I’m just curious how long everyone has suffered with MAV. My neuro said he has had some people that this has just gone away for with no rhyme or reason, for others it burned out over time with meds and others suffer & have to be medicated for years. He wouldn’t really give me statistics but I think the latter one was the most common from what I could tell. I have had this almost 3 yrs at this point with no let up. What have others experienced?
I’ve had this for 2 years, 5 mos, and 2 years, 3 mos with absolutely no let up. For some reason when I first got this, I had periods of wellness, but that was only for the first 2 months of this.
I have had this dreaded condition for 1 year and 5 months with no real improvement with various meds yet. I remain hopeful for all of us, however.
I think we all have to remain hopeful, as best as we possibly can, and remember that these statistics are a little biased. I keep on trying to remind myself that there are many people cured by meds who are not posting on these forums. We tend to not hear many success stories, except for the wonderful few who still check into this forum even though they are better and living there lifes. If there is anyone better from this illness and checking, i would LOVE to hear success stories. That is what gives me hope
Diagnosed July 2008 though I believe it started 2007 in the fall with mild symptoms at that time.
My first vertigo attack was April 30, 2006, just after my 21st birthday. I will never, ever forget that day, and just thinking about it makes me cry.
The daily MAV started in the fall 2006, so a little over 3 years for that.
For me it’s been 39 years. And I’ve shocked myself writing that! The past 13 years have been the worst, although I do have better days, unlike some, for which I am grateful.
I have had classic migraine (with scintillating scotoma but no headache until the “hungover” after effects) since I was a teenager (I am now 38).
While I only got a MAV (or “migraine cycle with vertigo”) diagnosis earlier this year I have had MAV episodes for the past 10 years. These episodes have lasted anywhere from a couple of weeks to several months and prior to being diagnosed and medicated had burnt out of their own accord. Severity has ranged from uncomfortable but tolerable (ie still able to work) to being house bound for weeks. Some episodes have also waxed and waned with either single days or strings of days being symptom free.
The unpredictability of this condition is a major frustration.
I’ve had migraine symptoms at a very low level off and on since I was a teenager, possibly even younger than that. But it was in 1997 that neck pain became a real issue (didn’t know it was migraine). Then I blew the lid off the pot in 2003 with a massive hit of VN. Migraine went crazy from the neurological meltdown that ensued. I’ve had MAV ever since –– 6 years, 2 months, 8 days.
First vertigo attack was a lot further back, but for 10 years there were not many and I was OK in between. When it came to the everyday stuff it has been going on for over 20 years.
It’s been almost 3 years for me. I am glad I found this site because I have never met someone like me. Hopefully we can all get the answers we are looking for and help each other get through this.
My first vertigo attack was 10 years ago upon waking when I was 19 altho this had no lasting effect whatsoever. Then three vertigo attacks each upon waking over a period of two weeks in May 2007 which have left me like this. So it has been 2.5 years of constant dizziness for me.
A little over 1 year at this point. 1 miserable year.
I had vertigo for the first time after I had ear surgery 10 years ago. Then it would pop up every once in a while. Three years ago it came back to stay, migraines joined it. Time to go away buddy. I have had enough of you. I want my life back. I used to have a pretty good life.
Funnily enough I was just thinking on that one before I got to this site. I’ve had migraine headaches - maybe two or three a year - since I was about 11. But this MAV lark kicked in August 17th 2007 so two years and three months. Came in from work one day and suddenly felt the whole of my right side balance shift…as though I had been “tuned out”. After that…over next three weeks…had a constant headache and increasingly disturbing episodes of dizziness. 8 weeks off work with marshmallow walking, constant light-headed/full head feeling, tinnitus, aching ears, full ears, juddering vision, ghosting, nausea, night dizzies, dizzy dreams, feelings of novacaine wearing off one side of my face. Then back to work. And since then an array of symptoms and NEVER one day without. Most days now I wake up OK, but within a few minutes of walking from bus towards work, I come over with a weird head sensation and my legs sometimes feel as though not connected. Head feels full of helium, eyes get heavy and feel scrunched or frozen (cold wind feeling). This can last all day. Or fade off around lunch time. Often have low-grade headache and annoying “thump thump thump” in back of head/neck when getting up from desk.
This disease is hideous in that we look normal, act as normal as possible, do everything to keep any sense of normality but are, basically, living a lie. I NEVER feel well. My GP has said he can think of nothing else to help me and that I should not dwell on my symptoms. :x Does he think I am creating these symptoms deliberately…??
Have tried topiramate (severe…and I mean severe…depression within 3 weeks), lamotrigine ( continuous nausea and bloating). Very wary about trying anything else.
No-one yet in the medical profession - GP, neurologist, neurotologist - has given me one rational explaination why MAV should be persistent, 24/7, chronic and insidiously pervasive. Simply impossible for every day to be triggering the migraine response as every day is different. What a farce.
Thanks everyone for your responses. I try hard to believe that everyone on here is the “worst case scenario” & that there are probably tons of people who get on medicine & get back to their normal life without ever joining a group like this, but I don’t know. I’m ready to start my next drug trial. Something totally different than what I’ve done before so I’m keeping my fingers crossed that this might be the one. Ali1360–I totally identify with your comment of living a lie. I try so hard to act normal around other people when inwardly I’m feeling so sick! The only way anyone can tell there’s anything wrong with me is that I wear my sunglasses inside pretty much everywhere I go. I sometimes explain about the fluorescent lights but most times I just let people think I’m cool!
The MAV like symptoms began approx 1989…and had the Big Crash in 1992 (the year the condition went chronic). I didnot get diagosed with MAV till 2006 at UCLA…prior to that doctors thought it was an inner-ear condition with anxiety. Motion Sickness is something i have never out grown and i’ve read where many folks with MAV have issues with Motion Sickness. For example…driving thru very narrow curvey roads in mountains, or Carnival Rides that go in circles…things of that nature. Also…i will never in my life time be able to go travel on a Cruise Ship. I would get sicker than a dog…i know it!
Now that I am a little more “migraine educated”…I think migraine may have started at 22 yrs (I am 27 now), but at the time was misdiagnosed. Vertigo component didn’t start until for months ago (birth of my son).
I’m amazed that so many of you can acutally pin point when this started. Now I wonder if I really do have MAV as I can’t say one day I didn’t have it and the next I did.
Did mine start with my first migraine in 2nd grade? Or was it in 5th grade when I couldn’t stand near the edge of the stage because I got dizzy? Or was it in 7th grade when I got slight vertigo in the dentist chair? Or was it in high school when I would get so nervous in class because the desks and chairs we used seemed to have so much empty space around me that they made me feel wobbly and as if there was nothing there to support me if I fell? Or was it in college when my motion sickness got much worse? Or was it in my 20’s when I realized I felt motion sick pretty much all of the time? Or was it in my 30’s when I experienced my first severe rotational vertigo spell? Or was it is my 40’s when my motion sick dreams started? Or was it in my 50’s when I experienced the first of many extremely severe vertigo attacks (100 times worse than those suffered when I was 30 something)?
I really can’t say if I’ve had it 2 years for 45 years. I’m stumped.
I know exactly what you mean.
While in the past there were certain episodes/symptoms which I could easily see were migraine, there are others which I only know in hindsight, following a diagnosis of MAV.
Previously doctors would scratch their heads and suggest I must have a virus (the default position for anything weird which can’t be otherwise explained). This is true for things like gut problems, vague “dizziness” or unwell feeling, pain behind the eyes and so on. It also never occurred to me that things like sensitivity to light, noise, crowds, motion intoloerance etc was in any way related to migraine.
My own default position now is that anything weird and not otherwise explained is migraine related.
My hope is that the medical profession (other than a few specialists) will start to realise that migraine has many variants, including constant/cyclic variants like MAV. Too many seem wedded to the idea that migraine has a precise start, arc and finish. Given that approx 15% of the population suffers from migraine I don’t think that is a big ask.