Hi, I'm Tegan. Until about thirty minutes ago, I'd never even heard of cluster headaches, but I'm fairly certain I'm a sufferer.

I'm 24 (I live in Dallas, TX), and I've suffered from what I thought were migraines since I was two, which was absolutely terrifying for my parents. They took me in for CATscans, all sorts of medical tests, blood work, allergen tests, you name it, they subjected me to it.

When no tumors or allergens turned up, they tested me for food triggers, which again turned up nothing, and eventually sent me to a counselor who was supposed to help me manage my stress level to reduce the frequency of migraines (in vain), and a new-age healer who was supposed to teach me to control my blood flow and balance my chi to "take control of my own body". All of this was before I even turned ten.

When nothing worked (except some pain medication designed to literally knock me out until an episode passed), I pretty much just resigned myself to live with them.

It actually wasn't until earlier this evening (I was in the downswing of an episode) that I googled migraines, and clicked a link to cluster headaches...and I saw this picture of a man with a tiny demon on his head, stabbing the man's eye. And my immediate thought was, "oh my god, that is EXACTLY what my migraines feel like!"

Mine probably aren't as debilitating as some; the intensity is severe, but my parents' sympathy for my suffering waned considerably as I got older, so I learned to suffer through them, since if I didn't, I generally got accused of exaggerating to get attention.

I get nauseated on occasion, when the pain is too intense, and I generally need to lie down in a dark, cool, quiet place, and press my fist against my eye socket. I keep a bottle of benadryl and excedrin by my bed so that I can medicate and knock myself out if I need to.

I'm hesitant to make firm plans with anyone, because I never know when I'm going to wake up with a migraine. And the only cure for them is to knock myself out for a few hours.

Luckily, my boss is really understanding - she suffers from migraines herself, and completely understands if I have to call in sick because of one.

I can't stand to have people around me when I'm suffering one - even my boyfriend is pretty much banished, because I feel so awful and helpless. All I can do is curl into the fetal position and cry and rock back and forth until I finally fall asleep.

And I absolutely hate it when people who suffer occasional headaches claim to know what it feels like, because I've had major surgeries that didn't hurt as much, and when I'm suffering one, I feel like I would give ANYTHING just to make it go away.

I'm just really, really glad to finally know what they are.

Welcome, Tegan. Headaches can be such a pain...meant literally of course. And sometimes one form mimics another with correlative symptoms. Some of what you describe sounds typical of a CH, but it could also apply to ocular migraines. I know you have been around the block once or twice but...do you have a neuro who is knowledgable about CHs and who could help you sort out exactly what is going on here and what you can do?  There are preventatives and abortives available for CHs from which you might profit. Tell us a bit more about yourself and what the doctors have given you and in what doses. Maybe we can share some of our experiences by relating to your own past. In the meantime, good luck and God bless. lance

I did a bit of research on Ocular migraines, but mine aren't accompanied by any sort of visual impairment, which I've read is fairly typical of Ocular migraines.

I haven't actually been medicated specifically for migraines since I was a child. I called my mom, and she said that I was prescribed codeine for them when I was younger, but because it always made me fall asleep (and, being forced to sleep, I missed a lot of school), and codeine being highly addictive, it wasn't considered appropriate for a long-term treatment for a child who suffered from migraines several days a week.

I also found it interesting, in my scouring the net for symptoms and causes of cluster headaches, that histamines seem to be a trigger for them. I take benadryl nightly, since I've found that when I do, the chances of waking up with a headache decreases. And, since benadryl is an anti-histamine, if histamines are indeed a trigger, it makes total sense.

Some background: I was diagnosed with migraines when I was two, when my parents were going through a divorce. I don't remember all the treatments or doctors that I saw because I was so young, but my mom tells me that they took me to several different specialists, who diagnosed me with stress-induced migraines, and berated my parents because they said there was no way a child so young should have enough stress to cause migraines.

But even as a child, it didn't make sense to me that my migraines were only caused by stress, because often they struck with absolutely no warning, in times or places when I was perfectly happy and not stressed in the least, and within minutes I'd be crying and screaming in agony.

I went to a daycare center as a child, and I'd often find myself laid out with a migraine while I was there, so often that the teachers there made up a desk with a blanket over top of it to block out the light, where I could crawl under and sleep until my mom came to get me. 

I'm considering going to see a headache specialist to see if I do, indeed, have cluster headaches, and, if so, what my treatment options are. As it is, the only thing I can do now is medicate with excedrin and benadryl, and wait for it to pass.

Wow, caffeine helps cluster headache sufferers? That's exactly why I take Excedrin - if it doesn't have caffeine, it has zero effect on my headaches.

Sounds like you intend to stay with us!---so, PLease...

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