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My latest bout with cluster headaches is finally winding down.

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MineralMan Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Jun-08-11 06:45 PM
Original message
My latest bout with cluster headaches is finally winding down.
Edited on Wed Jun-08-11 06:47 PM by MineralMan
I first got these things in 1991, with the first headache happening in Mexico, as my fiancee and I were enjoying seven days together nonstop to see how we did around each other 24 hours a day. That first cluster lasted 9 months, with several excruciating headaches every day and nothing to do about them. My family doctor didn't know what they were, so I had x-rays, cat scans, MRIs and other stuff...all to no avail.

Each headache is very similar to a brain freeze headache from eating too cold ice cream, but they last for half an hour or more. Amazing pain.

Finally, toward the end of that first cluster, I discovered what I had, by doing my own research. Oxygen tanks came to my house, and I could abort each headache in about 10 minutes. Then, they went away as suddenly as they started, only to reappear a year later, again just as suddenly. This time I saw a neurologist, a headache specialist. We tried one thing after another, without much success, including a medication used to stop post-partum bleeding in women. Nobody researches these headaches, because they aren't life-threatening, really, so it was all hit or miss as far as treatments went.

So, every year or two, I'd get to suffer for a few months. Wake up every couple of hours, head for the oxygen tanks, then go back to sleep, only to wake up again. Luckily for me, the headaches almost never occurred during the day, so I've always been able to continue working. But, the workday over, it was back to the cycle of headaches and oxygen and more headaches.

The doctors all said these things generally faded away as you get older. It was three years before this latest round came on. This time, though, I had a new tool. Sumatriptan (generic Imitrex), taken daily about half an hour before the first headache predictably would occur, would block the headaches for several hours. It's all off label, and outside of the patient instructions, but an amazing thing happens. After about a week of that, you can stop taking it and the headaches fade away and stop. It's a freaking miracle, for me at least.

Maybe this will be my last cluster. Maybe I'll never have these again. That would be a good thing. But, I'll keep a full tank of oxygen in the basement, just in case. That gives me time to get into the doctor's office and get the sumatriptan.

Life's interesting. All sorts of things come along to interrupt your normal routine. Some are worse than others. Some are deadly. Cluster headaches aren't deadly, but they're a stone bitch. I'm glad I've finally found something that helps end the cycle. Maybe, at 65, I'll have outgrown them. That'd be very good. If you know someone with these headaches, give them a hug.
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PDJane Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Jun-08-11 06:48 PM
Response to Original message
1. I've had them.
I'm glad you found something that helps; sumatriptan is a miracle, as far as I'm concerned. The later versions are just more expensive.
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MineralMan Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Jun-08-11 06:49 PM
Response to Reply #1
2. The generic version (finally) is pretty reasonable in price.
Edited on Wed Jun-08-11 06:51 PM by MineralMan
Just a few dollars a pill. I hate how I feel when I'm taking it, but it's better than the headaches, that's for sure. Of course, my insurance doesn't cover it, since it's an off-label use. Fortunately, my family practice doctor is very cooperative with all of this. His deal is "If it helps, why not."
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Cronus Protagonist Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Jun-08-11 06:53 PM
Response to Original message
3. I had these until I had my deviated septum fixed
Apparently I had a chronic infection of the sinuses that would flare up now and then. Once the infection was gone, the headaches went with it.
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MineralMan Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Jun-08-11 06:55 PM
Response to Reply #3
4. Did you see the movie "Pi." That guy had cluster headaches.
They're fairly rare, really. A lot of primary care doctors don't know about them. The companies who deliver oxygen sure do, though.
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Cronus Protagonist Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Jun-08-11 06:59 PM
Response to Reply #4
6. I had them all my life
Until the operation. Afterwards, I'm happy to say I'm entirely cluster headache free. I still get a headache from alcohol, so I don't drink, but nothing at all like the freezing cold ice-axe hammering into the temple that I had been getting...

I bring it up just in case it might help someone else.
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MineralMan Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Jun-08-11 07:02 PM
Response to Reply #6
7. Thanks. I can see how that might trigger them, for sure.
Something connected to the spheno-palatine ganglion, which seems to be the focus. It's up in your palate area, and is the trigger for the brain freeze headaches. I can see how an infection could be a trigger.

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Cronus Protagonist Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Jun-08-11 07:23 PM
Response to Reply #7
9. Yes, they were similar to brain freezes, only worse!
Debilitating. Pot also helped a bit. It doesn't take the pain away, but you can forget about it a little while studying little shiny things and listening to gentle music. Pot seems to help dissociate yourself from the pain. You know it's there, but somehow it's almost as if it's someone else's pain.
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Enthusiast Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Jun-09-11 05:29 AM
Response to Reply #9
12. When I was a teenager
I had horrible headaches. They would last three days. At 18 I smoked marijuana for the first time. I never had another one of those sorts of headaches again -never. Even though I quit smoking MJ many years ago those weird severe headaches never reappeared. It worked for me anyway.
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elfin Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Jun-08-11 06:57 PM
Response to Original message
5. Oxygen
My go to site for sensible remedies before I go to a doc.

This site is referenced on NPR and has done wonders for my arthritis so I no longer have to take massive Naproxin.

As always, try this first and report to doc if it doesn't work.

http://www.peoplespharmacy.com/2009/12/09/oxygen-eases-cluster-headache-pain/

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MineralMan Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Jun-08-11 07:07 PM
Response to Reply #5
8. Oxygen requires a prescription. So you have to see the doc.
However, it's usually pretty easy to get a prescription for it, and it's not horribly expensive, even if your insurance doesn't cover it (Medicare doesn't). There are other avenues, but I won't go into those here. Suffice it to say that it's available.
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LiberalLoner Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Jun-08-11 07:40 PM
Response to Original message
10. I'm glad you finally found something to help! I'm very sorry that you had to suffer for so many
years with that kind of excruciating pain.

I read once mankind isn't really afraid of death, so much as afraid of pain. I think it's true.
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MineralMan Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Jun-08-11 07:49 PM
Response to Reply #10
11. Well, it was just a couple or three months every couple of
years. Once the oxygen was available, I could deal OK. It was very, very annoying, though, and kept me at home during those periods.

But tonight is my first 24 hours with no headaches. It's almost certainly finished, this bout.
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