M-Philly

I got an appointment with Dr. Marmura at the Jefferson Headache Center!!

Hi the doctor recommendation at Jefferson would be great. I tried getting an appointment with their headache specialists but they haven't gotten back to me because I'm not having "12 or more headaches a month". I don't think the people who do the scheduling are informed about CH. I know William Young is involved with clusterbusters from the list, I'm just trying to figure out how to get an appointment scheduled.

My employer provides short-term disability insurance through a company called The Hartford. I haven't heard of a lot of employers offering this. I work for a large corporate ad agency, that isn't what I want to be doing and I don't always feel great about working there, but I get benefits like that. When I had my first cycle in 2020 I was lucky enough to work for a small agency that was very understanding. I kept them in the loop while I was getting diagnosed.

Hello Fun Times! I wrote this up for my own sanity but I can share this. It's probably way too long, but please let me know if it helps:

Hello! Hello! It's very nice to find a place like this. I was first diagnosed with cluster headache in 2020 when I was 32, although I have had a similar but very short attack when I was in my mid-20s, and had one-off very similar attacks in my teens. My second full cycle ever ended last October right after I recovered from COVID. After going through hell with finding a new neuro, trying to get my hands on medication, and getting short-term disability approved, I wanted to find what advocacy groups there were. I look forward to getting to know all of you.