Migraine

For those of you that get auras, what do you know about them. I started getting my migraines when I was young, and 10 years ago started Nortripyline. Really worked for me. I reduced my migraines to about one a month and the aura migrianes to about one every 10-12 months. Now I'm 44 and my aura migraines started up again full blast. I usually can handle the pain, but do I need to be worried about the auras? I saw a neuro three weeks ago and he wants me to start on Topamax, but some of the side effects scare me. Any help would be appreciated.
One more thing, I had an MRI when I first started with the auras and all was fine. Had a cat scan three weeks ago and all was fine as well. Should I have insisted on another MRI, the Neuro said it wasn't necessary since I have classic migraine symptoms.
Eva

Hi Eva,

Welcome to MyMigraineConnection. Aura can be a scary phase of Migraine disease. There's been a recent study Migraine with Aura Linked To Cardiovascular Disease in Women that every woman with aura may want to discuss with their doctor.

Many people have great success with topamax, while others don't have much luck with reducing their Migraine frequency while on it. Something important to remember, that you will hear me say a lot, is that side effects are potential. This mean, the side effects listed won't happen to everyone all the time. Being informed about potential sides effects is one thing, but we need to keep in mind that our bodies react differently to drugs so no two people will react the same way. Does that make any sense?

There are plenty of medications used to prevent Migraine disease, like over 100. Headache and Migraine Preventives Feel free to print this out and discuss it with your doctor.

What about a headache speciaist? A neurologist may be a good doctor, but isn't an expert when it comes to headache and Migraine disease. Headache Specialists
Please let us know how we can help you further.

Hi, Eva!

Welcome to the forum!!

I have migraine with aura. I know from talking with the others on this board that no two people experience aura in the same way! For me, my aura sometimes involves the sparkly, spinny things in the periphery that, as the migraine progresses, take over my field of vision. Sometimes I get a different type of aura: one where my line of sight looks like a puzzle with some pieces missing (i.e., blank, black areas here and there). Some others here get aura that involves strange smells!

My headache specialist repeats my MRI every few years. In my case, however, I have markedly different pupil sizes in my eyes during migraine. I also have LOTS of numbness, tingling, and I sometimes faint. I guess she's just being cautious! I'm really not sure how often MRI should be repeated--your doc would be the best one to answer that!

If you look at the other posts on the forum, you'll see that LOTS of people here have Topamax experience! Some do well with it, and some not so well! I am one who tried it and discontinued because of uncomfortable side effects. But you'll never know if it'll work unless you try it yourself!!!

Keep us posted!!
I look forward to talking with you again!
jenny

Thanks for your replies. I have been checked for cardio vascular disease because I have a strong family history of it. I will definitely take your advice and find a headache specialist.
This is just so frustrating, because I had it under control for ten years. I want to hold off on starting Topamax until I see a specialist.

Eva

Hi, Eva! Add a big droolie hug to the welcome pile!

I've got aura, and it's one interesting duck. I get some visual stuff, mostly, along with numbness across the left side of my face, but I've also been known to have olfactory and auditory aura. Just all kinds of quirky neuro fluff stuff, usually accompanying cognitive glitches.

I've also got extented aura patterns, which means my aura doesn't usually resolve with the onset of the headache. It can go through and past the migraine, into the postdrome. That's kind of rare and quirky in itself, so naturally it would happen to me.

I'm glad you're going to look for a specialist since you've had such a big shift in control. That sounds like a great plan.

As for the Topamax, I wouldn't worry too much ahead of time about potential side effects. Most people don't have them, or have mild ones. The only real way to know how it will affect you is to try it under the close supervision of your doctor. You may find that it's the best thing since Wonder Bread. It could be a good move to wait until you have a specialist who has worked with Topamax closely, if it makes you feel more at ease.

You guys rock! It feels like you really understand what is going on. I've had some medical issues in the past couple years, and sometimes it can be overwhelming. I'm calling the HA specialist today and will try to get an appointment ASAP. I'll hold off on starting the Topamax until I see him/her.

Thanks so much
Eva

Oy, auras – I usually get nothing but auras; numb left side of face, sometimes numb arm, dizziness, a light show everyone once in a while.
It’s totally up to you & your doc what you do, but here are
my two kopecks about side effects: (I am the princess of side effects.)
Ask how long they might last based on the specialist’s experience with other patients. For instance, with Topamax, I’ve heard it takes a few weeks, but for me it was shorter. I started Topamax about a 5-6 weeks ago. I tapered up to 100mg at first and I felt like Sleepy the Dwarf with painful, tingly feet for the first week or so, then I got used to it and felt fine. Then I tapered up to 200mg and I felt like Dopey the seriously spaced-out Dwarf with stumbly feet and no vocabulary for about a week and finally today I’m starting feel more like myself. And best of all, through all of this… no migraines!
Also ask your dr. if there are measures you can take to counter the side effects. I had emotional side effects with Keppra. But I could take B6 supplements and it really helped. In my current case, exercise may have helped me counter the effects of Topamax. (Actually I didn’t ask the Dr. about that, I just did it.)

Good luck!
Steph

No biggie. We're just doing what we do best ~ being here for each other. It's what we do.

quote:

Originally posted by Eva62:
You guys rock! It feels like you really understand what is going on. I've had some medical issues in the past couple years, and sometimes it can be overwhelming. I'm calling the HA specialist today and will try to get an appointment ASAP. I'll hold off on starting the Topamax until I see him/her.

Thanks so much
Eva