Vision relief after 4+months!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[dkdean]

For the first time since my dx, I am feeling more hopeful!!!  I saw an optha at Cleveland Clinic (Lisa Lystad) who sees many Chiari patients....LOVED having my symptoms verified and felt completely heard and understood.  She was the first to diagnose something with my eyes (in dealing with tracking--moving from side to side--which makes me feel like my eyes are hazy; and the darkness surrounding my vision around the edges).  She put me on neurontin (300mg daily)and within a few days, the darkness was fading....she upped the dose at my request (600mg daily) and the haziness is nearly gone!!  I still have the floaters and lines, but I am just so happy!!!!!!!!!

[dkdean]

I should've mentioned the official eye dx : saccadic dysmetria  Dr Lystad says it is a common dx for CM patients.

[dkdean]

Carolyn--I think I have settled into CM and feel well overall...still have numbness on the right side and now some on the left forearm, the constant achy head and neck, floaters/lines in vision--but nothing too bad.  I've had 2 more 'episodes' with stronger numbness that travels, but didn't lose my vision or speech.  And, it wasn't so scary since I knew I'd come through it.  I am very happy b/c I have regained ym peripheral vision--that was such a happy moment for me when I realized I had that back!!!!!!  Making sure I get a full night's sleep (which is such a help!!!) and am much more relaxed about new symptoms that come my way.  I've also taken next school year off (I am a teacher) to stay home with my kids...the last 4 months have solidified my desire to be home :) Hoping to be on the board a bit more--I took a break so that I would stop reading into all my symptoms!!!!!

Selma--I will add her!!


Lu7997--I also see Dr Di and he referred me to Dr Lystad due to the vision issues.  He told me "Well, if you want to go to the best, you need to see Dr Lystad." She said she sees a few CM patients each day and that this vision is consistent with CM.

[lu7997]

I am sooo happy for u. I deal with dr Di  up there. I love that place. So glad u got help. : )

[*Stormy*]

Crazy..that is exactly what my Ohptha said about my eyes..that my tracking was off. I went on neurotin for other reasons but I couldn't stand the side effects so I switched to Lyrica.

Funny I didn't noticed it has helped my vision stuff much but I am sooo glad that it is helping you. Just to have someone validate you is the best isn't it?

How is everything else going for you?

Carolyn

[selmaS]

Sooooo glad to hear u had a positive result and a dr that not only listened but validated and treated an issue sooooooooo many drs ignore.

Please add her name and specialty to our drs list...we should have some drs that r good with these chiari eye issues on there too : )

"selma"