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

Hello Malcolm and Welcome!

There are a few here to do suffer from both Migraines and CH so you are not alone there. 

Are you on any kind of daily prevent for the CH ?
Have you Tried O2(oxygen) to kill a CH hit ?

Make sure you read all you can here and speak with your doctor about the differences in your Headaches and anything you may learn here. 

Much Luck and PF wishes to you.

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.)

Don't be afreaid of the over 40 stuff, Bob Johnsons posted information on that a while ago, dispelling a lot of the earlier worries. I'm 50 and still use imitrex, and there's older then me using it!

A suggestion to take to your doc. I do a 2 week prednisone taper when I start a cycle, mine go from 3 months to a longest of 8 months. I use lithium as my prevent, but it takes up to 10 days to really become effective. Prednisone, at doses as low as 30 mg a day, provides 100% relief to me. That's why I do the 2 week pred taper, to let me hide out while my lithium takes effect. Prednisone is a rather powerful medication with a lot of nasty potential side effects if taken for long periods of time. As short as your cycles  are, it would seem an ideal use of a prednisone dosing to see if it'll mask the whole cycle for you. I go from a start of 80 mg. a day, tapering down 5-10 mg a day until I'm back to zero.

Joe

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

Hello Malcom,
     I get both CH and migraine and have had a few occur at the same time.I have had a CH trigger a migraine. 6-16 hrs is unheard of for CH so you may have both CH and migraine.
    As far as intesity,a migraine hurts so bad you can't move,CH hurts so bad you can't sit still,ice cream ha.
I assume you've had a MRI/MRA??
    I believe the imitrex warning is because men are
more prone to heart issues than women (I don't
know for sure,I can't take triptans)
  I don't know what healthcare in Japan is like but in
the US you will probably have trouble getting a Doc to
give a dual diagnoses,don't give up!

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.

Malcolm have your wife log in here there are things she can do to help you and to help herself feel less helpless when you are battling the CH beast.  This may reduce the stress on you both.  CH doesn't affect just the sufferer it affects all those around you as well.

Look into the pred tapper it has worked for a few and may turn out to be your magic bullet.  Most of all if you are worried about taking Imitrex look into getting O2 to abort your headaches. 

PF Vibes to you.

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!

malcolm wrote on Dec 4^th, 2010 at 6:13am:

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.

There is no need to do that! Having been through that myself I know just how much it impacts you.

Do check out oxygen. With a high flow rate (25lpm for me) and a non-rebreather mask I can be pain free in 6-8 minutes and a few minutes after that be back doing whatever I was doing before the CH hit.

Once you've got oxygen and are using it you'll be telling everyone else how wonderful it is.



malcolm wrote on Dec 4^th, 2010 at 6:13am:

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.

There is research linking driving a car to having a car crash, eating fatty food to heart attacks, drinking alcohol to liver problems... But it doesn't mean that everyone who drives a car will have a car crash, etc.

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.

4 hours is a long time. I had a 6 hour attack once...I was away from home...bled my O2 tank dry...passed out from the pain after 3 continuous hours...got home finally and hit all my meds at once and more 02...never had it happen again nor do I want to think it could. lance

You may be one of the lucky ones. This may help you with your own diagnosis.
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

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

Malcolm,  What kind of health care physicians do you have there??? 

Just to name one thing that stood out to me,


Quote:

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,

You seem to have multitude problems going on.  6 to 16 hrs. of constant pain does  not sound like cluster headaches.  As I read deeper into your post there are more things that would probably make a Dr. here scratch his head.  I sure  hope that their health care system where you are  will be able to sort you out.   I feel for you, I really do.    :'(

Linda