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 Jenn, and welcome.

As you've now learned, pain meds don't work for clusters but I am a bit surprised by the o2 not working, in that it seems from your post that it was a one-time administration and could've been done wrong. Did the doc use a non-rebreather mask at a flow rate of at least 15 lpm? How long into an attack was it administered? Your doc may have diagnosed correctly but seems woefully inadequate in his treatment plan. You may want to research the meds board for more info, and share that info with your doc.

For many here, redbull at the very first sign of an attack can knock the beast back, and melatonin at night to stave off the night hits. A good ice pack (frozen veggies!) on the affected side can be a big help too.  

Others will be along shortly who can explain more in detail, but know that you DO have options in your treatment and how you learn to live your life with ch.  

That being said, welcome to the nuthouse! You'll find many people here who are  a great wealth of information and support.

Wishing you pain free time!

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!

There are no narcotics that'll effectively treat the pain of CH. The most effective way to treat them is to attack the mechanism of pain. That's why the oxygen is so effective. But for oxygen to work, it has to be started at the first hint of an attack. If you wait till you're in full attack, the oxygen tends to be next to useless. Once I let the headache establish, the only chance for me is an imitrex injection.

Stop looking for ways to make the headache stop, and adopt a "management plan."

1: A good preventative medication. This is something you take while you are in cycle, that is getting headaches, with the goal of reducing the intensity and or frequency of the headaches. I use lithium, other popular prevents are verapamil and topomax. Many more to read about on the med board. Most take 7-14 days to start being effective. During this time it'snot uncommon to be put on a prednisone taper, from 60-80 mg a day reducing down to zero, holds the CH at bay while your prevents build up.

2: A good abortive strategy. A headache is starting, now what? First line of attack should be oxygen, using a non re breather mask, at a high flow rate, at least 15 LPM. I can abort an attack in less then 10 minutes using just oxygen. You need a portable rig because by the time you drive to a hospital and beg for oxygen the CH is established and the oxygen is not effective. Other great aborts are imitrex injectables and nasal sprays, pills normally take too long to get absorbed to be beneficial.

You have much reading to do. They haven't cured these damned things yet and there isn't a magic pill to stop them. But they certainly can be managed. Glad you found us, hope we can help you.

Guiseppi

Hi Jenn!

Warm welcome! I'm so sorry that you're in pain... [smiley=hug.gif]

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

I'm uncomfortable to read that you appear to not have been referred to a good headache/neurologist. Pain meds and the Effexor are not effective with Cluster.

Here are links for list of current treatments and some informational articles.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
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Michigan Headache & Neurological Institute for another list of treatments and other articles:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

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Explore the buttons on the left of this page starting with the OUCH site.

But please be aggressive in finding a good doc.

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.

On the two links I sent: look for reference to Zyprexa (olanzapine) as an abortive. Will not conflict with your other meds and, if it works for you, will abort an attack in 20-min or less.

HEY JENN, COACH BILL HERE PLEASE GO TO START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE its is worth your time. Fell better soon. Coach bill

Hello Jenn:

Sorry you're having all this pain.  I would like to point something out.  Indomethacin is a NSAID, Non-Steroidal Anti-Inflamitory Drug, in a class of drugs related to Ibuprophen.  Please note, it can be rough on your stomach and take it with food or milk.

This is NOT a narcotic and, in my experience, it won't do much for cluster headaches.  I hope the doctor did NOT lead you to believe it was something it is not.

You need a headache specialist.  Follow the links Bob Johnson gave you and read, read, read.

Wishing you well,

Ray

Jenn,

You need to give Lisa Hertz a.k.a. "Swimchica" a PM.  She has loads of experience with both asthma and cluster headaches.  She's also been treated by some of the best medical minds in both fields.

Bob Johnson gave you a link to MHNI...  They see over 100 cluster headache sufferers a year so have far more first hand experience in treating this disorder and knowing what works best.  Oxygen therapy is at the top of the list as part of their abortive strategy in treating acute cluster headache attacks.

Take care,

V/R, Batch

Jenn,

O2 at 15 liters with a non-rebreather mask at the first sign of a hit works great for a lot of us, but used incorrectly is useless. Make sure if your doc uses O2 it's the CORRECT way.

As to meds. VASO-CONSTRICTORS are about the ONLY meds known to stop the pain of CH (Imitrex or Ergotomine) - pain meds are USELESS.

In a pinch - try 3 Extra Strength Excedrin and a Red Bull (or coffee) - just don't do it on a regular basis or you'll have rebounds and you don't want that. This will stop a hit for me if I get to it soon enough.

Get to a NEURO who knows something about CH. That's really important.

:D :D :D And don't worry about not being a MAN - there's a BUNCH of us Wimmins around here in Clusterville who has these things.... regardless of what them darn doctors say. In fact we disproved that theory a LONG time ago.... (Except in Bob P's mind and he still swears we has MEEGRANES - that's an OLD joke on the message board :) )

But welcome to Clusterville = Ask questions - there's someone here 24/7 and we're here to HELP.

Hugs BD

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.