Cluster Headaches

[Vudak]

Are any of you unfortunate enough to share my misery with cluster headaches?

Ugh...  I was first diagnosed about three years ago after scaring the heck out of my PCP...  He thought I might be having an embelyzm (sp?), the pain and symptoms were so severe.  I had to spend half the night in hospital, getting an MRI and CT Scans and everything else.

Now I can normally take an awful lot of pain.  I've played hockey, declined anesthetic at the dentist's to save some time, etc., etc., but THESE things knock me right on my butt to the point where I can barely do anything.

I've seen a specialist, who prescribed me pregnizone (sp?), which does help cut back on the total cluster time (down from, on average 8-10 days to 3-4), but those 3-4 are not very happy.

Of course, these things are still relatively unresearched, considering how difficult they are to research (kind of hard to plan research when they are so, thankfully, periodic), but I've noticed that when the right side of my jaw starts to hurt, they're coming.

About four years or so ago I actually had such bad dental pain that I had to insist on a rout canal and tooth removal for teeth that the dentist insisted had nothing wrong with them.  They just hurt that bad.  

I was wondering, for those of you who have these things, what are some tricks you've used to deal with them?  The pregnizone (sp?), icing the side of my head, and eating things like cold putting, keeping it next to problem mouth areas seems to help me a little.

[Rolex]

Ouch...

Yes, I went through a cluster headache episode about 2-1/2 years ago. First off, I understand what it's like and no one can imagine the pain if they've not experienced it.

For those of you who don't know, cluster headaches are not migraines. Women are more susceptible to migraines, but cluster headaches are almost exclusively a male phenomenon. Only about 1% of headaches are cluster headaches. The pain is so severe that it is estimated up to 40% of men with cluster headaches commit suicide. That is how severe the pain is.

There is no known single cause, but studies have shown some patterns. Some are triggered during a change of seasons and the most common pattern is alcohol consumption. That doesn't mean they drink a lot, just that their system is intolerant of alcohol. I was never a big drinker - maybe one beer a month - but I did drink wine and single malt scotch every once in a while.

I went through several doctors and many tests, for chemical allergies mostly, until one finally hit upon cluster headache. I was in agony for almost 3 months with the following:

- It always was worse at night, usually starting about 1 am, which is a common trait. I couldn't sleep and never slept for more than 2 hours at a time the entire time. That made me completely nuts after 2 weeks of such sleep deprivation. People thought I was psychotic.

- I had a strange hypersensitivity to smells during the day and especially to mold or fungus smells. I was so desperate, I moved out of my house into a new place with all new furniture and nothing but natural fabrics.

- It was always the same side of the head and affected my eyesight and equilibrium.

I've not had a drop of alcohol after the diagnosis. The doctor gave me some medication (can't remember name) for 3 days and it went away. She also gave me one pill to take if the headache ever returned, after determining that my heart and blood pressure were excellent for someone my age. I'm 54, but she said my cardio-vascular system was more like someone 25 years old. I'm not overweight and physically strong, which seems to be another common thing about cluster headache sufferers. The danger with this pill is that there is a risk of triggering a heart attack for someone my age, if I were not in good shape.

Luckily, I've never had to take it. The headache went away and my life went back to normal after about a month. I was drained from the lack of sleep. I found sleeping at almost a 45 degree incline helped me get those precious few hours of sleep.

Man, I wish you the best and know that there is someone out there who has lived through it. I've been warned that it could return, but I'm superstitious and have convinced myself that as long as I stay away from any alcohol, I'll be fine.

[Sox62]

I've been getting them since I was about 21.I had no idea what they were until I saw an ENT specialist.I usually get mine in the spring,and the cycle lasts about 2 1/2 weeks with me getting one,and sometimes two a day.To say they are painful is an understatement to say the least.

Yours is the first I've heard of a doc prescribing Prednisone to shorten the cycle.I'll have to ask my doctor about it.

What you need for the actual onset of the headache is Imitrex.You take it as soon as  you feel the onset of a cluster headache,it's most effective if you do.If you catch it quick,it WILL eliminate the headache.It doesn't work as well when the headache is in full gear.

Imitrex my man.Get your doc to prescribe it.You'll thank me later,believe me.

Here is a good link.

http://www.clusterheadaches.com/

[Vudak]

Man, Rolex, three whole months, huh?

It sounds like you unfortunately had one of the "worse case" scenarios for the headaches.  I don't know what I would do if I had to deal with them for THAT long.  An average of 8-10 days is bad enough, and, looking back to the first cluster (before I had ANY idea of what was going on), a full two weeks is torture.

The first cluster was especially bad because it had me thinking I had major dental problems, which led to major dental work, which led to the prescription of a narcotic for post dental work.  Studies suggest that narcotics only prolong the cluster time.  Yes, they'll give you a few hours respite, but that's not as great of a trade off as one might think.

It is interesting that you mentioned a hyper-sensitivity to mold and fungus smells, because for the past few days I've been noticing such smells in my basement that no one else in the family can detect.  They must think I'm crazy

Sox, I've taken Imitrex before (after being diagnosed the first time), but didn't get started in on it until the middle of the cycle, and thus didn't have the greatest results.  This was also about the time that the specialist told me the pain in my teeth was unrelated, whereas other texts found on the internet suggested otherwise, so I wasn't so keen on following his advice verbatim.  I'll have to go get another prescription for it though.

One question - do you use it, "at the hunch," or do you wait until the headache actually hits?  I've gotten pretty good at predicting when one's coming, but I'm not 100% accurate.

To tell you the truth I wasn't thinking I'd have one this time, as it is summer, and I'm usually affected by them during the winter, but we have had a brief cold spell up here last week.  Maybe that has something to do with it.

Also, swearing off alcohol just might be for me.  I'm also not a heavy drinker, but have noticed that every time I get one of these, it has been after drinking.  However, I don't get one every time I drink.

Thanks for the replies, guys.

[Traveler]

You might ask your doctor if he knows of any research that was performed in the use of O2, oxygen, to short cut the cluster headaches when it is first starting.

I was a Special Forces Medic and have been an EMT for the last 35 years.  I remember reading about the use of O2 for migraines of which cluster headaches is a type of migraine.  

Give the internet a shot.

good luck

[Rolex]

My doctor also said O2 at onset can help, but there is no treatment effective for all people. I forget to add that vigorous exercise at least 2 times per week - getting a second wind - seems to keep some people from having recurring episodes.

[Sox62]

Originally posted by Vudak
Sox, I've taken Imitrex before (after being diagnosed the first time), but didn't get started in on it until the middle of the cycle, and thus didn't have the greatest results.  This was also about the time that the specialist told me the pain in my teeth was unrelated, whereas other texts found on the internet suggested otherwise, so I wasn't so keen on following his advice verbatim.  I'll have to go get another prescription for it though.

One question - do you use it, "at the hunch," or do you wait until the headache actually hits?  I've gotten pretty good at predicting when one's coming, but I'm not 100% accurate.

I usually wait until I'm sure,which doesn't take long.It's probably only a minute or so after I first "suspect" one is coming on before I know for sure.

These suckers hit you quick,as I'm sure you're well aware of.

[Dago]

I don't get them, but offer some serious sympathies to those who do.  I hate headaches.

[eagl]

WTH is a "cluster" headache?  Is that like a brain cloud?  If so, I have a small problem with this volcano you might be able to help me with...

Is a cluster headache anything like a migraine?  What is the physiology behind it?  Or is your doc dumbing-down the explanation?

[Vudak]

Originally posted by eagl

Is a cluster headache anything like a migraine?  What is the physiology behind it?  Or is your doc dumbing-down the explanation?

I've heard different things, eagl...  "It's not a migraine," "It's a type of migraine," all I can say is that it hurts like hell.

From the people I know who get migraines, they usually try to find a quiet dark room, and lie down.  When I get a cluster headache, I'm pacing around the room, pressing or punching the side of my head, and generally just going completely nuts.

I mean, I don't know many people who go to the hospital for migraines, but I definately was sent there on doctor's orders for this thing.  The weird thing is, they pumped me full of morphine (as they did for someone on the message boards for that sight Sox linked), and it didn't do a darn thing.  Oh, sure, I was loopy as anything, and the rest of me felt great, but my headache didn't go away.

As far as the physiology behind it...  You know, I gather the impression that these things are not widely researched (probably because how do you research something that comes out of the blue without really much warning when in these days it takes a few weeks notice to get an appointment with a doctor).

The thing that sucks about these is that a lot of people think you're faking it, simply because you can be good for a number of hours, and then clutching your head like some possessed demon the next minute.  

I'm just darn lucky I'm an episodic sufferer rather than a chronic one, as some people are.  I couldn't imagine having this go on for nine months in a row.  A few weeks is bad enough

[rpm]

I get migraines and I have tinnitus. A lovely combination.

[Vudak]

Originally posted by rpm
I get migraines and I have tinnitus. A lovely combination.

Just from a quick google (I had no idea what it was), I'd say that could be a real pain

[Sox62]

Eagl,it's a variation of a migraine.It's also much more painful.It feels like an ice pick is stuck in your cheek,and someone is stirring it.You can't function in any capacity.

Before I knew what they were,my doc gave me percocets while I was waiting for my visit with the ENT specialist.They barely put a dent in it.

They're called cluster headaches because they come in clusters.They usually occur on one side of the face each time for each individual in the cheekbone.I to thought I had a dental problem when I first got them.Something triggers them,and no one knows what.It could be seasonal,allergies,etc.Something causes blood vessels to expand and beat on nerves in the cheekbone like a drum.I've broken bones,had various injuries,and nothing even comes close to this.

The Imitex I take is a vasoconstricter.It makes the blood vessels in your head shrink,and stop beating on the nerve(s).Imitrex can also can cause a stroke,which is why the quantity you can buy them is limited.

Check out the link in my first post.

[Vudak]

Originally posted by Sox62

They're called cluster headaches because they come in clusters.They usually occur on one side of the face each time for each individual in the cheekbone.I to thought I had a dental problem when I first got them.Something triggers them,and no one knows what.It could be seasonal,allergies,etc.Something causes blood vessels to expand and beat on nerves in the cheekbone like a drum.I've broken bones,had various injuries,and nothing even comes close to this.

I have to say this thread has been very reassuring.  The "specialist" I visited (he's a headache specialist, not really a cluster specialist, obviously - but he's also young, so I give him a chance), didn't think the dental pain was related at all.  Really, it's the thing that kills the most.

When I get these things, two things happen.  

1.  My teeth on the right side of my face start going crazy, with the upper back molar being removed on my insistence (I'm seriously considering having a rout canal done on some lower right incisors when I get the money, because getting rid of those nerves is one thing that definately works); and

2.  A vein on the right side of my head, about 3/4 " back and above from my eyebrow starts throbbing like crazy too.

[gpwurzel]

For those with cluster headaches, you have my deepest sympathies.......I get migraines once in a while - but they dont compare. Caught a documentary on cluster headaches.....(not for this callsign thank you).......hopefully they'll work out what causes them and find a way to at least knock them back down the pain scale....


Wurzel