New to the site, new to the beast...

When I was 6 years old, I began to suffer from daily, debilitating migraines. I went to school everyday (I despised my peers whenever they would leave school because they had a 'terrible headache'). I accepted the pain, which in turn allowed me to live my life normally. They miraculously stopped when I turned 15. I thought my suffering was finally over!

In August I turned 24. Before my birthday, I still had the occasional migraine, which I would simply kill with my Maxalt.
Late August the attacks came back, albeit slowly. When September came, the attacks began to increase exponentially. By October, I was having severe migraines every day - My supposed freedom from when I was 15 had ended. To this day, I still have around 25 migraines a month.

I realize that this forum isn't dedicated to migraines, so here it goes. Mid-November, I went to see the movie Flight. Fifteen minutes into the movie, a single tear fell from my right eye - this single moment was the start to my new friend from hell. Soon after I wiped the tear, my right nostril clogged, my eyelid swelled like a water balloon and drooped to the point I could barely see out of my eye, and the tears were flowing like Niagara Falls. A demon had entered my eye, and was attempting to rip it apart. I sat through the movie squeezing the life out of my eye, attempting to counteract whatever was ripping my eye out. The pain was excruciating. I was bawling like a baby for two hours and 45 minutes. I already new of clusters, and the moment it hit I prayed to God (despite being an Atheist!) that the pain I was experiencing was not the beast. It was pointless. I already new that I had just stepped into hell.

I am still suffering to this day. I am seeing a great Neurologist (headache specialist), and her treatments have decreased the pain tremendously...but of course the beast is still there. Oh, and after any one of my cluster attacks end (On average, I get 4 a day), a migraine, plus constant shadows, takes it's place. The shadows feel like someone is taking a scalpel and slicing my eye clockwise.

Initially I got panic attacks after each cluster, fearing when the next would come. I was severely depressed. I thought back to when I was a child, when I accepted that I was just going to suffer from daily migraines. Mid-December, I accepted that I am just one of the chosen, and I embraced my condition. I knew that I was going to suffer, so why worry about it? The beast is now an inevitable part of my life. This realization stopped the panic attacks and depression - I have come to appreciate life more between attacks.

Reading peoples stories on this site and realizing that I'm not alone in this struggle has helped tremendously...Thank you all for helping others and sharing your experiences. I know many of you have suffered for years...I am a "novice" and am 2 months into my first cycle, which is still in full force.

I am writing this at 5 in the morning after being woken by a demon. Luckily, after it just ended, a lovely migraine has taken its place. This is my continuous story.

Anyway, I'm new to the boards, and just wanted to say hello to my fellow cluster-heads!

Following on Lance's suggetion, would be useful to print out this latest evaluation of treatments for Cluster and use as a discussion tool with your doc--to see if there are any options which have not been considered.

High flow oxygen, lidocaine 5% nasal spray, and verapamil 120 mg x4 (480 mg) a day. That dose is being increased. I'm extremely sensitive to medications. One dose of prednisone made me sleep for a week (I don't remember anything that week) and I can't drink caffeine (and I tried it and it didn't work anyway!). Also, I got the occipital nerve block injections recently...which is for migraines, but she indicated that she has had some success with it for her CH patients. She has treated plenty of cluster patients. I trust her (I switched immediately to her after another Neurologist who put me on oxygen, 4 L/m for 3-4 minutes, and wouldn't increased the dose when I said that would be completely ineffective). I trust her and believe she knows what she is doing. And yes, I have been officially diagnosed by two neurologists, only one of which I trust. But thank you for your support.

Oh, and I'm taking the vitamin regiment. Hasn't seemed to help. Since the Verapamil, I haven't gotten any headbanging screamers, which I am thankful for. However, I can still tell whether or not a cluster I am having (while on the Verapamil) would have been a headbanger, why me[?]. And I'm thankful that the medication is stopping that pain.

I think the worst part about it is the lack of understanding. People don't understand how horrible my experience is, because it is labeled as a "headache." Only a few people in my life understand how horrible this is for me. The rest, well, as I'm sure you all know, just say that they understand, as they've had bad headaches too. Just take some Tylenol!

One thing is for sure. I'm complaining a lot less about petty, insignificant things, which I had done a lot before getting the clusters. And that is a very good thing!

Hi slpierce! Yes its very comforting knowing that there are other poor souls suffering the same pain. Nobody and I do mean NOBODY can truly relate to our suffering if they don't share the same ailment. Yeah, I have encountered many "Migraine Sufferers" who attempt to compare their HA's to CH's. I always respond "man I could only wish I ONLY had migraines". Don't get me wrong by thinking I'm being arrogant towards these people who attempt to relate. Seeing how you used to suffer from migraines, you can obviously protest this attempt to relate.

Perhaps its the onslaught of ignorance that has rendered me intolerant towards the typical "oh I get migraines TOO". I suppose I have been conditioned over the years by comments much like the one I mentioned. I'm deeply sorry you have graduated to a much more unforgiving demon. I understand that many people who suffer from migraines honestly feel like they are the apex of pain, but they are so blessed to be wrong.

I could NEVER wish these upon anyone. I'm glad you found us and completely understand the relief you were overwhelmed by upon finding the site.

Since I also get migraines I've an insight into the impact of both, especially when I was getting about 10 of them a week early last year, with only a few hours between one migraine and the next. There is simply no comparison in the pain levels between CH and a migraine. However the impact of them on your life is in many ways comparable. But it is a different story if you compare getting a couple of migraines a month with CH.

So I understand totally why migrainers say that they too get migraines.