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Jefferson is a good place, been using them for a few years now. The usually have a few clinical trials going on for clusters.

I do have the DHE injections but have yet to use one as I was told they are an abortive and not as much of a preventative. I do have another infusion scheduled for the end or March but do not think I am going to keep it. things are not really that bad at the moment, I am only getting maybe 7 hits a week and not every day so in my book that's a win. I might just try to bust now and see if that works any better for me now that the clusters are kind of held down a little.

Wonderful news about the cessation!!! We've discussed splitting your injections (if they're 6mg) at another thread. Something to keep in mind at your Jefferson appointment is that there is a CH "lookalike" condition, hemicrania continua [HC], that is all-day head pain with occasional "exacerbations" into more severe pain. It doesn't seem highly likely that you have this (because I don't sense that your headaches are continuous), but maybe it's worth discussing, since there is actually a treatment for HC in taking the medication Indomethacin. HC is generally not fully responsive to oxygen or triptans. Some people have suggested that Indomethacin can also sometimes work for CH. It's a difficult medication for some people because the gastrointestinal side effects can be challenging. Of course, you are much better off if less harsh approaches, such as the D3 regimen, work for you.

Sorry for the delay, I didn't get the notifications I expected. I'll figure it out. Anywho, the 10-20 minutes is the peak of the attack, the portion of absolute misery that redefined my understanding of pain. All of my attacks have happened in the afternoon/evening, and I had the shadow on and off for several hours before things escalated into an attack. Looking back through my notes, I'd say there's shadow with more modest pain levels for a few hours, then the climax of the attack lasts 20-30 minutes. I have treated them with sumatriptan pills. Obviously that's too slow for these attacks, but I didn't really know what I was doing at that point and hoped it would at least quell additional attacks for some period of time. I have since met with my neurologist who agreed they were cluster headaches, and I got sumatriptan auto-injectors to help going forward. We also discussed the possibility of trying emgality, but haven't started that process yet. In the meantime, I also went all in on the anti-inflammatory regimen. My hydroxy 25 was already 63 ng/mL because I've been taking D3 for a while, but I added the co-factors and loaded up the D3 for a bit and quickly crossed 80 ng/mL. Since I hit that level, I haven't had a single cluster. That's only 11 days, but the prior 4 clusters were getting much closer together in timing, so that feels like a potential win. I have an appointment with Jefferson Headache Center next week (was already on the books for migraines), and I'll consider getting oxygen and see what they think about the whole situation.

hi @Amholla3 , very sad to hear you're suffering again . I'm chronic and i suffer with constant neck problems , shoulder pain and rhomboid pain on the right side (same side as pain from CH) . i find brufen helps when i have a lot of pain but thats temporary , massages help a little , i want to start exercise for back and posture and see if that will help , it causes a lump on the right side of my neck.