Posted 3/26/2016 10:19 PM (GMT -7)
I understand the travel, and having to find an appointment that fits your schedule. I travel from upstate NY, its about a 5 hour drive each way for me, and its exhausting. I've tried 3 hotels in the area, found one that I like so far, though its outside the city, by the airport actually. But it has a full kitchen, which is nice. But there are some nice things to do in Philadelphia.
I personally was hospitalized to try and break my migraine cycle, and it was what changed my life. I was given DHE to break the cycle, and that is actually also the medication I use during a bad migraine. Compazine is the middle ground as needed medication I use for like middle migraine attacks. Both were medications I had never heard of before, I had always heard of Imitrex for migraine attacks, and I had assumed if I had migraines I would get that. Nope I get DHE and Compazine, and I was give both in the hospital and they both work wonders for me. I was in the hospital for 2 and half days, they told me to expect 5 days.
As for preventive medications, I'm on Topamax. I was on Nortriptyline right out of the hospital, but it was not working for me. So I was switched to Topamax, and other that two break throughs where we just upped my dose, I've been doing well with it. I'm also on a couple supplements to help as well. I now just go to JHC about every 6 months just to check in and make sure I continue to do well, though I am just told I can just push my appointment farther away if I continue to do well. I'm actually scheduled to go in April. I have a back up plan in place incase I need it, a second medication for my Primary doctor where I live to add that JHC suggested, I have it written down, with their suggested dose for me.
I found they are very open to working with my local doctor, because of my distance. At least my Nurse Practitioner is, which is nice. Sometimes because the place is big, there are a lot of people. It can feel like you are lost in the system, but at the same time, they are doing the best for you. I've been getting really good care there, they have been doing a good job of working with my local doctor to help me. My only issue with them so far has been a little bit of issues with getting in contact when needing them, and I only have like twice so it hasn't been a big deal. But it can be a bit of a pain. You call and leave a message and they call back. So don't expect a answer right away. That has been my only issue with them all along.
One thing I found was that the first about 6 months after I started, I was better but not perfect. I had less migraines (I was having daily migraines, and then I wasn't, but still having them weekly) but it was very up and down till they found a good medication for me. But after time, and things settling, it got a lot better. Just keep hanging in there, and know you aren't alone in this.