Hi, I'm Dit and I'm 55. I'm here to learn, share and offer my experiences and support.
I had my first cluster episode in spring 2003. Before it really started, I woke up one day with a sudden rash all over my body (no itch). That went away over the next couple of days. Then, within a weeks time, all of my joints were suddenly flaring up. I remember that especially my hands and feet were sore. So I went to my GP, who did some bloodwork on reumatism, but he ruled that out. By the time the results were there, things were back to normal. I was puzzled about these unfamiliar conditions in such a short time frame, but my GP said he saw no connection and considered them to be 'freak phenomena'.
Then the Monster came out. He stayed with me for 6 weeks and was just going in remission when I was finally properly diagnosed. I had no clue about CH and thought they were migraine attacks, so I got Imigran tablets that didn't do much for me. The pain would wake me up every night around 2 AM and keep me busy for a few hours.
I had to wait 5 weeks before I could see a neurologist, and he told me I had most likely suffered from CH, given all my symptoms (timing, location and duration of the pain, droopy eyelid, nasal congestion, urge to move, what have you). So I read up on it and it all made sense, even the flare and the joint pain, which may have been connected with histamine release. I dreaded the next spring, but the monster stayed away.
Guess I'm one of the lucky few because the Monster stayed away all those years. Until this spring that is. He returned early April and he's got the same agenda. He visits me every night around 2 AM, but this time I have Sumatriptan injections from my current GP. They do the trick within 5 minutes. The only difference is that I see no signs of remission this time and I'm past my 6 weeks now. Instead, I get more attacks, once ore twice during the day. But when I'm awake I can usually fight them off with coffee, energy drink, movement and distraction. I know there isn't an unlimited supply of triptans so I keep those for the night attacks, they are the worst.
This coming week, I have another appointment with my GP to discuss a more structural approach. I've seen my chiropractor twice. He said my atlas (C2) was mis-aligned but so far his corrections have not had any effect on my condition. I'm looking into acupunctural treatment as well. In fact I'm looking into anything that can help me to fight back the Monster. I'm interested in your experiences.