Hello, My name is Kathleen. I found this group back in 2007 when I was diagnosed with clusters. I have since lost track of many things thanks to the blasted ha's but have found my way back once more. This seems to be the one place I know I can come and read posts that are similar to circumstances I find myself in and even more importantly find wonderful posts from some of you who are pf and living life again  My story isn't as optimistic as some but I hold out hope that one day it will be better. Well, better came about 1230 this morning and lasted for 8 hours  I have lost so much ... my family, my job, the ability to go out ... I have been chronic since 2008 and they just dont let up. At least 1/2 of my time is spent with the monster to one degree or another and twice a year i spend 6-8 weeks with constant, vicious hits. Oxygen was the first thing I tried and it had no affect at all. Actually, I have been on most meds that are commonly used but the only thing I can say is that best/worst thing was lithium which made me a bit tired but would cause me to sleep for 18 hours at a time. At least I got some sleep I no longer take the lithium or the verapamil and all pain meds the dr had me on, which only made me sick, I quit taking; it didn't help anyway. I am not one to post much, and the reason I am today is bc I have been hit constantly since the last of April with only a day last week and a few hours here and there pf. As many of you know that means no sleep. The worst pain is that my oldest dau called me and tried not show the pain but I guess she could hear it in my voice and she hung up on me. She told me the next day that I was "out of it" and I said, "no, I was totally IN it wishing I were out of it". I don't like hospitals bc there isnt much they can do for you, but sometimes it gets so bad, I am so sick, I break down and have to go. I have one sweet dau, who hates to take me but does, bless her heart and she sits with me for a few hours and brings me home, sick tummy gone, and head pain still going. The other two kids don't even know I have been, they don't know what their sister, a young 21 yr old, gives up and does, bc they are unwilling to help. The first time I came to this site I remember a post from a 17 yr old young lady whose father suffered. What an amazing person with so much compassion not only for her own family but for others as well. I also made a friend who had many words of encouragement I will never forget. Thank you Joe! You are all so wonderful and courageous and I thank you for letting me share a part of you with me and a part of me with you.

The diagnosing/treating neurologist I was seeing was very good but has retired. I am now under the care of my primary doctor as no other neurologist has been willing to take me on stating that they are unable to help me. The only neurologist willing to see me said there is no such thing as cluster ha's and need to be placed in a hospital and removed from all medication or move to california and let one of the clinics there treat me. Needless to say I never entered his place of business again. I see 3 doctors, all agree they are clusters accompanied by migraines which I have had for 17 yrs. Sometimes the clusters trigger the migraines, what a thrill that ride is, lol. There is no denying the difference between them. I remain on topamax, maxalt fiorinal and neurotin. I've read many posts about the vitamin regime ppl are taking and am very interested and hopeful that it may be helpful. I love gardening and started one this year but am having a bit of trouble keeping up now that it is getting warmer. I am enjoying some strawberries early in the a.m. tho

Thank you Maz, I have told her of the sight but will tell her you are waiting for her to enlist haha. In answer to the oxygen question, my dr prescribed 25 litres with non rebreather mask which is what I was on. He was very insistent and determined to get medicare to pay for it and after a few letters, low and behold, they came through and I had my oxygen delivered. Unfortunately, it didn't stop the clusters or slow them up any.  Water and ice are two of my best friends

I have had a number of MRI's and CAT's and it was determined by my neurologist that they were indeed clusters. I was seeing a pain management dr at the time and was being treated for migraines and had been for a number of years and they kept getting worse and worse until he finally sent me to the neurologist. Tweaking of lithium and verapamil helped to lessen the severity for a while. I take one day at a time and sometimes its one breathe at a time. I took the time to look into the list you posted. Thank you.