nbonning

Thanks for your helpful comments! I agree he has NOT gotten adequate treatment, and we'll pursue one of the doctors on the list!

Thanks for your thoughtful responses. I'll pass this along to my brother. A little info...He was diagnosed with CH by various docs over the years. He has a reputable pain specialist who can't find any solution, other than large doses of oxycodone and Imitrex which have worked well in the past, but he won't increase the dosage any more. The list of other meds and therapies that my brother has tried is extensive. The only thing he has not been able to try is LSD, as it's not accessible. He owns an oxygen machine, but no longer getting any relief from it. He'd like to get off the narcotics if and when another solution is available. Meanwhile, however, he needs a doc who will prescribe. He has used energy drinks, coffee, and melatonin, but not the vitamin D3 regimen. (I'll pass that on to him.) I found a non-narcotic drug called Prialt that is administered through the spine with an implant. Does anyone have experience with this for CH? Any experience with surgeries? Any emergency room experience getting relief when nothing else works? Thanks!

I am posting this for my brother, who is severely disabled by CH and does not have internet access: I need urgent help finding the right doctor to treat my cluster headaches. Here is my situation: I’ve suffered from chronic cluster headaches for 16 or 17 years. The longest I’ve gone without a cluster headache is 10 days. Over the years, I’ve experimented with dozens of meds and oxygen. But the only two things that have been found to work are narcotic painkillers and the non-narcotic Sumitriptan. Both of which I’ve been taking for years. For several years my daily prescription of oxycodone has been 300 mg/day, which used to be enough. But for the last few years it has barely been adequate to deal with the normal fluctuations in my headache phases (obviously my body has built up a tolerance to that dosage level). My Rx for Sumitriptan is 9 tablets per month; my doctor says if a take more than two of them in a week, it will cause a heart attack. Six weeks ago, I entered a severe headache phase that has forced me to use as many as six Sumitriptans a week (which of course I don’t dare tell my doctor). My doctor tells me he is frightened of the new legal climate surrounding the prescription of narcotic painkillers, and refuses to increase either of my medications. I will soon run out of my small backlog of Sumitriptan and I know I cannot survive my cluster headaches without some means of treating them. So, I am looking for a doctor who can do two things: 1) increase my prescription of narcotic painkillers at least long enough to get me to a better solution, and 2) is familiar with the latest solutions for cluster headaches. For example, I would like to know if a Prialt implant might help me. Can anyone of you fellow CH sufferers help me? I live north of Seattle, Washington, so I’m hoping to find a doctor in the greater Seattle area. This is my last shot. Thanks.