blueblueblue

Understood - the injection they gave me is 6mg so maybe too much. I am trying to avoid use if possible, very disruptive.

Wow, thanks for the suggestions. I will be looking into these and will definitely be contacting the doctor suggested; my PCP is getting me a referral to Boston Medical Center so I wonder if he is the person that she found. Normally my doctor does not refer out of her area but I stressed the importance of the cluster headache diagnosis. I had just spent ~3 weeks at a number of hospitals with literally no solution other than IV/Oral Ativan, sumitriptan injector script, no focus on CH at all, in fact I was largely ignored while being treated at one of the larger/famous hospitals in the Boston area. The need for a specialist is obvious so hopefully I will be lucky enough that the doctor and I cross paths in the near future. I am lucky enough to have enjoyed a few years CH free - I still get the 3 am wake up every morning right now in this cycle but no headache attached at the moment. I have had a lot of blood drawn in the last month - is it possible that 25(OH)D testing would be in any of that blood work? I probably had 15 blood draws over the course of the 3 weeks.

I just stumbled upon this website in search for some sort of cure for my headaches. I just had to take many weeks off work to deal with a cluster after 2 year remission. I had my first headaches very young, around 14. At the time it was pretty much just "eat some Tylenol" situation. They slowed down in my early 20's. I think I know why now but it would have been nice to know during the intense regions of the pain. Relationships and friends lost over crushing my face into pillows and floundering around; I wouldn't have wanted to be around me, not surprised in the least I became a misfit. CH was diagnosis and it was pretty obvious, unilateral left side, unreasonably painful, to the point that I'm not even sure I can feel physical pain like I should be able to since the 6+ years of chronic headaches. I had hope that after a couple years of remission some miracle cure had come out and seeing an ER would fix me during this new bout. It looks like the same landscape as it was before. I know what makes them go away, I wish everyone did and it was accessible. Oxygen doesn't seem to work for me; I have huge lungs - different story but they are gigantic. Maybe if I increased the flow it could help. Calcium channel blockers did nothing, triptans do very little other than side effects and weird injection site pain. Anyway, just introducing myself. Looking for a new neurologist in Boston area that specializes in headaches, specifically CH. I am sick of being grouped in with "migraine sufferers". I am sure that is terrible but they are clearly wholly different in their origins and mitigation. Hope everyone is doing alright, stay strong etc.