MAV; more than just teenage angst

Hi, my name is Selena, I’m 18 years old and live in New York City. First and foremost I would like to say that I think everyone who participates in this forum is amazing, and so strong and brave.

Since I was little I’ve gotten periodic bouts of vertigo, traditional migraine and dysequilibrium, as have my dad and paternal grandmother. However these bouts only lasted about a day or so.

Just after my 17th birthday, something in my body radically changed, I’m not exactly sure what happened but something obviously made my biochemistry shift. For the past year of my life whenever I have tried to walk, the ground under my feet has not felt solid, almost like I am walking in pudding. Basically, I can’t walk more than a few blocks. I have sensory sensitivity to light, motion and occationally sound. Oh and I’m extremely tired all the time, if left to it I will sleep for like 12-13 hours at a time.

I have no vestibular loss, minor BPPV in my left ear and a tentative MAV diagnosis. I am currently on effexor and following a riboflavin + magnesium regime. I also have been doing timothy hains tai chi exercises.

I am soooooooo depressed. Before I got sick I was a straight A student, I had great group of friends, a boyfriend, a upcoming internship at a law office. Even more depressing, I was college bound… now I have to defer my admissions. All my friends are out experiencing all that youth has to offer and here I am… watching law & order reruns or something equally exciting.

I know its inevitable, I know that everyone has to deal with sickness, I just thought I had a couple of decades to go before it became such an everyday reality. On occasion people have said to me “you should be greatful you’re not dying” umm not to be morbid… but we’re ALL dying, some just faster than others. At a certain point it becomes a quality of life issue. I really am trying to gain perspective, because I am well aware that I am VERY, VERY lucky compared to a LARGE percentage of the world. I watch a ton of documentaries and read a lot of nonfiction to keep me grounded but sometimes its just not enough. It is so depressing thinking that my 17th birthday will be the highlight of my life. Seriously, what will become of me?

Hi, Selena,

I am a 56 year old grandma, and I am in the same “boat” as you!

Mine was off and on from some time in my twenties and didn’t get worse until after menopause. Then it got so bad it was really serious.

I was put on 120 mg of time release verapamil (veralan) and 25 mg of topamax. I also went on an anti-migraine diet for months, which did not really do much except help me identify that chocolate could be another trigger.

The topamax did the trick. I had to go off of it after a few months because I had experienced every side effect it has, except kidney stones. But I am no longer walking on pudding. I still get very tired, but I have additional vestibular issues (a little tumor in the right ear).

Identifying triggers is helpful. I will get a two-day migraine event if I eat potatoes or anything with potato additives in it, so I avoid them like the PLAGUE, along with the rest of that plant family (solanaceae or nightshade family). Avoiding dark beers, another of my triggers, is a little more difficult ( :lol: ).

I understand about the depression. I think the worst thing for me is I am so tired, it is kind of limiting. My life is quite different from what it was. At the age of 17 you must feel like life is siderailed. But it is not.

You WILL have a wonderful, fulfilling, and exciting life! You will be a straight A student again. I finished college at age 42, and I am sure you will not have to put it off that long. My GPA was 3.86 and I was having MAV fairly often. You will learn how to cope and how to avoid your triggers.

You will be ok again.

Selena,
My daughter had a similar experience to yours: she was hosptalized at age 15 with a status migraine that was primarily vertigo, and afterward she suddenly went from a healthy person with friends, great grades, boyfriend, etc, to a very sick person who was pale and ill with vertigo most of the time.
She hung in there: her friends dwindled, and her boyfriend left, but she finished high school with great grades. In retrospect, playing the saxophone daily could have been a huge trigger.
She was put on notriptryptiline and it took about 6 months to find the right dose–she’s very sensitive to medications. She also takes magnesium, riboflavin, fish oil and coQ10.
She’s finishing her first year of college, and her only accommodation was a single room
Just last week she woke with spinning vertigo: and her response was to take a motrin, skip the shower, fill up a large water bottle and go to class.
I also have migraine associated vertigo, with an underlying nerve damage and I know how hard it is to have a “hidden disability”.
At your age, you should feel invincible and have all the opportunities in front of you. It’s hard to feel limited, and so many of your friends don’t understand how it feels to deal with chronic illness.
All I can tell you is that you’re not alone, your frustration has real basis, and in all likelihood, things will get better.
There was an internet site called “but you don’t look sick” and a young woman with lupus explained to her college roomate how much effort it took her to get through the day. Perhaps it will be helpful.

butyoudontlooksick.com/2004/ … y.php#more

I know exactly what you mean about the pudding. I’m better, but have limits, and that’s hard to accept. My daughter is better, and living her life with MAV.
Best wishes.

Selena,

There is hope for you. Myself, just a couple of years ago, my MAV was getting so bad that I was considering quitting my job and applying for disability.

The others have given you good advice already, one of the keys is to find your triggers. Like Thornapple said, try the migraine diet, and then after a month or so, try cheating on it occasionally to see if something sets you off. If it does, avoid it. Then there are the meds and those take seemingly forever to work once you find one that works for you. One other thing, when you are feeling up to it, try to get out and move around, excersize, go for a walk (I know that one is hard for most of us) anything to get the blood flowing.

Above all, don’t expect immediate results, and keep at it.

Hi Selena

— Begin quote from “dizzyupthegirl”

Hi, my name is Selena, I’m 18 years old and live in New York City. First and foremost I would like to say that I think everyone who participates in this forum is amazing, and so strong and brave.

— End quote

Thank you. It is going really well and it is encouraging to see so many people here sharing ideas. Wish they didn’t have to be here of course, but we can work on that.

— Begin quote from “dizzyupthegirl”

Since I was little I’ve gotten periodic bouts of vertigo, traditional migraine and dysequilibrium, as have my dad and paternal grandmother. However these bouts only lasted about a day or so.

— End quote

Me too. Mine started very young - in the single digits. The bouts of vertigo were awful - full on spinning for 2 to 3 days along with light sensitivity and vomiting.

— Begin quote from “dizzyupthegirl”

Just after my 17th birthday, something in my body radically changed, I’m not exactly sure what happened but something obviously made my biochemistry shift.

— End quote

Me too, again! I was 17, a few months from turning 18 when I woke up dizzy and have never felt the same since (I am now 27).

— Begin quote from “dizzyupthegirl”

For the past year of my life whenever I have tried to walk, the ground under my feet has not felt solid, almost like I am walking in pudding. Basically, I can’t walk more than a few blocks. I have sensory sensitivity to light, motion and occationally sound. Oh and I’m extremely tired all the time, if left to it I will sleep for like 12-13 hours at a time.

— End quote

Awful symptoms - but very typical - and hard to explain to doctors - many tend to disregard symptoms like these. A good neurotologist will listen to even the most obscure of symptoms though without judgement.

— Begin quote from “dizzyupthegirl”

I have no vestibular loss, minor BPPV in my left ear and a tentative MAV diagnosis. I am currently on effexor and following a riboflavin + magnesium regime. I also have been doing timothy hains tai chi exercises.

— End quote

I am really glad to hear you are trying the basics first (exercises, b2+magnesium). Is the Effexor working at all?

— Begin quote from “dizzyupthegirl”

I am soooooooo depressed. Before I got sick I was a straight A student, I had great group of friends, a boyfriend, a upcoming internship at a law office. Even more depressing, I was college bound… now I have to defer my admissions. All my friends are out experiencing all that youth has to offer and here I am… watching law & order reruns or something equally exciting.

I know its inevitable, I know that everyone has to deal with sickness, I just thought I had a couple of decades to go before it became such an everyday reality. On occasion people have said to me “you should be greatful you’re not dying” umm not to be morbid… but we’re ALL dying, some just faster than others. At a certain point it becomes a quality of life issue. I really am trying to gain perspective, because I am well aware that I am VERY, VERY lucky compared to a LARGE percentage of the world. I watch a ton of documentaries and read a lot of nonfiction to keep me grounded but sometimes its just not enough. It is so depressing thinking that my 17th birthday will be the highlight of my life. Seriously, what will become of me?

— End quote

All I can say is try to have a long term view. i.e. this is only temporary - and I will work towards making things better.

I am still dizzy 10 years on, but it hasn’t slowed me down any. I have a very fulfilling and satisfying career, as a software development consultant and a director of another IT&T company of my own. I own 3 pieces of real estate, am married and have my first child on the way. If I look back at what my perspective was like 10 years ago, I would not have expected any of this to happen by age 27.

Things have gotten vastly better since those days. I must say my main advice will be to stick close to people like the ones on this forum and learn as much as you can. Unfortunately there is not a lot to learn about the actual physiological cause of migraine associated vertigo (or migraine in general) as it is not well understood, but plenty of people are successful in treatment of the symptoms (and thats whats important yeah?). There is promising research in finding the genetic cause of migraine-associated vertigo by a team in California at UCLA. In your case this sounds particularly pertinent (being obviously familial in your case).

You will find the right treatments for you with trial and error. For me, its regular exercise, avoiding food triggers (these can be hard to find - need to stick to an elimination diet for a while), avoiding undue stress, avoid undersleeping/oversleeping, and I currently take magnesium, neurontin and pizotifen on a daily basis. With this level of treatment I am able to feel well most of the time and I generally work full weeks (for me often 60 hours or more). It took me 15 migraine preventatives to find the right combo for me.

Keep your chin up, you will definitely get there.

Adam

Thanks for all the responses. Sometimes its just nice to know you’re not alone. :slight_smile: