Hi!  I'm Michael, 34 year old Los Angeles resident.

I've had cluster headaches since I was 16, but was only diagnosed last July.

When I started getting them back in High School, I went to the Dr and after tests and questions and everything else, the Dr concluded that it was migraines and gave me imatrex pills.  The pills did nothing, but I was on the highschool football team, and also played club Ice Hockey (yes Ice Hockey in Los Angeles) and the culture for both of those was, you just dealt with pain, so that's what I did.  After 2 years of dealing with it (I had 4 or 5 cycles a year during high school) I sort of got used to it (as much as one can get used to what we deal with) and while I mentioned my headaches over the years to various doctors I saw, I referred to them as migraines, having no idea that cluster headaches even existed, and lived with them my entire adult life. 

Sometime around age 21, they started to get less frequent but more regular.  My cycles came once or twice a year, often in May or October or both (I understand this is normal, with the change of the seasons) and I'd get my headaches at either 2-3pm, 4-5am, or both (the 4-5am ones would wake me up from sleep, as is also normal.)  Luckily, I DJ for a living, so my work hours are typically from 10pm to 2am, so my headaches don't really effect my work.  Loud noise is not a trigger for me, so I'm lucky there as well.

So basically this was my cycle for the past 13 years.  About 6 years ago I changed doctors as I'd moved to a different part of Los Angeles, specifically culver city.  I mentioned the headaches to the new doctor in passing, and but I was just there for a general checkup, and to meet and get comfortable with a new doctor, so we didn't get terribly deep.  I didn't make a big deal out of the headaches since it was just something I'd been living with.  Again, I didn't know about cluster headaches, and I thought they were migraines.

I also have an incredibly high tolerance for pain.  I've read here that some other cluster sufferers have a similarly high pain threshold, however others don't, so I'm not sure whether or not it's born out of dealing with clusters for so long, or if my tolerance for pain existed and has helped me deal with the clusters as I have.  I definitely have all the symptoms of clusters, when I'm in the throes of one, especially the ones that wake me up from sleep, I get up, walk around the house, clench my fists, put pressure on my right eye where the pain always is, etc., however, I've never felt depressed or suicidal or thought I couldn't go on, I just endure, knowing that one of the amazing things about the human body is, it has a difficult time remembering pain...once the headache is gone, it's gone, until it comes back anyway.

At any rate, I had a physical last July, and I had just had a cycle end about a week before the appointment, so I mentioned it again to the doctor, in a bit more detail.  She asked what I'd taken for it in the past and I noted that the only thing I'd ever taken was imatrex pills.  She gave me a nasal spray and told me to see if that helped, but she also mentioned that at the Culver City Kaiser, there was a headache specialist, so she set me up an appointment with him as well.  Randomly, I had a headache the next day, even though I thought my cycle was over, it wasn't bad, maybe a 6, but I tried the nasal spray, and of course, no help at all.

The Specialists name is Kenneth Nudelman (apt name for a headache specialist...Noodle Man) and before my appointment, he had me fill out a questionnaire.  Basically, that questionnaire told him everything he needed to know, and within 1 minute of walking into the room, he told me I had clusters, and began telling me all my symptoms exactly without me having to tell him.

He told me that since I wasn't in cycle (it was August before I actually saw him, and I was definitely out of cycle) there wasn't a ton he could do for me right away, but the moment I felt a shadow, I should contact him and we'd begin to try various things and see what worked for me.

I've had a couple shadows today and yesterday, so I'm gonna give him a call first thing tomorrow and see what he says and go from there.  I'm encouraged by the fact that he knew what it was right away, so we'll see how things go from here.

I also happen to have another DJ friend who is a cluster sufferer, and he's explained to me that Oxygen helps him a great deal, but he's tried everything else and the only thing that keeps his cycles short or at bay is discussed more indepth at clusterbusters.com (I'm not sure how much detail you guys go into about that on this site so I'll keep the specifics vague.

At any rate, that's my story, so we'll see where it goes from here.  Now that I know what's going on, my feelings are mixed.  I'm encouraged by the fact that what I'm dealing with is a specific thing, and not just migraines, because the pain definitely seemed extreme for something as common as migraines...however reading what other people are going through, it's pretty scary to think about.  I guess I just need to keep it in perspective, I've lived with it this long, and now that I have an idea about what to do about it, it can only get better!

Hi, and welcome. Your story is fairly typical of so many sufferers here. I'm glad you have a diagnosis but please be aware doctors, even neuros, seem to have little knowledge of what actually works for us. The list is quite long and includes abortives, intervening meds, and long term preventatives. It's also quite varied. When we hear "I've tried everything" we usually take that to mean "I've tried everything that a doctor prescribes for migraines" which are usually no help to us at all. Read here and ask any questions. God bless. lance

Glad you found us Mike, stick around and soak up some real life CH knowledge, knowledge is the most effective tool against the beast. Welcome home.

Joe