This past Wednesday, September 23rd, I had my first appointment at the Johns Hopkins Headache Center. I had been waiting for this appointment for months! Way back in May I called and was put on a 6 month waiting list. I had all my records faxed in, filled out the 20 some page questionnaire and I was approved to see Dr Rosenberg.
He was a very nice man, and he really knew what he was talking about, which made me happier than anything! He is the first doctor I have seen that has recognized that visual snow and migraine aura are two different disorders (THANK YOU!!!).
And then he told me that my visual snow might have been caused by the topirimate that my first neurologist put me on originally. And now I don’t know how to feel. Because suddenly that makes sense.
Visual snow comes with other symptoms, like tinnitus, seeing trails, and persistent after images. The very first time I ever remember seeing my “double vision” or what is probably trails in this case, I was standing in my kitchen, and noticed that there was a second, slightly see through chair right next to the chair I was looking at. I did a double take, and of course there is only one chair there. I shrugged it off, thinking my eyes must be tired or something. I reread the pamphlet I got from the pharmacy, and one of the side effects is double vision. I thought it was just a normal side effect of the medication. Fast forward a few months and I have full on visual snow and tinnitus to go along with my double vision and trails.
Dr Rosenberg puts me on what he calls a fairly aggressive treatment plan. I am prescribed Venlaflaxine (Effexor) as a preventative and DHE nasal spray as a rescue medication. I will be scheduled in October for a 2nd round of Botox injections and I have a whole long list of vitamins and supplements to research and try. And I have to get my sleep normal, which is easier said than done! I would sleep my life away if I could.
I also got to try out this cute little TENS unit called a Cefaly. I am not sure how I feel about it treating my migraines, but it felt like a wonderful head massage!! It made the whole top part of my head tingle, which is a much better feeling than pain!! I kinda of wished it did something for the back of my head/neck/shoulders since that is where I get a lot of my pain too. It costs $350 and insurance doesn’t cover it. I’m not yet sure if I want to spend the money.
Although I don’t have much hope in my treatment plan, I feel like finally I am in the right hands. If anyone can figure me out, it has to be the Headache Center!