New to the site could I have MAV?

Hi everyone. I am new to the site and hopeful that after suffering vertigo for 34 years that I might have found the reason for it at last. The first bout I can remember was 34 years ago and was extreme vertigo and sickness which lasted several days. I can remember thinking that I must have picked up a ‘bug’ and just waited for the symptoms to subside. Following this bout I seemed to have one episode a year on average. I also suffered really bad headaches but not at the same time as the vertigo. I put the severe headaches down to stress as I was teaching in a particularly difficult school. Gradually over the years the episodes of vertigo crept up to three per year and I started to experience migraines. I seemed to have several kinds of migraines. The most common was centred around my left eye and cheek.( I contracted shingles in my eye when I was 27 and I thought the pain around my eye was a left over symptom of the shingles.) I also have migraines with aura but these are quite rare although very frightening as I lose sight in the affected eye. The third type of migraine is perhaps the worst type and that is an all over the head feeling of extreme pressure and deep throbbing pain. I call these my ‘bicycle pump’ migraines.
Gradually over the years as the migraines increased in intensity and frequency so did the bouts of vertigo.

As I also experience lots of auditory ‘interference’, tinnitus, clicking and pressure, I was referred to the hospital for tests for Menieres which were inconclusive at first but when I was re-tested several years later, this was ruled out.

Last week I turned sixty and I am now suffering attacks every three weeks. If I am lucky I can manage to find the correct angle for my neck and carry on with life all be it slowly and carefully but The frequency and severity of the attacks has left me feeling very frightened for the future. I have restricted mobility due to an operation to remove a ruptured disc which went wrong and the vertigo on top of this means that I cannot go out without having someone with me in case I fall.

I have approached my GP many times over the years and have been prescribed Serc (which did not seem to help) and Cinnazerine for the sickness. I asked to see a Neurologist following the last Menieres test and left the consultation in tears when he told me that unless I had migraines with aura then he didn’t think they were migraines. He told me to keep a food diary and left it at that. His whole demeanour was dismissive and I felt completely demoralised when I left the surgery.

I have been advised to try the Epley manoeuvre which I have done, both on my own and with the help of my husband but with no success.

Reading through my history does anyone think that my symptoms could be MAV. When I have the attacks I feel so I’ll. My legs hurt and I feel shaky and tremble all the time. My head feels huge spongy and of course I have all the feelings of vertigo. In between attacks I often have dizzy spells that can last for a few seconds but they are severe and frightening as they can lead to a fall.

Sorry to ramble on.

Thank you in advance for any advice you can give me .

Hi Anita

You ask does anyone think your symptoms could be MAV. Emphatically YES. Your experience and mine sound very similar.

I have had this for 40 years, I’m 59 now. I had roughly one episode a year on average til I was 45 and a bout of labrynthitis set off a whole new dizzy ball game, also suffering headaches from aged 13 onwards but not at the same time as the debilitating vertigo attacks. I had right-sided typical throbbing migraine type headaches that affected my right eye, right cheek and right side of the face. After the really bad vertigo episodes I always had a week or so of what I used to think was sinus pain but I now believe was all part of the migraine syndrome. I’ve only twice had an aura.

I too have had the auditory symptoms, including tinnitus, plus tests for them - all clear. No Menieres. I’ve used SERC and cinnarizine, which in the long term have proved not to be so helpful although I was grateful for them at the time. I’ve also done the Epley manoevres - they made me feel worse, typical for migraineurs.

Eventually after many tests, including an MRI and a CAT scan plus all the vestibular tests, I was given a diagnosis of MAV. All the vestibular tests proved negative except for one reaction I had which I was told was indicative of someone with migraine (central dizziness).

But it was putting my history together along with the ENT, audiological and neurological reports that really led to the MAV diagnosis. Back then (about 15 years ago) it was pretty much unheard of and I thought the hospital was fobbing me off. But now of course it has a much higher profile although still some doctors seem to flounder with it.

From your history and experience it sounds very much to me as if you might have MAV. Your doctor’s suggestion of keeping a food diary may not be too far off the mark as it was a change of diet that helped me more than anything and marked the beginning of my dramatic improvement. So I would certainly give that a try. I wouldn’t necessarily dismiss medications - there are plenty to choose from and folk on here have had success with a variety of them, we’re all so different as to what works but for me it was the changes in diet that set me off on the right track.

You’ve probably read on here about the book Heal Your Headache by David Buchholz - that was the starting point for me. It’s a worthwhile read both for diet and general info about MAV.

I so understand your fear and frustration - even now when I hit a bad patch it’s always the fear of what might happen because of the vertigo (at worst I can’t even stand up) and I have to be very careful about getting into an anxiety spiral which makes everything ten times worse.

Glad you found us. And good luck with getting a handle on this MAV monster - it IS possible.

Brenda

Thank you so much for your reply I haven’t heard of the book you mentioned but it is top of my shopping list now. I’m suffering a ‘milder’ bout of vertigo at the moment but I am dreading the next attack because it seems to be the pattern of one mild one, then one really bad one. We are due to go on holiday on the 11th September and I am becoming more and more anxious about the trip and the possibility of another , more severe attack. I realise that the anxiety itself could possibly cause vertigo but I can’t put it out of my mind.

I haven’t dismissed the idea of medication, indeed I would welcome it but so far I haven’t been offered any. I’m going to take my husband with me at my next doctors appointment as I must admit I find it very difficult to stand up for myself and request help. I always feel that I am a nuisance to the doctor. Crickey I sound a real whimp. I see tha Doc a week on Monday so I’ll let you know how I got on. Once again thank you so much for your reply it’s wonderful to speak to someone who understands.

Hi Anita,

I have had this condition for over 20 years as well. Plus I have a lower back problem which limits how much I can do. You sound like you have MAV to me.

I have had the severe vertigo attacks (very often if I get one in a week it will be followed by another shortly after) but then I may have nothing for months. I have also had all the ENT tests, inconclusive and then on to the neurologists in Oxford and London, then the diagnosis of Vestibular Migraine.

The book Brenda mentioned “Heal your Headache” is a brilliant book and helped a lot of people on here. I have the book and have learnt a lot from it.

I dont know whereabouts you live, but it doesnt sound like you saw the best consultant for your condition, we can probably point you in the right direction to see someone better.

Christine

Hi Brenda and Christine

Just to let you know that I have ordered the book you recommended and I should get it early next week.

I live in Weymouth, Dorset and was sent to see a neurologist at the local hospital. As far as I know he was not a specialist in migraines in fact as I have set before, I think his specialism was ‘how to belittle patients’.

My sister has suffered dreadful health and amongst her many serious ailments, she too has had awful migraines of the same variation as me. Unfortunately she also has MS so it’s difficult to know just how much of her ‘dizzy attacks’ are down to MS and how many could be down to MAV.
Both my Mom and Dad have had vertigo at various stages of their lives and in fact my Mom still suffers from them. It makes me feel foolish that I had never heard of MAV before with such a family history.

My sister’s migraines were so violent that she had to give up her job. She was sent up to the London Nerve Hospital to see a Professor Goadsby who was extremely good but only treated her for the migraine symptoms she presented not MAV. Since telling her that I had contacted this site, she suggested that I ask my doctor to refer me to him. I know she is used to asking doctors to refer her to specialists, but I’m not. I don’t even know if I am entitled to as for a specific referral. Christine, you mentioned that you could suggest doctors who might be able to help, I’d love to know who they are, distance is no problem and if I have to pay then so be it.

Once again thank you for your help.

Anita

Anita, you are entitled to get referred to Prof Goadsby on the NHS. I was. I went to him for quite a while and he prescribed several different drugs for me to try, one of which I could only get from him as they import it in and its not licenced.

Dr. Surenthiran in Kent is another. Loads of people go to him and speak very highly of him. I have no idea if he is NHS, there are some on this board that go to him so I am sure they will come in here and tell you.

Anita, I suffer with ME as well as MAV, and have had plenty of experience with our wonderful GPs and specialists “belittling patients”. I have just been to a stand in GP, thick as two short planks, who knew nothing about anything, I just wanted to save myself an appt. and journey to the specialist. She hadnt heard of two common drugs I wanted and refused to prescribe me another. I shall have to go back to the specialist. At the end of the day, when you walk out that door, they just go onto the next patient. This is your life, you must push on to get the treatment you deserve :slight_smile:

Christine

Anita,

In answer to your question - hell yes! So much of your symptoms sound familiar.

Don’t be put off by one neurologist telling you you don’t have migraine. A lot of doctors seem to have a very narrow idea of what constitutes migraine. But there are plenty of neurologiests who do understand it - many of them listed on this forum. The other great news is that the treatments (diet and lifestyle) and the range of possible meds are also discussed throughout this forum. Keep reading and you will soon be an expert!

Sorry you have to be here but welcome :slight_smile:

Vic

hi there, you dont have to have an aura to have a migraine. Ive never had one (but i think recently i did) i used to get killer migarines,vomiting,sweating hot and cold no vertigo, the dr usually gave me 2 injections no aura. Ive seen 2 top neuros in aus since ive had vertigo both said migraine without question even though i said its just a headache,( no aura then) they say ive got a history of savage migrane and they say what i think is a headache is really a migrane. Ps i did my back too,was meant to have surgery but chicken out even though i couldnt walk and pain was insane but got an epidurial of some sort, still have a slightly bung leg, so i know your struggle, keep pressing on b/cause i think your a candiate for mav defiantely :slight_smile:

I’d like to thank all of you for your advice, I’ll let you know how I get on at the doctors.

Anita

Hi eveeyone, I really need some help and am struggling with my symptoms daily
Iv suffered migraines for as long as can remember I’m 29 now, I used to get a day or 2 of vertigo years ago which wld be triggered with travel, swings, turning fast, drying my hair upside down ect
Then 2 yrs ago I had my son and about 12 weeks later started suddenly with vertigo and basically its never left me :frowning:
Just before I found I was pregnant I was suffering bad migraines with pins n neddles and other symptoms but no vertigo and had a mri and ct scan and alzo ct scan with dye and all was clear, but the vertigo didn’t start til about 12 months fter those scans
They wont rescan me after iv asked, I have seen my ENT who did some tests like the flushing water in my ears and balance tests and all they cld say was its not ear related I had a hearing test also and was ok, 2 years solid iv struggled with this and noone seems to want to help,
My latest ent I was told I have migrainous vertigo but I suffer migraines maybe 1 a months and regular headaches weekly
They are brought on by smell, sound, lights but worse is smell of perfumes, furniture polish ect and I have a allergy to dust
I guess my question mainly is with can the vertigo be present all the time?
Shouls they repeat a scan to check for more sinister things?
I have just had alot of bloods full blood count, blood picture and all normal so is that reassuring?
I do suffer with anxiety issues which is making me worse thinking I have a brain tumour
I’m a single mum with 2 kids and just feel so down
Cinnarizine and serc have not helped me at all
Thank you for reading
Steph

hi steph i had headaches for about 1.5 years before the vertigo kicked in. Now i have vertigo/balance issues 24/7. I had a eposide where my eyes were giigling around and then it was terrible. having vertigo can make some people anxious, getting the right dr to treat it is key. vertigo is rarely due to a tumor, but if you had ngstamus like me it can freak you out. So you need to get this diagnosed. im a single mum with 1 child and it makes life hard