1st post of MAV and I need advice/help?

Hi everyone I’m a 31 year old mother of 3 who’s new with this MAV thing. I’ve been suffering for a year and after tons and tons of tests they finally think it’s migraine associated vertigo. I have mostly bad days my work put me on leave as of May I can no longer drive or hardley function for that matter, I didn’t start off getting headaches but now do have the headaches at first it was just the extreem dizziness I get so much dizziness that it’s so hard to function, my head always feels full or pressure like as if someone is putting there hand on top of my head squeezing it as hard as they can 24/7 some days are better then others. It’s so hard to wake up not knowing if your going to have a good day or a bad day and that your day can change in a instant I have a very hard time walking into any type of store and seem to get worse if I do, I also have noticed if I drink coffee I get worse as well so that has stopped. I have started Topamax about 5 weeks ago and am up to 125mg I have had no side effects or problems with it but it hasen’t taken my problems away either I am also taking Magniesum 500mg a day as well I hope that by reading your posts and having your support that I will find some encourgement to get through this because it’s been so hard on my family and I for this last year and feel like I have gotten very little information about migraine associated vertigo from the doctors that I feel left in the dark.

Thanks

ahelper221,

You should wait about 3 months after you’ve reached the full dosage of your med before dumping it. It’s still way too early in your trial to decide whether you keep taking it or dump it and go on to a new one. Also, if you haven’t already, stay away from common food triggers and any other avoidable triggers such as irregular sleep, dehydration, etc.

Sounds like you’re handling topamax pretty good. I’d stick with it to see what happens. Topamax seems to be pretty helpful for MAV. I’ve heard of a few people getting their life back from that med.

Greg

Greg,

Thanks so much for the reply sounds good, I will stick it out for 3 months didn’t know to wait it out at least 3 months I just want to live my normal life again I can’t believe how bad this has been and how long this has lasted with no relief I’m keeping my fingers crossed that Topamax will help.

Do you know of any good web sites I can look at that talks about the food triggers that I could look at?

Thanks again

most of us would recommend the book heal your headache, which deals in detail with food triggers, and also the migraine brain as being helpful

there is a lot of discussion of food triggers on the forum here as well

welcome to the forum - but sorry you have to be here

hi vertigo is extremely hard to deal with especially when u have kids. The key is now you know the source of the vertigo and can start a treatment plan. Many here have overcome it (i havent as yet but it does get better as time goes on) Keep up with the meds hopefully it will work, if not u can always change. Vertigo is a challenge, so on better days try to keep moving so your vestibular system gets a work out. Ask if VRT will help you. Your doing everything right, it can be a long road and some days are a write off, so keep informed it eventually will get better

Check out the Migraine survival guide on the forum here.

Lorcalon is right about the book heal your headache. You must get that book. I think It’s very important to have if you want to beat this. Every MAVer should have it. There is a complete list of migraine triggers inside the book too.

Greg

— Begin quote from "ahepler221"

I have started Topamax about 5 weeks ago and am up to 125mg I have had no side effects or problems with it but it hasen’t taken my problems away either

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Hi,
wow! That’s great - upto 125mg in 5 weeks with no side effects!! I’ve been on Topamax for about 9 months and it’s been one hell of a struggle - I’m currently only up to 60mg per day!
You must absolutely give this at least 3, if not 4 months before deciding whether it’s working or not! I personally wouldn’t go any higher - just let the drug do its thing now for the next 3 months. I know it’s a long, long trial, but it may turn out to be worth it (check out Rich2008’s success story/posts re. Topamax - they’re what convinced me to remain on the drug for long enough).

I’m finally seeing some relief from the 24/7 dizziness, after almost 3 years, on the Topamax - but it took several months at 50mg+ before I saw any benefit.

I wish you all the best - let us know how it goes!
Tony.

HI Tony,

Thanks for the reply I will check out Rich’s story any good stories are helpfull it’s been a long, long struggle and sometimes it feels as if it’s never going to end.
I don’t know why but I was told by my doctor to increase my Topamax by 25mg every week as long as I was able to deal with the side effects which I haven’t had any thus far until I reach the goal of 200mg a day, so that’s why I’m up to 125mg a day.
I still have the fullness feeling in my head everyday 24/7 and mild headache the dizziness isn’t as bad as it was before, just gets bad if I go into stores, drive or do things with a lot of motion. I will wait it out another 3 to 4 months and hope it gets better.

Thanks fingers crossed :smiley:

— Begin quote from "ahepler221"

I don’t know why but I was told by my doctor to increase my Topamax by 25mg every week as long as I was able to deal with the side effects which I haven’t had any thus far until I reach the goal of 200mg a day, so that’s why I’m up to 125mg a day.

— End quote

Hi - I know I shouldn’t be contradicting health professionals, so please check with your doctor - but I’m sure I’ve read somewhere about there being a ‘sweet spot’ for Topamax, and a risk of ‘running past it’ if you keep titrating upwards too quickly without giving it enough time to see an effect - also a ‘diminishing returns’ theory where you get less bang for your buck past a certain dosage. Hopefully others can chip in with some info. So, please check with your doctor, but I’m certain that I’ve read about these issues from peoples’ experiences…
Take care,
Tony.