Confused

Specific Illnesses & Conditions VM/MAV
1

Hello everyone my name is Jackie

I am so glad I stumbled across this website and forum.

I have suffered with migraine from the age of thirteen, I am now fifty six, for the past ten years I have been able to control my migraines by knowing my triggers, which are mainly MSG, sweeteners and most additives and preservatives, so basically avoiding processed foods.

March this year I awoke to the bedroom spinning, I crawled to the bathroom, by this time I was sweating profusely and nauseous, I eventually made my way back to bed and slept for hours, only to wake up to a horrendous headache that was migraine level. Episodes of spins and wobbles have carried on ever since. My GP initially suspected Labyrinthitis , but realised as time went by that this was not the case and I was referred to an ENT consultant, who after various hearing and balance tests announced that I have MAV. I have just received results from an MRI scan and that was normal.

I am finding it hard to accept this diagnosis as my migraines usually start with disturbed vision of Zig Zags, which I still get if I stray from my normal routine of food.

I have not taken prescription drugs for at least fifteen years because the adverse affects far outweigh the migraine, and although I had previously controlled my migraines, I still got headaches and was hooked on codeine up until three years ago, I now take paracetamol and Ibruproven they do not really work except that they help to clear the fog.

I have a GP appointment on Monday to discuss the diagnosis, not sure where we are going to go with this one.

I am so confused and frustrated, as previously mentioned thought I had all this under control, only now the migraines have decided to move the goal posts and restrict my life again.

If anybody can help with advice it will be greatly appreciated.

2

Hi Jackie

It does sound like MAV and the symptoms can change over time so I reckon it’s definitely possible that your once controllable migraine headaches have morphed into ones which affect balance. Also you say your migraines usually start with zig zags which means you are getting visual migraines/migraine aura.

You mentioned about using paracetamol and ibuprofen to help clear the fog but migraine experts would probably advise against this. Apparently regular use of painkillers can perpetuate chronic migraine (Dr Silver). I think a MAV expert would probably tell you that you need a migraine preventative, eg beta blocker, tricyclic, topiramate etc.

A book such as ‘Heal Your Headache’ by D Buchholz sounds like it would be a really useful read for you, if you haven’t already x

3

— Begin quote from “Jem”

A book such as ‘Heal Your Headache’ by D Buchholz sounds like it would be a really useful read for you, if you haven’t already x

— End quote

Make sure you add “The Migraine Brain” by Carolyn Bernstein to the reading list too. Buchholz tends to be a little bit dogmatic IMO but still a good book nonetheless. You can listen to an interview with Bernstein here:

(NB from admin: this image links to a product this member has found helpful and at the same time helps fund the site: As an Amazon Associate I earn from qualifying purchases. More recommended products here. Thanks for your support!)

“The Migraine Brain”
More recommended books here
4

Thanks for the info Jen and Scott.

Having suffered from migraine for over forty years I have read many books on the subject I will give tthe books you have mentioned a try.

The thing that is confusing me is that I adapted my lifestyle and eating habits to control my migraines, which has worked for ten years, then out of the blue vertigo rears its ugly head when absolutely nothing in my lifestyle had changed to cause it.

I am aware that migraines can change because when I first had them at the age of thirteen they always started with the aura of zig zags along with facial numbness and pins and needles down my left arm as the years progressed the symptoms lessened apart from the aura and the raging headache.

As mentioned previously I control the migraines by avoiding my food triggers, so if the vertigo is migraine, what is causing it , if I am avoiding my triggers.

Thanks for reading

5

I have been advised that triggers can also be changes in blood sugar (moving to pre-diabetic or Type II diabetes that is not controlled), visual changes that need to be addressed by an optometrist, ear infections, fluid in the ears, sinus infections, altitude changes, extended travel by car or air, exposure to fluorescent lights when this is a change from normal environmental exposure, ad infinitum. I gather that we can develop new triggers over time. An article Scott posted recently about research on the neural pathways developed in the brain shows much promise in understanding how our brains are different, and hopefully, it will also help us understand why our triggers change over time. Hope this helps.

6

Vestibular Migraine Survival Guide 2013 (top of the website headings) sums it all up very well - the variety of triggers out there and treatment approaches that have been tried and what works. It even has an article to print and take to the doctor.

7

Migraine is a tricky beast - just when we have it figured out it can go and change on us. I might have missed it, but may I ask how old you are? Women go through a lot of hormonal shifts during life, and that can really alter the game for a lot of women.

8

Thanks for info domino

Dizzyforlife. I am 56 years old, and yes hormones fluctuating throughout a women’s life does play a big part in migraines, however I do not feel that this is the case with me asI have not had a period for 8 years.

I had my GP appointment today, he admitted that he has not had any experience of dealing with VAM, and wanted to refer me back to the ENT consultant for hi to prescribe medication, however I was armed with information from the vestibular survival guide 2013, from this article my doctor has prescribed one months supply of topimarate, thankyou Domino for pointing me to the quide and thankyou Scott for publishing it.

I will be returning to my GP in a months time for a review, heres hoping there will not be horrendous side affects. Is there anybody out there who has had success with this drug.

9

Jackie
I’ve had good success with Topamax and so have quite a few other forum members. Because this med can be a difficult
one to get on to we’ve found that it’s best to start off on a a low dose (say 12.5mg) and let your brain/body get used to
that dose for 3/4 weeks before titrating up again by a low dose. It took me 5 months to reach 100mg which is
generally thought to be a theuraputic dose.

I’ve tried several other meds and this one has definitely been the one that has helped the most. Because I read of many people on our forum who couldn’t cope with the side effects using the normal titration rate, i.e. 25mg a week over a few weeks which seems to disrupt our sensitive MAV brains! - I opted for the ‘low and slow’ approach and it has paid off for me.

Like you, I’ve been a migraineur all my life, well past menopause and had my migraine headaches well under control
when MAV hit ‘out of nowhere’!

Good luck with the Topamax - pm me if you have any questions.
Barb