Hello to everyone…I thought I write a success story to cheer everyone up since you rarely hear a lot of positivity about MAV, anywhere and I’d like to bring some light to us all and hopefully cheer you on to a happy recovery. (You will get better I’m living proof and trust me I’m the girl who invented Murphy’s Law lol X
It all started around two years ago, like most of you I just woke up with it one day. I woke up so dizzy i couldn’t walk or function. I couldn’t talk and my eyes were twitching back and forth. (Sort of like the exorcist). I felt something stabbing my neck, along with constant ringing in my ears blurry vision, and a numb face. Basically it I felt like i dove into a speeding truck on the highway and bashed out my own brains…….
I went to A+E got rushed into a CT scan, followed by a brain MRI, when they both came out clear with blood work a spinal tap was performed for testing. Doctors were baffled they could not figure out what was wrong with me as every test was clear. And just sent me home with some dizzy pills…
I was housebound for four months in bed, (if you have ever experienced this you know how challenging and soul destroying it can all be). Everything felt like I was a character from Alice in wonderland or something like a 50’s music video where a bunch of hippies are tripping on acid. I had constant vertigo, anxiety attacks and dizziness 24/7, photophobia, blurry vision, and a slow perception of the world (everything was in slow motion). I had no balance whatsoever and walked like I was drunk everything was just pure misery and hell) . I went to specialist after specialist, neuro doctors, ENT’s , balance specialists who didn’t have a clue of what I had. Frustrated as the months went on the only diagnosis I got was labyrinthitis . I knew very well this wasn’t the case as it’s a very rare and takes on average 6 weeks to recover from not 1 year. Finally I joined a support group on Facebook where I met the most amazing people possible, called the labyrinthitis support group, where individuals like me were going through the same thing. This helped me so much in my recovery because I knew I wasn’t alone and that I wasn’t going crazy.
Only Later on, around the 1.5 year mark I found out from my auntie I inherited this from my grandma who had it in the early 50:s” at exactly my age. (She never knew I was ill in the first place). ! She explained doctors then were as clueless as they are now in her matter and she got put on an experimental drug called purple hearts (which then got banned) , stories go that my grandma didn’t leave the house for two years and used to sit in a dark room day in day out, but it eventually went away within in two years.
After the year mark my doctor was upset I wasn’t better and sent me to a specialist in vertigo and neuro disorders. A top doctor I believe. A million more tests were done and everything again came out clear. The doctor who I will not name was as bad as they come and he tried to be smart, so what he did was diagnose me with a psychological disorder he made up. He concluded I was forcing myself to be ill and smugly called it, chronic subjective dizziness,. After a violent argument I walked away considering I might actually be crazy and have gone mad, maybe it was time to accept it all and give up. Funny enough I got a phone call a week later from one student doctor who was studying to be a neuro and was there on placement during my tests, she wanted to see me again ?. I remember her as a she stood by the professor looking really angry but I couldn’t figure out why ?she explained that she was not thrilled at my diagnosis and wanted to see me asap X I figured I been to around 15 specialist doctors why not ? I went and within 10 minutes of seeing her I got diagnoses of MAV. (Migraine associated vertigo), I got asked to try out a few meds and that was that…I was so happy.
The medication that worked the best for me was noritryptoline 10 mg with no side effects. I did go up in dose as far as 30 but found out that the smaller dose bettered my body’s recovery naturally. The meds I have tried include, stemitil, topomax, betablockers ,pitzotofen, amitryptoline and few more but I can’t remember the names noritryptoline is by far the best.
So im here today around the 2 year mark at 100 % but I won’t jinx it lol. A year ago I was at the 30% mark on a good day and would mostly hang around the 20% mark on a normal day! Don’t get me wrong on some days I still get moments where i feel off, or just weird , and slightly dizzy but nothing major and nothing like before. At worst it would be a 90%…, Im on a migrane diet and do not do vrt anymore but have done it for a year and half. XXX There is hope that you will get better and take my advice don’t listen to every quack on the street mainly doctors X…take things day by day keep positive keep busy and remember its not something that goes away magically, it is a chronic illness… .loved ones and people around you have to understand this and most importantly so do you, you can’t force yourself to be better, but when the time is right you will be!!! Much love to everyone out there I know what you are going through, big hugs and best wishes to a fast recovery very soon X XX