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Found 6 results

  1. I was diagnosed with CH this month. I kept thinking I had sinus problems because of the stuffy nose and pain behind my eye. Looking back over the years, I now realize that I may have been experiencing CH for years, but now, at age 62 it is much worse! They started when I got home from hiking to the top of Mt Kilimanjaro (19300 ft). My neurologist has prescribed low dose of Verapamil and Zomig nasal spray (which I can't take until my MRI has been read). She said getting Oxygen in nearly impossible. As the rest of you, I have found that over-the-counter pain meds have NO impact at all,
  2. According to the FDA there is a shortage (unavailability, really) of verapamil ER in the U.S. The manufacturer stopped making it recently, I think in February 2019. It looks like it is not available in any strength. This has been a miracle drug for me for cluster and I've run out and am now having a bad time. I'm going to have to try replacing it with regular verapamil. Does anyone know if there is a way to ask FDA to get verapamil ER made by another company, maybe as an orphan drug?
  3. I have been quietly lurking on these forums for over 20 years now. I haven't had to post because I usually found the answers to everything I needed. My CH occur every 24 months for 2-4 weeks since 1997. It took many misdiagnoses, incorrect medications, MRI, IV anti-inflammatory drips and trips to emerg before someone finally mentioned Cluster Headache. I consider myself a veteran now - when the beast appears, I get my Imitrex, Verapamil, Oxygen and lorazapam meds handy, inform my employer and let my supportive family know I am fighting the beast again for awhile and it takes everything ou
  4. Hello Clusterbusters! Comforted/distraught to be among you. Here is a brief history of my life with clusters so far, leading up to my diagnosis and including the treatment I am currently undergoing. Perhaps it will provide some succor to other suffers, as many of your stories have for me. I would also appreciate any advice regarding my current and future hopes for coping and treatment. I was recently diagnosed with CH, but have been suffering from attacks for at least four years. (For demographic interest, I'm a 42-year-old white male.) The first CH cycle was the worst, both because the
  5. Good Morning. I am a long time CH sufferer but consider myself lucky. I experience Clusters every 2 years for about 3 weeks. The time period shifts on my usually due to stress, I can only assume. I have been to a neurologist and have finally convinced my physician to prescribe Oxygen. I successfully use Oxygen and Immitrex to abort most of my clusters. Here is my question - 4 years ago, i used Verapamil (240mg - two pills a day) to successfully prevent my CH from occurring in the summer. But, two days after I weaned myself off of them (during Christmas break - a low stress time for me a
  6. Greetings fellow clusterheads. Very grateful for websites and forums like these. Around the age of 12 I started getting the most brutal headaches I had ever endured. At the time we had no idea what they were. As most of you went through as well, I had all the tests, scans, sinus meds, the works. Eventually, on my own after the age of 18, I figured out what they were, and discovered that there was no cure lol. What a kick in the balls that was. Anyway, I'm now 35, in the middle of a cycle, after going 4 years since my last one. The older I get and the more I progress career-wise, t
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