of nortriptaline & was having wierd side effects…i lowered it to 10mg. I know my body better than my dr. & im feeling alot better. I was considering topamax, but I will have to think about that.

good luck to u.

Hi Kristina,

I will be starting Topiramate (Topamax) either at 12.5 or 25 mg. on Monday night. I am not sure what to do yet. I am going to see how I do on that for awhile and then may add in Celexa later.

I just withdrew from my Venlafaxine (Effexor) as I was having horrible side effects from it. I was extremely nauseated all day and was throwing up also on some days. I did lose a few pounds which was great, but not worth the horrible feeling I had all day.

I hope whatever you decide to do will make you feel better. Feel free to send me a private message since we are going to be on similar meds and then we can be there for each other :slight_smile:

Take care,

Hi Kristina -

I’m not understanding the lesion thing - why do you correlate lesions and MAV? My understanding is that my clean MRI is what helped make my diagnosis of MAV, by ruling out other stuff.

As for Topamax and dizziness, when I first started on Topamax, I was experiencing daily wobbliness and head motion intolerance in addition to occasional dizzy spells that were severe enough that I couldn’t walk. After my first dose of 25 mg, the spells that caused me to be unable to walk stopped right away, but the daily wobbliness and head motion intolerance continued until after I’d been at 100 mg for about 3 months.

I had tunnel vision auras with the severe dizzy spells, and those have stopped too, so I’m able to drive now - I had wondered if I might have to give that up.

Just some thoughts to add to your decision process. Good luck!

Hi Mary Alice,

Well a MRI shows migraine lesions. I have none, which means, the headaches I have had, indeed where from my neck, thus having surgery.
If I had a bunch of lesions, I would be more skeptical thinking hmm maybe migraines. But I knew in my heart they werent. They did not fit the bill.

I came down to my original starting oint of 25mg and it took 5 full nights, and Im back at baseline. The 37.5 increased rocking, dizziness.

I actually found out that the Sternocleidomastoid muscle causes ALL of the symptoms of MAV. EVEN the balance issue.
My right leg is shorter than my left, due to hip surgery, and that throws off your posture. Just one of the reasons this muscle can go into a
spasm. Well this muscle is a neck muscle that attaches to your skull/inner ear, and causes all sorts of things. Including headache, and migraine,
vision problems, balance, dizziness, etc… they call it the strangest muscle in the body.

When the muscle is inflammed it pulls on your inner ear, and causes flucuation in the ear that causes dizziness, and balance trouble. It also can upset the dynamics enough to cause BPPV.

I have had 2 neck surgeries and 2 hip surgeries. The muscle comes around to the front of neck. So whiplash, neck trama/injury also play a key roll in all of this.

So Im pretty sure that is what im dealing with. I can ride in a car, my balance is great. I have pain in my head in my muscle. I have been saying that for months, and people look at me like im crazy. Its your neck, mo its your ear… well. its a neck muscle that pulls on your inner ear… ding ding a winner!

i hope everyone else on here has ruled that out.
Who would have thought. A muscle can cause such weird things.


Hi Kristina -

I was still wondering about the issue of lesions found on MRI, so I did a little research. From what I read on Dr. Hain’s website (and a couple other sources), most migraineurs don’t have brain lesions, and even if they do, the lesions aren’t necessarily assumed to be migraine related unless there are a moderate to high number of them (when fewer in number they may be incidental findings).

But with the neck surgeries you’ve had, it seems very possible that you could be having tension headaches - scar tissue maybe?

Wishing you much luck in the new year!

Hi Mary Alice,

That’s the trouble so much different information. I believe you when you talk of your research. But I found the opposite info.
Oh well, no worries. Im seeing a specialist for my tight neck muscles. One thing is certain. The sternocleidomastoid does attach
to the skull and inner ear. So anyone with MAV symptoms may actually be suffering from this muscle. I would do a post about it
but its so darn hard to believe that a muscle can do all of this. I didn’t believe it at first, but it makes sense knowing its attached
to the inner ear.

I wish you all the best. Hoping my tx works for me. They saw it can take several. Happy New Year! May 2012 be full of answers and treatments for all.