Hey guys...

I am vested and determined to get to 100%. That said, I want to make sure I am not missing anything about my diagnosis. I told my husband about subs and his re-evaluation at month 12...that got him to 100%...I just want to make sure I am doing everything that will get me there.

1. For those of you who were evaluated by an eye doc. Did you see a optometrist, or optomologist?

2. Does this sound typical of eye junk: Not only do my symptoms ramp when I turn my head, busy places, stores...But...

My eyes also feel funky when I am looking at one thing (head fixed)...and without turning/moving my head I move my eyes to another object. It feels as though they are having depth problems still? Make sense?

3. I remember prior to this stuff that occasionally my eyes would move left to right (nystygmus I know it is called now). It only happened occasionally...and I use to chalk it up to being tired. Could this be something I should mention and could it be something that could be slowing my recovery?

4. Could I have a bit of MAV? Don't really know much about it? Had 1 or 2 migraines before...but early in my life...

I mainly feel whirry in the head, eyes feel funny...like they don't always work together. Bit of a slight head ache...almost like my head hurts because my eyes are off? If that makes sense?

Thank for your input. Honestly, with this illness you have to steer your own ship...If you don't search for answers...no one seems willing to help out...

All the best!

Hi Charlotte,

You're right, with this illness, the squeaky wheel gets the grease. Obviously I can't tell you if you have mav. I can only tell you what I know. It is a diagnosis of exclusion. There are not tests that can prove you have MAV. At the neurotology clinic I go to it isn't uncommon for them to start people with VRT on the assumption that they may have VN. If they aren't making enough progress and it looks like the VN might not be resolving itself, they move on to migraine preventative medication. When that works, they know the problem is MAV. I know that this happened to Dizzyrascal on this board - he had a VN diagnosis initially, then got well when he took pizotifen.

Some people, like me, have tell tale signs that it is MAV not VN. I am hugely sensitive to light when I am dizzy. Although the light sensitivity only started 3 yrs in to this whole ordeal. For other people the symptoms of MAV are exactly the same as and indistinguishable from VN.

I tend to feel that if someone has been ill a long time and doesn't feel that they are making too much progress, or keep slipping backwards, then it is definitely worth looking in to MAV and trying a preventative medication.

It's definitley a pointer that you have the capacity for migraine as you had classic migraines (headaches) in the past. Migraine can change in nature - moving from headache to dizziness. Although it doesn't make it definite, clearly a migraine sufferer can get VN and to make things even more complicated, those who have ever suffered from migraine, for reasons they don't understand, have a harder time compensating for VN.

I got to a point where, although I had shown improvements, I simply wasn't getting well in the way I felt I ought to be. At that point I talked to the neurotology department and pushed to try migraine medication. Like you, I felt if I wasn't my own advocate I might never get well.

The preventatives aren't a total cure, migraine isn't curable. But they have afforded me long, long periods of remission where I have been almost 100%, well and back at work. Unfortunately I am currently in a relapse. My big trigger since being on the preventatives is panic attacks. I panicked on a flight as I am scared of flying and unfortunately triggered so far 9 wks of symptoms. Fingers crossed it will go again soon. Having been free of this illness, living with it again is horrible.

best,

Subs, joy...joni, jayne...jax...everyone...what do you think?

Hey guys...

I am vested and determined to get to 100%. That said, I want to make sure I am not missing anything about my diagnosis. I told my husband about subs and his re-evaluation at month 12...that got him to 100%...I just want to make sure I am doing everything that will get me there.

1. For those of you who were evaluated by an eye doc. Did you see a optometrist, or optomologist?

I saw both an optometrist and an opthomologist, both who new NOTHING about vestibular disorders. I then saw a developmental or behavioral optometrist (they look more at eye function than just sight) to look specifically at how my eyes were working together. I don't think this is necessary for most people. I took this route because my eyes never worked together and it was stopping me from doing the VRTs.

2. Does this sound typical of eye junk: Not only do my symptoms ramp when I turn my head, busy places, stores...But...

My eyes also feel funky when I am looking at one thing (head fixed)...and without turning/moving my head I move my eyes to another object. It feels as though they are having depth problems still? Make sense?

My eyes still always feel a little funky. Today I feel REALLY good, but they still feel a little off. Working too hard? I've never had depth perception so I couldn't lose it!

3. I remember prior to this stuff that occasionally my eyes would move left to right (nystygmus I know it is called now). It only happened occasionally...and I use to chalk it up to being tired. Could this be something I should mention and could it be something that could be slowing my recovery?

This is interesting. I would talk to your doc about this. Definitely sounds like something that could have slowed down the compensation process for you.

4. Could I have a bit of MAV? Don't really know much about it? Had 1 or 2 migraines before...but early in my life...

I've questioned this for me all along too. I don't think its a factor for me. If you've had migraines before, it could be. I would go with your gut on this one

I mainly feel whirry in the head, eyes feel funny...like they don't always work together. Bit of a slight head ache...almost like my head hurts because my eyes are off? If that makes sense?

Again, maybe because they're working soooo hard? I feel the same way.

Thank for your input. Honestly, with this illness you have to steer your own ship...If you don't search for answers...no one seems willing to help out...
Ain't that the truth!!!!!!!!!!!!!!!!!!!!!!
All the best!

Things I've read say people can have residual effects for up to 2 years. For me I feel that that last 5% could be considered residual effects and I'll be 100% soon enough.

Have you tried adding the patterns yet for the VRTs? That could help work on the store thing.

Feel good!!!!
Joni