MAV; more than just teenage angst

dizzyupthegirl · April 29, 2007, 11:38pm

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?

thornapple · May 1, 2007, 1:24pm

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.

kira · May 1, 2007, 3:29pm

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.

Brian_B · May 1, 2007, 6:05pm

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.

ajw · May 2, 2007, 11:13am

Hi Selena