Mav diagnosis

Hi, Im new to this board but hoping someone can help me out here…
So I have recently been diagnosed as having MAV. Long story short I had a referal made by my gp to see a Dr in the hospital, I believe he was a neurologist. However at the time I thought I was going in to see someone specifically about my tinnitus…this threw me somewhat because I wasn’t prepared for the questions he asked me and I basically told him barely anything other than the vertigo I suffer with and the ringing and flapping in my ear.
Nothing else seemed relevant and sadly half of it didn’t cross my mind as I tend to get quite muddled and forget ALOT. So now I am waiting on an MRI scan and another appointment with him in 6 months but I’ve got so many questions and I failed to mention so much to him that I’m extremely frustrated with myself! I was hoping someone here may be able to shed some light for me :slight_smile:
So I get periods of dizziness that can last between 24 hours up to a week, this can knock me off my feet entirely but even when I’m not dizzy I feel utterly exhausted, not in a tired way but just run down and week. But I don’t suffer dizziness all the time, in fact I can go months without being dizzy. Is this a part of MAV? Even when I’m not dizzy?
Also they did a hearing test, which came back as good but I didn’t feel it was a fair representation of my hearing, no back ground noise and I was even holding my breath at points so that I could hear the sounds. I’m almost certain that in real life situations I don’t have full hearing in my right ear! I’ve got so many small niggling issues that could all be related but it’s mostly the tiredness, it all seems so surreal and it’s very hard to explain this to my husband and family when I don’t fully understand it myself…sorry for such a long post!

Welcome Katie,

As we say to all the newbies, we’re sorry you’re here, glad you found us and we welcome you. Yes, you sound like a MAVerick (Thanks @gidlabu for my new favorite term!).

First, don’t beat yourself up. MAV pulls the brain right out of your head. Even we MAV veterans forget to tell our neurologist important information. And, we forget what they tell us. There are tricks.

Let’s get the scary part out of the way. Strokes, aneurysms and tumours are rare. So is most everything else they are ruling out with an MRI. Most everyone here has a totally normal MRI, normal bloodwork, normal hearing tests. Some of us have obvious audiological issues (Menier’s, BPPV, Secondary Endolymphatic Hydrops). Lots of us have vestibular issues (dizziness and vertigo) that starts in our ears. Some of us have true migraine pain, some don’t. Migraine is a much, much more global issue than most people realize. It can cause pain, dizziness and vertigo in all their incarnations, stuffy ears, tinnitus, visual problems, mimic sinus infection, show up as IBS or neuropathy. (Count your blessings for every one of those you don’t have.) MAV can be episodic or chronic, acute or in remission. MAV is a diagnosis of exclusion, which means we rule out everything else first. This site caters to MAVericks as well as all our wobbly compatriots. The treatments, it turns out, are pretty much the same.

Nobody knows what causes MAV. Nobody really knows why certain meds work for some but not others. We just keep experimenting until we find what works for our own bodies.

Read the wikis here. They provide great base info. Then, schedule another appointment with your neurologist in a month or so. If you can’t get sooner than several months, try another practice and tell them you suspect vestibular migraine.

In the meantime, start tracking your symptoms and diet daily for no less than a month or two. Bring that information to your appointment. Ask your neurologist at the appointment to provide you with detailed notes. And, either bring someone with you for another set of ears or record the visit on your phone.

I have, I think, the full gamut of MAV symptoms, though I’m lucky in that I can walk a straight line most of the time. That said, medication, lifestyle and diet changes have given me back a productive, happy, active life. You can get there, too. It takes persistence, perseverance, faith and humor.

We welcome you and wish you luck and good health. We’re here for the journey with you.