Three years Sick- help please

Since November 18, 2009 i have been sick with 24 hour vertigo, the feeling of rocking on a boat has been with me everyday except in trains, cars and whenever moving following a morning where i woke up and the room was spinning, at the time i was under a particularly large amount of stress with final exams.

I have seen countless doctors and had believed it was uncompensated labyrinthitis, when it struck me that recently that perhaps ive had migraine vertigo all along, i have blurry ‘snow’ vision, extreme light sensitivity problems with patterns, difficulty concentrating, also a quote from another poster describes a further symptom " World is “warped” and very surreal. As if looking through the world through odd lenses. This feeling is always there. Particularly prominent in the dark. We liken this feeling to constantly looking through a video camera lens or a fish tank. World feels like a dream also."
anxiety and many of the symptoms listed for MAV, what medications could help me? nortrpyline? can this be cured by a single medication, thank you any help would be very appreciated as i have been suffering from this beast for too long.

A bit of background history: i used to play computer games for 16-20 hours a day i wonder if this has caused Migraines, also note i never get headaches but feel dizzy 24/7, could this problem be migraine related?

Welcome Simon,

Please have a read of the information on this forum which will answer all of your questions. Start with this fact sheet:


Hi Simon
You’ve been a long time searching for answers - am sure you’ll find those & the help you need here! Using a computer for however long wouldn’t ‘cause’ migraine which is an inherited gene. It may well have been a trigger for you but then so could a thousand other things, particularly stress. Unfortunately there is no ‘cure’ as such - just finding a med to keep it under control. Many of my symptoms are similar to yours. Am now trialling Topamax.

Thank you for the replies, im also from Australia, Sydney specifically, ive been told everything from im crazy to its a tumor ( what a shock that was) and glad i didnt have one, prior to that day in november 2009 i had none of these symptoms they literally started over night and have been with me ever since.

Mine started in April 2009 overnight just like you. I am the same in terms of 24/7 symptoms which are improved if I am in motion. I have been diagnosed with migraine vertigo and have been on nori since last September. It seems to have helped me although I am not symptom free by any means. It certainly sounds like you could have VM. Hope this forum helps you get better x

Welcome to the forum. You will find a lot of support and answers here. Many of us were perfectly “normal” until we weren’t. It’s a bummer for sure, but things can and will get better.

I just read there is a contion that sounds exactly like yours . Its called mal de desembarqument syndrome. Im sure i spelled it wrong but it is the feeling of always being sea sick. But once on movi.g vehichle it goes away. It usually starts after being on a boat. There is no cure though :frowning: . U should look it up.

If you’re in Sydney maybe schedule a visit to Dr Granot, Neurologist, to give you some professional advice. He is an expert in diagnosing & treating Vestibular Migraine & has helped many of us on the forum. I found him to be very thorough & approachable & a nice guy.

I’d second that. Check out Dr Granot in Bondi Junction. He’s great. S

A third fan/patient of Dr Granot here. Go see him Simon - he’ll figure this out for you.

You know, I might just have to go and see granot too - I’m feeling left out of the granot fan club :lol:

Thank you :), i will enquire about Dr Granot, im just wondering though whether anyone has been spontaneously cured of this horrible 24 hour rocking feeling from say Nortriptyline? or any of the other migraine drugs, i dont care about the rest of the symptoms but i hate the boat feeling the most, and it did not start after travel, but during a particurly stressful period of my life ( final UNI exams) so im sure its not Mal De Barquement.

Thanks for everyone’s responses.

Simon mine wasn’t so much rocking as I woudl stop but the world would seem to keep moving, and sometimes I’d have “rubber floor” where everything felt spungey. Meds have killed that one so I only get false motion sense when I’m having a really bad day, and they aren’t that often anymore.

Like you I just woke up this way one day - and it wasn’t even a really stressful period of life or anything - just BAM. I too never / rarely get headaches, and nothign I woudl classify as a migraine headache. The dizziness and associated symptoms are my main issue - although I do sometimes get auras. My vision thing is kinda like yours, but I describe it as though I’m looking at the world through a pieve of glass/plastic that rolf harris is wobbling (like his wobble board). Again meds pretty much killed this symptom for me

I wouldn’t say the med relief was spontaneous - took a few months to kick in, but when they did … party time :lol:

The rocking is quite a ‘common’ symptom of MAV. Many of the forum members have it (have had it) relieved by meds. I’ve never heard of anyone being spontaneously cured tho. The meds take a while to work. I started off on Nortriptyiline, then switched to Dothep (another tricyclic). I had awful headaches which were helped by the Dothep. I’m finding the Topamax is helping the rocking/balance/being on a raft problems a lot more. Mine started after doing VRT exercises.

Thank you for all your advice, i really want this rocking to stop i have to say at junctures in the past nearly 3 years it has caused me severe depression :frowning: i want this beast gone

I was saddened to read your post, as I know how debilitating and depressing chronic rocking is. i have had this symptom since 2007, along with other neurological symptoms. but, this rocking is by far the most debilitating of symptoms. i was recently diagnosed with Lyme Disease as well as the coinfection (Babesia) as the cause of this vestibular dysfunction. If you wish to read my story it can be found in the Other Illnesses and Conditions section under Update: Lyme Diagnosis after Over 5 Years of Suffering or can see here: viewtopic.php?f=31&t=6017 you’ll see there was a bit of back and forth over this diagnosis, so hopefully you can read both sides and see if you think it’s worth ruling out for yourself.

im hoping it is as simple as MAV, and nortriptyline or topamax will cure my issues, have a refferal to see Dr. Granot so look foward to his input.

Good luck!!!

Thanks Lisa, i hope your issues improve too