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