I just need to talk to people who understand what I’m going through. I have been having vertigo for 4 years. It started out as short little attacks and has progressed to the point I have to use a wheel chair. This last month has been the worst it’s ever been. I have been crying non stop and stuck in bed. Doctors have only gave me pain killers for the migraines and serc for the vertigo, none of it is helping. I’m only 26. I am heartbroken. I have been putting off my wedding because Im scared i won’t be able to enjoy myself with all my symptoms and I’m scared ill never be well enough to have children. I finally found an ENT that treats MAV and I have my fingers crossed that I can get part of my life back. I heard getting on the right meds can help. I hope someone can reassure me that their is a light at the end of the tunnel. I feel very alone, no one I know understands, I have actually been accused of being drunk at work.
have you seen any type of specialists? neurologist? neurotologist? otoneurologist? you should have a full workup and testing done to rule out other causes- mav is a diagnosis of exclusion- so you need to rule other things out before assuming you have it. What does your GP think?
Sorry I forgot to mention that I’ve had a lot of testing done. I saw a neurologist, cardiologist, and now an ENT. I’ve done a cat scan, 24 hour heart monitor,blood work, and my ENT sent me to a dizzy clinic for a wide range of tests. So far all has came back normal, but I have not got the results back from my ENT yet. She told me She was pretty sure it is MAV even before all the testing. I see my ENT on the 26th for my results. I just pray she can help me.
I think you’re right. Out of all the doctors I have been to, she is the first to suggest what it might be. Every other doctor has looked at me like I’m crazy. This ENT is straight to the point. I am really looking forward to my appointment. This last 4 years has been a nightmare. I feel like I’m in a different world.
Your ENT is undoubtedly going to be able to help you. You’ve had loads of tests - probably don’t need anymore but as this condition is one of exclusion it’s good to have all bases checked. There are many meds that can get MAV under control and give you your life back. You will be able to enjoy your wedding and see that light at the end of the tunnel.
**Believe me. ** I was in MAV hell too three years ago. Couldn’t find a doctor who knew what was wrong with me. When I eventually did find a specialist who understood Vestibular Migraine and could treat it I was on my way to recovery by trialling meds. It wasn’t always easy but helped with the amazing support from so many on the forum who do know what it feels like to be dizzy 24/7! Now you have found our site, read all the literature you can, ask whatever questions you have and keep us posted on your journey to recovery.
Oh wow your story sounds like mine and my heart goes out to you. I am also in a wheelchair if I have to leave my house, but even that is becoming intolerable due to the motion. I also have had it for four years and have only recently started trialling meds and I have also been putting off my wedding because I want to be well for it.
Although I do a four yr old and a two yr old, i am 23. I had a pregnancy with mav, it wasnt controlled at the time and i did it, although at that time i wasnt in a wheelchair and i actually improved during pregnancy, the birth both times set me off but if you have a med that works then you just jump straight back on.
If you need to chat pm me