Newbie with a 12 year struggle for diagnosis

I’m Vickie and live in the UK. I’m 33 and have been searching for an answer to my dizziness for 12 years.
My story started back in 2001 when I had what they thought was labs, only it never really went away. I saw several ENTs who referred me for cooksley cawthorne exercises which didn’t work and so they referred me to see a specialist at the Neurology hospital in London as they thought I had menieres. After going through some torturous tests I was told to take Serc and follow a low sodium diet.
I spent from late 02 until 2010 just trying to live as best as I could with good and bad times, taking stemitil for the nausea and alternating between serc, propranolol and nothing. The longest I went with no dizziness was 6 months in that time and that was following a very restricted life.Most days I had disequilibrium, brain fog etc
In the summer of 2011 I had a bout of bppv which left me with severe rocking/swaying and disequilibrium and I was bed bound for almost 3 months. Again they referred me to ENT, put me on propranolol and cinnarizine and said definitely bppv after doing the did halpike. All the specialists tests came back normal except for slight bppv on my left side. The doctor then mentioned MAV and I was prescribed pitzotofen and sent for VRT. The drugs did nothing, the therapy helped with the bppv but I still had the constant off balance feeling. But I was feeling better, I went back to work and driving and apart from the odd really bad day it was positive stuff.
Until 1 week ago when I had a bad spinning attack turning over in bed. I performed the epley which has stopped the spinning, but I have been left with 24/7 dizziness, swaying feeling. The propranolol isn’t working I have introduced amitriptylene from tonight as I read they work well together for migraine.
Its bank holiday weekend so I can’t see my gp till Tuesday to try another approach. Because I’ve felt so well this year I didn’t pursue the MAV diagnosis but after reading peoples symptoms on here, I think it sounds like me :slight_smile:

I was wondering if I can take coenzyme 10, vit b2 and magnesium safely along with the propranolol and amitriptylene?

If you’ve got this far I applaud you :slight_smile:

It will be nice if it turns out I have MAV that there are people out there suffering like me who understand that just because I don’t look sick, doesn’t mean I’m fine…

Hi Vickie, welcome to the site. I’m in the UK too. Your story sounds remarkably like my own, except I had a history of migraines before my episode of labs. Do you have migraine in your family or do you have any headaches yourself?

I’ve taken coenzyme Q10, vitamin B and magnesium, also propanol, but not together, so I don’t know if that would be safe or not. I’m sure someone who does know will be along soon to answer your question.

Hope your doctor is helpful when you see him next week. Is he a GP who is really au fait with MAV? Let us know what approach he suggests. And take heart that there are things you can do to make life with MAV very much easier, if it turns out that that is what is definitely diagnosed. Apart from meds, there are diet and lifestyle changes that can be made. Have a nose around this forum, you’ll find loads of helpful info. And just feel free to ask any questions. We all know how it feels to be where you are, looking for answers. Good luck!


Hi Brenda,

I do have a history of severe headaches/migraine but always just treated them with generic painkillers and a dark room as I feel like a hypochondriac as it is! My sensitivity to light, crowds, noise etc is horrendous.
I’m not sure how up together the gp is on MAV but he’s pretty hot on researching new things and his wife has menieres so theres a vestibular interest there.

I know this horrible feeling will diminish again, its just disheartening when it happens as I have normally forgotten how bad I can feel with a bad attack. Its bad timing as i start a new Job in a week or so and wanted to be 95% at least :slight_smile:

I also have fibromyalgia, degenerative disk disease with herniation at L3,L4,L5 and S1

I would imagine Vickie that with a history of headaches and particularly your photophobia and phonophobia etc that MAV is certainly a high possibility for your dizziness. It could be running concurrent with your fibromyalgia and disc issues, with them all most likely exacerbating each other. It can be a very tangled web to unravel. I know there are people here with fibromyalgia and others with disc issues. They might be able to offer some enlightenment.

Such a pity about the bad timing. Isn’t that always the way! But it sounds as if you know the score and how episodes come and go but it’s frustrating beyond belief when you’ve been relatively OK and then a bad patch hits just at the wrong time. If it is MAV then potentially meds, and attention to diet and lifestyle will hopefully mean you’ll have it under control.

Let us know how it goes…


Hi Vickie,

I am from the UK too. My story sounds similar to yours. I was first diagnosed with Menieres at Oxford then basilar migraine. I went on to London to see Prof Luxon and Prof Goadsby, more ENT tests which weren’t really conclusive. Then vestibular migraine and endolymphatic hydrops. I also have a diagnosis of M.E. which I am not sure I believe, its like they gave me that, when they didn’t know what else to do with me. I have the aching, fatigue, reactive hypoglycaemia, B12 deficiency etc. etc.

I have been on the Serc for years but don’t follow the low sodium diet any more. I use the stemetil now and again. I went to Addenbrookes Cambridge where they gave me the C.C. exercises which did nothing for me.

We have more in common, I have a chronic back problem which I have just attended the pain clinic for. I tried a different one in a different area this time as I didn’t get much help from the first one.

As Brenda says, have a look around the forum, theres load of info on here, you could maybe print out and take to your GP.

It sounds like MAV to me.
Let us know what your GP says.