I need your help to understand.. do I have MAV

hello everybody, please excuse my english in advance.
I am very confused as I don t know what I have… I have been suffering from visual snow since i was 17… coped with it these years I am now 24. I lived with it just fine as it was mild and not disturbng.My first migraine with aura started when i was 13 and I have suffered from two or three a year since. I have always suffered from general anxiety probably since i got my vs when i was 17, I alway thought it was drug induced.I don’t do drugs at all anymore.
Now this summer I had a horrible migraine with aura, and the day after this horrible sensation began. I must say the week before I felt a bit off and anxiety started because of it.
It is as if I am completely drunk, I can not focus properly. This can happen if I am sitting down without moving or it< can happen standing up, it usually happens when I am with many people around me.But it can happen in other situations too. I can not control it even if I say to myself I am fine. I know I suffer from derealization as sometimes things seem very distant and weird. But this horrible “drunk feeling” is killing me. I know you are not doctors yourselves and have problems you can not answer but seeing that nobody will help me every doctor i see says I am only a hypocondriac. I would like to ask you do you think I have MAv? my symptoms are just this spaced out feeling, lights< start bothering me I see more afterimages and my Vs gets worse. I really hope it is just anxiety it would make me feel better. I have never had motion sickness or nausea.
I am getting really scared its been many months now I am seriously thinking of ending it all
thank you in advance

p.s every blood work test I have done came out fine expect some cervical allignment problem which I am doing physiotherapy for

can i just add… this summer I stopped the contraceptive pill when all of this started… could it be related to hormones?
another symptom I have is that nothing ever is still… it looks like object breathe! coming towards be and going back again

Welcome to mvertigo sunshine. There’s plenty of good information here to help you feel better about these crappy symptoms you have been dealing with and how to solve the problem. The “not knowing” is very distressing. I completely relate.

Please have a read through the Migraine Survival Guide in the sticky thread above. In there you will see a range of symptoms that MAV presents. It doesn’t cover everything because everyone’s experience with this is unique. However, some of the main issues you point out are typical such as the visual snow, the derealisation, and your strong migraine history.

Yes, it can most definitely be related to hormones. This is a considrably large triggger for women. Interesting in Cassada’s case the pill triggers MAV while you coming off was the trigger.

Finally, your experience with the doctors you’ve seen is not uncommon with this. Your average GP won’t know much about this I’m afraid because they don’t go into this sort of detail in medical school with migraine unless they go on to specialise or they have the time to do their own research in the science literature. I used to record lectures for med school students and put the videos on the University Intranet. I remember recording one lecture on “dizziness and vestibular disorders”. There was not one mention of migraine. They hit the usual stuff only: BPPV, Meniere’s and viral causes.

Where abouts do you live? The board may be able to offer the name of someone nearby to give you a proper dx.

Best … Scott 8)

Sunshine,

From what you describe, MAV could be a possibility. Scott has already pointed out that you have brought up common migraine symptoms, and with migraine symptoms and dizziness, MAV is a possibility. It is a fairly new diagnoses (less than 10 years) and not that common, so most docs haven’t heard of it, meaning that most regular docs aren’t able to diagnose it. You pretty much have to find a specialist that deals with migraines and dizziness.

I like your constant drunk description. I joke around sometimes when I am trying to describe things to people and that is one that I sort of use. I like to say that I get a free drunk but without any of the fun parts of the drunk, and all of the “un-fun” parts.

Hormones were DEFINITELY the trigger that started my dizziness - please do as Scott suggested and read the Migraine Survival Guide. It’s really helpful. It’s good to be informed about this condition; from your description it does sound like you might have what we have, but of course only a doctor can give you a diagnosis.

I love my primary care physician, but he had no clue what was wrong with me. He started by thinking it was inner ear - then, because my heart was sometimes pounding, I got an EKG, a stress test, and then wore a 24 hour Holter monitor. After another severe dizziness episode, I ended up in the Urgent Care Center and had a CT scan of my head - nothing wrong, but I got a referral to a neurotologist. HE’s the guy who gave me the diagnosis - he wanted an MRI just to be certain, but he still gave me a handout to read with info on migraine associated dizziness (his preferred term) because he was pretty sure that’s what I had, even before seeing the results of the MRI.

That’s a LOT of testing!! But fortunately for me, it didn’t take years for me to find out what was going on, as it does for a lot of people. Just a few weeks from the first dizzy spell to the diagnosis. I’ve had good luck with medication, too. Hang in there - get informed, and hopefully you’ll get a diagnosis soon too. Best of luck!

Hi Sunshine and welcome to the board,

First of all all the symptoms you describe could most definitely be migraine, particularly as you already a known migraineur. Second thing is you can most definitely get well. There is a great deal of helpful information on this site.

In terms of finding a doctor who understands the myriad symptoms of migraine and how it can definitely be chronic that is luck of the drawer. I’ve been VERY lucky getting several who do understand it (as far back as 10 years ago) but others don’t. There are people on this board from all over the world - if you can let us know where you live I’m sure someone will be able to recommend a doctor who ‘gets’ it.

In the meantime, take Scott’s advice regarding checking out the threads which give you advice on all the things you can do yourself, right now, that can start to help you get well.

Best,
Vic

Thank you so much for your replies… anyways i live in Rome Italy, does anyone know a doctor here or in Italy that can help me?> my sister lives in london I could also try and go over there! I am only 24 my life can not be like this… :frowning:

HI Sunshine,
Your story sounds like many of ours…the symptoms can all vary, but there is an “umbrella” of Migraine that they all seem to fall under. I personally feel it is genetics that are responsible, and that brain chemistry gets tweaked with either hormones, stress, a virual illness or possibly other things. Once the brain gets this hypersensitivity, it can manifest in so many ways. The depression and anxiety that comes with dealing with a chronic illness adds to the whole thing and can be totally overwhelming. I sat here at the computer for weeks with tears streaming down my face reading these stories, and being horrified that I could possibly have something that I would have to deal with for my whole life…I really though life wouldn’t be worth living…
That being said, I managed to find some doctors who helped, and truly this site has been my biggest help. Talking with others who have been “there” and can relate makes me feel connected, whereas in my real life, no one gets it. SO thank God for this site and the caring indviduals on it. Also, there are some seriously smart people on here who know what’s going on with this disease more then most doctors out there. I end up teaching my doctors more than learning from them. I would consider getting on an antidepressant if I were you, as low serotonin is one of the first things that can set this stuff off. I should help you with your mood and anxiety and once you get that boost, then tackling this seems like an easier feat. I’m glad you found us here…take care and don’t hesitate to reach out.
Kelley

Hi Sunshine.
Hormones play a big part in my symptoms. I don’t know of any specialists in Rome or Italy but if your sister lives In London, you could enquire about getting a private referral to Professor Linda Luxon. She can be contacted via her NHS address at the National Hospital for Neurology and Neurosurgery, Queen Square, London, WC1N 3BG. (Tel: 0845 155 5000 or 0207 837 3611 ext 723385) The private clinic is (I think) - 15 Upper Wimpole Street, London, W1M 7TB (Tel: 0207 486 5787).
Hope this helps - good luck!
Sian

Hi Sunshine,
Sorry you are feeling so bad.I am English but live in Italy. I was diagnosed in Italy, but the hospital department gave me strong meds to take and told me to go away for 2 months. I did not feel comfortable with the way they treated me or the way they didn’t seem to care or understand Mav very much at all. They said to take the drugs and that there was nothing else I could do…as you can tell from this site, there is so much else we can do. I have tried since to find a doctor in Italy , Florence, Rome, Milan , but have had no luck at all in finding this kind of specialist…let me know if you find someone.
If you can travel to the UK another doctor who knows all about this illness that you could try , is Dr Surenthiran at the Bexley Heath hospital…near London. He is a balance specialist and knows a great deal about MAV.
Good luck in finding the right doctor and getting well.
Penny

This may sound like a stupid question… but can mav be cured? i know I have to live with visual snow and palinopsia ecc for the rest of my life… but can this horrible spaced out feeling go away?
Has anyone’s ever gone away without taking long term meds? after my experience with drugs when I was younger, I am terrified of anything :frowning:

Hi Sunshine,

Presently there is no cure for migraine but it is entirely possible to either 1) have it slip into remission for a number of reasons, some of which no one really understands, or 2) manage it so that you increase your threshold and are no longer triggered by things in your environment. The latter requires removing known triggers from your life and if that’s not enough then adding a migraine medication to force an increase in threshold. Once your head is well and truly above water again, you should remain asymptomatic. Not cured per se, but the beast is put back to sleep.

S

Hi Sunshine,

I really hope things make a little more sense to you now you’ve found this board, and you can feel a bit more optimistic about life. However lonely and isolated you feel, you can log on and realise that there is a community of people all over the world experiencing exactly the same crazy symptoms.

In terms of specialists, another suggestion is Dr Andy Dowson, his private practice is in Guildford - a half hour train ride from london. He’s pretty down to earth, and would probably be happy to offer you some follow up advice via e-mail/telephone after an initial consultation as you’re not UK based.

Sounds like London will probably be your best option, hope you find some help soon,
Hx