Is This MAV (help)

Hi Everyone

I best introduce myself. My name is Jay and I live in the UK and am 29 years old. My dizzy story goes like this.I woke up one morning in May 2007 spinning horrendously(true vertigo) and was sick. The awful balance and movement of the world from that moment never went away. I had vertigo again upon waking two weeks later and continued feeling dizzy,its been nearly two and a half years. Every single waking second since May 2007 I have been extremely off balance and dizzy. I have not had true spinning vertigo since may 2007 just a constant state of disequilibrium.

I might add that I also experienced vertigo upon waking when I was 19 (ten years ago) it had no lasting effect and did not effect me whatsover and I thought nothing of it.

My symptoms are 24/7 and include:

Bouncing up and down floor when standing still or moving
Brain Fog - I look at people talk but it feels like I look right through them
Fuzzy vision (snowy,static however you want to describe it).
Movement feels out of time with brain (everything feels slow motion).
Constant dream like state.
Cars,people moving infront of me are a blur and make me feel like i am falling when looking at them.
Cannot hold gaze(world seems to shift at all times)
Reading is hard,computer screens are difficult because everything snakes and moves.
I spin slightly when lying down and going to sleep.
It seems the darkness is much darker (night blindness)
Nystagmus only when looking far left and far right
I once experienced 8-10 seconds of flashing white spots (aura) in my vision for the first time a couple of weeks ago.

I have had blood tests,urine tests,ECG,Blood Pressure tests,Caloric test (showing no abnormality)Light box test (following light with goggles on,showing no abnormality),5 in office neurological tests,hearing test(normal results)countless epley’s with no nystagmus in epley position and no relief.Headshake test. 10 months of VRT with no improvement and an MRI two and a half weeks ago which I am still waiting for the results ( I hope no news is good news,fingers crossed).

All tests are normal but I still feel absolutely awful. Symptoms go from bad to worse. I have not had a single day where I feel comfortable or were my symptoms feel manageable. I have never been given any medication as the thought was it may hinder compensation. Unfortunatly compensation has never taken place.

I have been stuck indoors for the past 2 and half years lonely ,frustrated and scared.I feel my life is passing me by and friends and family cannot quite understand.

However I have tried moving as much as possible and keeping positive as best I can throughout.

My question is could my symptoms be MAV?

I was originally told I had labyrinthitis/vestibular neuritis and that it would go away,it has not. Lately I have been told it may be Mal de barqument syndrome ( altho I did not travel at the time of onset,so I doubt it) or MAV. my worry is it is a PLF since I was lifting weights around this time but my specialist does not think so.

I did not suffer headaches before onset altho I do remember two very painful headaches just before this happend to me. I will say that I do get more headaches (2-3times a week) since this started.Not very painful headaches, more a feeling of pressure.

If my MRI scan turns out fine then docs are going to start me on migraine treatment altho I am doubting the effectiveness. What is the best medication?

Could this really be MAV that I am dealing with? since it has been non stop 24/7 for two and a half years.

I would appreciate any opinions.

Thank you

Jay

Hi Jay,

Welcome to mvertigo. Very sorry to hear you’ve been through the wars over the last couple of years but such is life when dizziness arrives on the scene. The good news is that you can clean up the mess.

My question is could my symptoms be MAV?

Absolutely. It can often be a dx of exclusion so the sooner you get onto a migraine med the better. There’s no hard and fast rule of where to start in the drug department but generally people who have a significant anxiety or depression component with this tend to do well on some sort of antidepressant – often at a low dose. That might include either an SSRI, SNRI, or tricyclic. While anxiety and depression present as a “side dish” with this junk, they will also tend to keep you trapped in the migraine cycle. In the science literature it is described as chronic subjective dizziness too.

Note that you DO NOT need to ever experience a headache and you could still have MAV. Some 50% of sufferers never get headaches. Most here experience this 24/7. Is migraine in your family at all? Is there anyone else who either experiences headache or neck pain or anything else that might be migraine-related? The lack of effect from VRT you describe is very migraine-like.

Best … Scott 8)

Jay,

I have had this since June 07, and I am in a constant state of disequilibrium like you. I also share many of your other symptoms. Pretty much all of them. It sure seems like MAV to me. Where do you live? Is there a neurologist that you know of aware of this disorder?

Lisa

Hi Jay,
Welcome to the forum. I am sorry to hear you have been suffering for so long without a definitive diagnosis and treatment plan. I also have 24/7 symptoms, many similar to yours and have been suffering for about 2 years. It took me 1.5 years to receive this diagnosis. Your description sounds like MAV for sure and I hope once you begin the treatment with meds you will find relief. Good luck!
Best,
the other lisa :slight_smile:

Hi Jay, I too think it sounds like MAV. I have many of the same symptoms and also was thinking perilymph fistula early on (I was a light weight lifter before this mess started) but was told that it is extremely rare and very unusual unless there is a definite trama. The people here are wonderful and have a wealth of information and support to offer. Like many here, I am in the midst of trying various migraine preventative meds to help but nothing has worked yet. Good luck and welcome to the Board. Ben

Thank you everbody for all of your replies. I really appreciate it. It’s been a tough thing to deal with as you are obviously all aware. I did not realise so many suffer these symptoms 24/7 for years and that it could be silent migraine causing them. I have looked around this very informative sight and realise I am not alone and that what I have seems to fit MAV.

For so long I was told that I had labyrinthitis so am finding it hard to believe that it could be migraine when I really do not suffer headaches. Now I truly realise headaches do not have to be part of this condition.

I wish all of you the best and thank you for your support.

Hopefully one day soon we can enjoy peace and stillness again.

Thank you

I think you just described my life.

I had my first true spinning vertigo attack (or BPPV) after lying on a bed and getting up quickly. I was barely able to move my head without getting true vertigo for a couple months, until that got better but the constant dizziness and feeling of being unbalanced started. I have absolutely had most of the symptoms you described. I went through all the tests and was diagnosed with MAV, but never believed it, because I didn’t get the headaches! I too, had that feeling of pressure in my head at one point, but as for headaches, I generally only have weather-related ones.

“I have been stuck indoors for the past 2 and half years lonely ,frustrated and scared.I feel my life is passing me by and friends and family cannot quite understand.” - I could have spoken this exact line myself.

My suggestion is to read the book Heal Your Headache. It answered a lot of questions about migraine for me. I recently went on the migraine diet as described in the book, and also went off birth control pills. If I don’t find significant improvement from that, then I will consider medication (for me, probably Zoloft, since I now suffer from a lot of anxiety too).

This board is so helpful, don’t be afraid to ask any questions you might have. Best of luck!

Hi Jay,

All sounds a lot like MAV.
As you are in the UK I would save time and try and see Doctor Surenthiran, a neuro-otologist at the Medway Hospital in Kent.
He knows his way around this and will be able to tell you if, in his opinion, it is indeed MAV.
He will start you on the diet, and then start you on meds if the diet is not enough.
He really knows his stuff and is kind and patient as well as a real expert. Most of us waste a lot of time with doctors that don’t understand this at all before finding him.
You can get a referal from your GP or see him faster privately.
Good luck,

Penny

Hi Jay, it does sound like MAV but I’m no expert; what I can tell you is that it doesn’t sound like anything else I’ve ever heard of. It definitely is NOT Mal de Debarquement…

Best of luck on your trial; hope you get your life back soon!

  • Mikael

— Begin quote from “Jayb”

I did not realise so many suffer these symptoms 24/7 for years and that it could be silent migraine causing them.

— End quote

Just in case you didn’t catch this in the sticky:

[size=130]**Migraine can occur even without headache **[/size]
Though rare, some people have migraines that rarely or never involve headaches. In other words, their migraines only have non-pain symptoms. You may have heard of so- called “ocular migraines,” and this is one example of a migraine that only has only non-pain symptoms (namely, visual symptoms) and no headache whatsoever. But any of the other non-pain symptoms mentioned above can also be the sole manifestation of migraine (Amos and Fleming 2000; Freedom and Jay 2003).

— Begin quote from “Jayb”

I have looked around this very informative sight and realise I am not alone and that what I have seems to fit MAV.

— End quote

This is one of the great things about about a forum like this because it allows people to read through others’ experiences and help to clinch their own dx. Steve Rauch often has his new patients come here to confirm their diagnoses – to see if they relate to what others report.

— Begin quote from “Jayb”

For so long I was told that I had labyrinthitis …

— End quote

Unfortuantely it’s not the first time I’ve heard this one. Doctors who are not familiar with migraine beyond the usual headache scenario hardly ever peg vestibular migraine let alone understand that migraine constitutes a “a global disturbance of sensory signal processing.” It’s annoying that even some specialists can default to a labs or VN dx even after someone has suffered for years on end even having done VRT. There’s simply no evidence to suggest that either labs or VN can last beyond what a typical viral illness dishes out (about a 6-8 week trajectory from start to finish with labyrithitis/VN). The only extended problem involves compensation issues. And if it’s not a compensation problem then the individual almost certainly has migraine acting as a complicationg cofactor.

Best … Scott

To further Scott’s point about no headache…for me, the first 6-8 months were effectively headache free. Now, in addition to the constant dizziness I get the headaches. This disease clearly is unpredictable and variable over time - that I think is one piece of evidence that is for sure!

Hi Jay,

Sounds exactly like migraine/MAV to me. I’ve had this off and on for years and only got a diagnosis a few months ago. Have been doing quite well on a tricyclic (Prothiaden/Dothep) and bumping up the dose now.

Good luck!
Victoria

Wow, I really appreciate you guys spending the time to sit down and reply to my post. Each and everyone of you have given me invaluable info about this condition. I finally feel that i am communicating with people that understand; this alone raises my spirits.

I am going to read the book “Heal your Headache” as suggested by one of you kind people and try the diet. I have to say my diet is not that great. It seems I consume everything that I should not.

Hopefully diet, medication, and time will work and I thank you for sharing your personal experiences and trying to help me. Maybe someday I will be able to post my success story and help others going through this.

Thank you

Jay