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ClusterBusters

MFuller

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  1. Hi everyone, I guess I will start with a little background info...I’m a female that was diagnosed with CH as a teenager and am now in my mid 30s. I went through my first cycle without diagnosis, and it was pretty textbook. Excruciating/vice grip/ice pick to the eye headaches on the right side, grow in intensity over 45 minutes almost exactly, come at similar times of the day, right eye tears, nasal passage becomes swollen and drips (I always thought it was blood coming out). It starts with one headache a week which progresses to every other day to everyday and finally multiple headaches daily that increasingly get worse. After a couple months they disappear. That first cycle was pretty scary. We considered severe allergies, maybe there was mold in the classroom I kept getting headaches in (teacher sure didn’t understand), migraines, brain tumor, but they magically went away. Next year they come back, and my parents take me to a neurologist. Clean MRI. Diagnosed with CH. Prednisone broke the cycle. Hooray! They come back the next year, but it takes more prednisone this time and then an IV of some sort. Each time they come back, more steroids are required as well as imitrex shots. When I started having children, I suddenly went 3 years in between cycles instead of 12-18 months. Not sure if there is a hormonal aspect at play or if it was the Verapamil that spread the cycles apart. Anyways, the freaking things are back. I’ve been through 2 rounds of prednisone. The first round kept them away for almost 2 weeks after the taper stopped. Not so lucky the second round. They came back the last day of my taper. After reading several posts, I see that the Verapamil should have been prescribed at the same time. I’m taking it now, but the headaches are still coming daily. I have added 10 mg melatonin, got a script for oxygen (waiting for supply company), and am ready to try the vitamin regimen. I have also had success with doing pushups to abort individual headaches?! NEVER would I have thought that would work until I read it here at clusterbusters! Unfortunately it didn’t work this last time around. I tried the 5 hour energy drink when the pushups didnt work, but it didn’t help...maybe I started it too late? The ongoing problem now is a very tight neck and what feels like a pinched nerve in my shoulder on the same side as my headaches. It almost feels like a painful numbing feeling that radiates up my neck and into my temple/behind the eye. It’s like the beginning of a cluster, but it just stays there. I am wondering if a chiropractor or massage would help, but I’m also terrified that it could make it worse! Any advice on what to do? Sorry for the long post! I just thought more info might help with advice. Also, on a side note. I have never touched a cigarette in my life and rarely drink. I had never had a drink before my first cycle, and I am female. I feel like an outsider!! Are any other women out there with similar experiences? Thank you all! Meghan
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