I'm new and not really down with the message board lingo yet, but I've been newly diagnosed with cluster headaches.  I have all the classic symptoms except for two: I'm not a man and the doctor said that cluster headaches tend to be run more rampant in guys, and during my episodes my nose and/or eyes usually don't run and/or swell up.

From what I've been reading on this message board, doctors tend not to take this disease seriously, but I had the most amazing doctor when I went into the emergency room and he recognized what the symptoms led to right away.  After ruling out tumors or anything else by giving me an MRI and a CAT scan, and giving me oxygen (which didn't work, which I guess is a rarity), I was given Percocet which helped the pain but almost immediately knocked me out.

Because I'm allergic to anything with codeine, and I'm taking a medication called Effexor what I can take for the pain is limited.  As a preventative measure, I was prescribed with an ibuprofen-based narcotic with instructions to take them at the first onset of an episode, but to only take them 12 hours a part.  These worked for the first week or so, but it seems that the pain is now getting progressively worse and the narcotics don't seem to help.  Since oxygen also doesn't seem to help, I'm running out of options.

I'm a 29 year old female who works in web-support for one of the largest communications companies in Canada and I have to be alert while I'm at work so I can't take anything that makes me drowsy.  I'm spending anywhere between 30 minutes to a few hours a day in the sick room of my work place because I can't just sit in front of the computer while they happne.

My question is, what works with you guys to ease the pain.  My doctor told me that the cause of these clusters are still not known and because I've just been newly diagnosed, we don't even know how long this will last.  Any help would be appreciated.

hi
sorry that you have to be here. i have found some MD's skeptical about the diagnosis of CH in a woman and i didn't develop the eye/nose symptoms until about 5 years into my CH's.
i think most docs ( and people) think clusters and migraines are the same thing.
that's great that the percs worked for you, but they're not a great solution, and no solution at all while working/driving or doing anything else requiring mental alertness.
as for the effexor, i'm stumped. i also take an SSRI (celexa), so technically should not use any triptan medication. my MD ASSURES me that it isn't a problem, but i did get serotonin syndrome once while using the 2 meds.(he doesn't believe me) i am pretty sure you can safely take DHE while being on effexor.
as for ibuprofen, if that worked to either prevent or treat a CH, the worldwide stock would be depleted (sorry:((
as an RN, i totally understand your need to be alert and functional at work, so narcotics are out too, which is just as well cause they don't really work.
although i cannot get my head around using prednisone again YET, it did work miraculously to stop my cycles 2 years in a row. you may want to read the thread about it under " treatments"
good luck and take care!

Hi Jenn!

Warm welcome! I'm so sorry that you're in pain...

You can find lots of useful advices and tips already above and at other parts of this site. I'm certain that you'll find a treatment, which works with your ch. It may take time, but you'll find it.

Wishing you lots of PF days,
Sanna

Thanks for all of the replies.  I've been reading a lot about taking Prednisone while in cycle, but I can almost guarantee that my doctor won't prescribe that to me.  I take it on a regular basis for my asthma when it gets out of control and it has already done not so happy damage to my liver.  With the asthma, I'm usually on it for 3 to 4 weeks at a time, and then have to wean myself off of it.  I didn't do that once and had a severe bout of Addisonian crisis.

I'm not on the Effexor for pain relief or management; I've been on it for a couple of years for depression.

I've tried taking caffeine as soon as an episode hits, but the thing is they usually start hitting at around 8:00-9:00PM and while the caffeine does help it also keeps me awake for the remainder of the night until about an hour before I actually have to get to work.  It's a vicios cycle that I'm either going to have to live with or have it kill me. 

The ibuprofen-based narcotic I'm on is Indomethacin.  The normal dosage is 25 mg, but I'm on 50mg twice a day as a preventative measure until we know how long this cycle is going to last.

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Hate to hear you're in pain, Jenn, but as the saying here goes: glad you've found us!
I feel vicariously ashamed of all the ignorant doctors I've been reading about here in people's horror stories, so I'm glad you've got a good one.
Luckily I had a very alert weekend/evening doctor who recognized my hit immediately (I was still in high school and my dad drove me) and gave me a shot of a beautiful little thingy called Imigran (Americans call it Imitrex) and what a relief it was when it began working.
Off course I had to go to the hospital for tests and scan, just to make sure it wasn't something even more evil haha. But yeah, I never realized untill now how great he was.... I live in a highly populated area so he probably had seen patients with CH before.

Bob_Johnson, I here you talk about Cyprexa and Efexor.... the latter is an anti-depressant, but isn't the first also or possibly anti-psychotic?
But they work for CH? Well, hopefully someday someone will find a cure to get rid of this demon once and for all.