Hi All, another new member here, living in Tokyo, Japan, although I come from the US originally.

I've been suffering from cluster headaches for about 14 years (since I was 26) now, getting a cluster every 2 years or so (recently they've been more separated, thank God), with a cluster duration of 2 weeks every time (this is my 6th cluster now). Within a cluster period, I get headaches most days, sometimes twice per day, but that is becoming less common as I get older. They usually strike during the night, a couple of hours after I go to sleep, or a couple of hours before I normally wake up, or even on occasion in the early afternoon. My clusters have all started either in Oct/Nov (3 times) or Feb/Mar (3 times).

The pain is always on the left side, mainly concentrated in the upper part of my left eye socket, in my left temple,and  in my left forehead, just above the eyebrow. It's a little difficult to describe the intense pain, sometimes throbbing a bit in the veins (they swell up and my head gets warm), sometimes having sharp stabbing pains, especially around the eye. My eye also tears sometimes and it closes when the pain gets really intense. Recently I noticed that my nose runs or gets stuffed, too - I guess I never associated it to my headaches before because I have severe dust mite allergies that causes my nose to run or be stuffed up all the time anyway. Imitrex/Imigran injections will sop the headache dead in its tracks in less than a minute. The pills and nasal spray seem to help only a little.

So far it sounds like a typical cluster headache case, right? But here's the twist: My headaches last 6-16 hours. The most intense part lasts perhaps 4 hours, but pain in my temples and forehead will continue for the rest of the day. Also, the pain starts gradually, building up over the course of an hour perhaps, rather than suddenly, and it goes away even more slowly. I often will manage to get to sleep after several hours of pain, only to wake up with the same headache continuing. I'm also sensitive to light during these headaches and perhaps a little to sound. Once, but only once, I got nauseous and vomited. And I can lie down during these attacks, although not on my left side, because of the swelling, and sometimes it hurts worse on my back than on my right side. (The headaches on average seem less intense than when they started in my 20s, or perhaps I've gotten used to them, so I can endure them now without thrashing around or moaning like I used to.) Moreover, I wouldn't describe my pain as occurring in my eyeball per se, but rather just above it, and sometimes entirely in my temple and forehead. These symptoms sound more like traditional migraines.

So is this a kind of cluster headache, or a migraine/cluster hybrid? Does anyone have any experience with or knowledge of this combination of symptoms? Thanks.

(BTW, today is the 13th day of the cluster and I haven't had one since yesterday. I'm going to go to bed in an hour or so. Wish me luck!)

Malcolm

Thank you for your reply, Ginger. I don't take any medicine to prevent the headaches since they only occur every couple of years (or less - it's been 4 years since my last cluster) and last for 2 weeks. It didn't seem worth taking something all the time, and experiencing the side effects, for a benefit that may not be apparent for a long time.

And sumatriptan seems to work as an abortive. But I have a question about that: When I started using Imitrex injections in 1996, the contraindications said not to take it if you are a male over 40 years old (due to the cardiac risk). Well, now I'm 40 years old, and a little afraid to take it. (Or maybe a lot afraid.)

There is a recognized headche which has elements of both kinds of headache. It can, surely, lead to confusion in making a diagnosis.

Thanks for all your information and encouragement.

Guiseppi,
I didn't know Prednisone could be taken for CH/migraines. My mother takes it for multiple sclerosis - I can ask her about the side effects.

just-squiggles,
I had an MRI the first time I had a cluster headache. (Of course, at that time, it was just thought to be an ordinary migraine.) According to the doctors, there was nothing notable about it.

Certainly, the Imitrex (and more general triptan) warning about men over 40 taking it is because such men are at greater risk for cardiovascular disease. But I tend to worry about my health, so whenever I take such medicine, I worry for hours about having a heart attack. The pill form of Imitrex (and Maxalt, as I learned today) takes so long to work, it hardly makes it worth it given the stress involved in taking the medicine.

Only recently have the sumatriptan injections become available in Japan, so I haven't had one in about 10 years. Instead I've usually been dealing with my attacks by just waiting them out. As soon as the pain starts, I know my whole day is shot.

A year or 2 ago there was some news about research connecting migraines to strokes, so now my wife is convinced that if I can't cure my headaches, I'll have a stroke some day. For some reason, this doesn't help reduce my stress.

Sometimes headaches don't like to fall neatly into a category. The best way to get a handle on that is to keep a log: onset, how it felt and where, what made it better & worse, etc. Migraines are well known. CH much less so. There are others even rarer than CH and also devilish. Fortunately similar treatments seem to work on all. I think it's always good to have a helpful partner who is medically trained. My neuro is my angel. It took 30 years for me to find him. Just about everyone saw me as having "female hysteria syndrome" or would give me some other label more convenient to them. Keep experimenting and researching, and I wish you luck!

Hi Malcolm,

I have just been reading through this thread and it got me thinking - I wonder if what you're describing re the 6-16 hours is actually including the time of shadows?  (Having said that, 4 hours is a looooong time for a hit!  OUCH) 

Shadows are low level headaches - much like a full blown hit - in the same spot - but without the intensity of pain??  Often after a hit or the next day many of us will have a lingering pain - shadow.

I have recently started getting day time hits (normally have them during the night) and have been suprised by the build up over time before the really intense pain comes along.  During the night I will wake up and go from 0 to 100 in about 5 mins or wake with one in full swing... this build up over an hour or so is new to me - but still CH.

I also suffer from light sensitivity and sometimes sensitivity to sound too.

I hope that you can organise to see a proper headache specialist soon.  If it is CH, I would also suggest you look into getting oxygen - at a high flow rate, at least 15lpm.

Keep posting and let us know how you get on 

Wishin you all the best,

Kate

P.S. These days I also lie down during a hit - trying to stay as calm as possible - rather than thrashing around.

You may be one of the lucky ones. This may help you with your own diagnosis.
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Read these guidelines, they will help you with your double battle. The good news is CH is tended to be treated with similar drugs as migraine.
the bb