Visit to the Johns Hopkins Headache Center

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.

The migraine queen finally has a crown!
The migraine queen finally has a crown!

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!

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5 thoughts on “Visit to the Johns Hopkins Headache Center

  1. I have used the Cefaly 3xs so far.. One with really bad dizziness that lasted for three days. But the 2nd two were lovely. either took away or lessened my migraines. Botox is the BEST for the neck and shoulder migraine activators.. I can’t be without it.. I’m scheduled every 12 weeks. And quick note on the Cefaly.. You can pose it to your insurance company to cover.. DUrable medical equipment.. It is too early for most of them too, but you can argue your way into it.. there is a 50/50 chance of recovering your cash. Usually steps you had to go through first.. but to me worth a try for $350.

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    1. I feel like the Cefaly would have helped me with the migraine from hell I had last night/this morning. I still haven’t purchased mine yet but as soon as I get the money! I’ll talk with my insurance as well, maybe I can be persuasive enough to get them to cover it lol. I can’t wait for my 2nd round of Botox (hopefully soon!). And this time I will get the proper amount, and maybe they’ll inject into my neck and shoulders too, since that is where I have a lot of pain as well. Thank you so much for the advice!

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      1. Are you not getting the full meal deal? Should be close to 31-33 injections. from several in the forehead to around the ears(temple), back of the head, down the neck and shoulders.

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      2. I only had 11 injections the last time I had it, because it was my first time ever getting Botox. My neurologist only gave me a small dose because he wanted to make sure that I didn’t have any sort of bad reaction to it. This time I tolerated it well so this time I should be able to get the full dose in all the injection sites.

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      3. You will be so excited when you get the neck and shoulder ones! I never knew the muscles in my shoulder/neck area were capable of relaxing! Huge difference for me! I have done Botox regularly for about 3 years and it’s made a huge difference for not of the the frequency, but the severity of my migraines. Until I was in a car accident a few months ago, I hadn’t had a debilitating migraine that sent my crying to a dark room, in months. But the car accident has stirred things up again. As we moved forward with the Botox, we adjusted amounts for where my flair or pain was.. It has been really great for me.

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