I started getting mild clusters at 15. They lasted for about two years and I thought it was just puberty and hormones. At about age 22 my clusters came back set to destroy everything I've ever worked for. This kind of intense pain on a daily basis for years has completely changed my disposition. How could it not? I live every day like it's my last and some days I feel it would just be better for me and my family if I were gone. However, I am becoming less and less hopeless. I've proven to myself to be stronger than I ever imagined. I am without health insurance. I have had NO luck with any meds that I've tried. I'm sure I will not spell them correctly, but here we go: Imitrex, Maxalt, Depakote, Indomethacyn, Prednisone, I really could go on and on. I've tried so many things for long periods of time and can't get any relief. I ended up going to a pain specialist and taking narcotics. I still have pain, but sometimes I think the rescue meds can work, but it is hard to tell because each cycle will go away on its own eventually. I have nothing to prevent them. Now I suffer the clusters and tons of side effects from methadone, which I've been on for year and decided to decrease to get off because I still have pain and now I fight extra hard to stay awake. I've heard about several possibilities for the future when I can afford the care, but I just don't know where to start, maybe someone can steer me in the right direction.
abby :'(

welcome
Have you tried O2?
also put energy drinks or have strong coffee prepared onset of a crisis and drink it fast along with an abortive,i use  DHE pill nowdays for abortive since they are lot cheaper than imigran pills and i ve got no insurace.
But you ll have to ask a headache specialist about it
anyway.Also i am not sure but i think narcotics,methadone are not the ones that could help with Ch.
Hang in there
you ve lot of reading to do
and support to find here :)

Ouch....you're in a bad place right now. The problem with CH is the pain is too intense for pain meds, anything short of knocking you out is a waste of time. We focus on what is causing the pain, hoping to abort that before the pain takes hold.

Breathing pure oxygen will abort an attack for me in 6-8 minutes. For years my insurance would not cover it so I was paying it out of pocket. $4.25 a month tank rental for each E-Tank, and $13 each refill. Welding oxygen, same stuff as the medical grade, is even cheaper. Read the oxygen info link on the left, complete with pics and instructions.

Like Black said, energy drinks. Red Bull, Monster, any containing the combo of caffeine and taurine, chug it down at the first sign of an attack. Will abort ot blunt an attack for many.

We've had several CH'ers go down the pain med route you're on. Most have ended up in the same boat as you. Let's see if we can help you find a way to put this beast back in his box!

Joe

I have tried the caffeine chug, from reading online. I've only tried oxygen a few times at the hospital or doctors office, that was after I'd started an attack. It's so expensive to get in a doctors office, so I quit asking about it. There is an oxygen bar where I live and I've never tried it. Of course, I will try anything. Its too hard to hide my pain all the time. My husband doesn't even want to be around me anymore because its just too sad. He feels like he can't help and nobody likes to feel helpless.

While caffeine alone has proved somewhat helpful, the energy drinks combine caffeine and taurine, the combo of the 2 seems to turbo charge the positive effect they have for many of us.

The oxygen. For me, a delay of a few minutes can dramatically decrease the effectiveness. If I had to drive to the doc's by the time I got there the atttack would be set in and 02 wouldn't help much.

Oxygen bar won't help you much either. For 02 to work, your lungs need to get 100% oxygen, no outside air, no exhaled air, and it must be started at the first sign of an attack. So the nasal canulas they probably used at the doctors were about worthless. Read the yellow, oxygen info tab on the left, it's changed how people treat their headaches.

Also, go to clusterbusters.com     there are alternative treatments available which show tremendous promise, at relatively low cost.

Joe

Sorry to hear about your very severe case abbywyo,

Being chronic like that, with no meds working, reminds me of the extreme case of Michael, whose dad Ron (sreen name: "Bonkers") came on here awhile back, and still reports.

Michael too has been on methadone a long time, and was even put in an induced coma at one point.

As we watched things unfold, Ron recently found a very effective, natural, non toxic treatment that the last time I checked has Michael pain free something like 4 days in a row, 4 out of every 6 days, and steadily improving, with what looks like a reachable goal of 24/7 relief in sight.

Here's a recent Newsweek article on the clusterbusters route that they are taking:

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More info can be found at clusterbusters.com and the message board there (which apparently is offline, being updated right at the moment, but hopefully will be back online soon).

In Michael's case, O2 didn't even work, but it's probably at least worth a try for you (?), and it must be done as outlined in the oxygen info link to the left of this web page for maximium effectiveness.

So since we've seen others with terrible cases like yours find relief, I would think there's hope for you to fight this beast back also. Please hang around here (and possibly clusterbusters.com too) a LOT.

[Edit]: While I was slowly typing this, Giuseppi snuck in and posted much the same info before I could post mine (you beat me this time Giuseppi!), but at least this will hopefully show that neither of us is a lone crackpot.  :)

Well there Abby, join our crazy club!  Like everyone is saying, don't get mad, get even.  Read all you can, get lots of oxygen and try all the other stuff we use.  I skip all the meds too, so don't worry about it too much (I am not chronic, I know different story). 

Somewhere on this website will be the answers you need to help you manage your pain.  Everywhere else there is lots of support.  We are all in the same boat and we won't tell you to lay down and take some aspirin.

Good luck! (and you get a..... ;D laughy guy so you remember that there are good times ahead for you, hang in there.)

--Shaggy

I left a message with my Dr.'s nurse about getting O2. I am nervous because I watched my grandma go on oxygen when she was suffering from lung cancer. I can't bear to hear the sound of the generator machine anymore, but if they don't work anyway then I'd be more comfortable with a tank. I just see them and automatically think about death, but if it takes the pain away I'd have a different association. I'll have dreams about these tanks. Thanks, Ill let you know what happens.
Abby

abbywyo wrote on Apr 28^th, 2010 at 6:27pm:

I left a message with my Dr.'s nurse about getting O2. I am nervous because I watched my grandma go on oxygen when she was suffering from lung cancer. I can't bear to hear the sound of the generator machine anymore, but if they don't work anyway then I'd be more comfortable with a tank. I just see them and automatically think about death, but if it takes the pain away I'd have a different association. I'll have dreams about these tanks. Thanks, Ill let you know what happens. Abby

After the first couple of times you stop a hit in its tracks with oxygen, you'll view that friendly green tank as your very best friend in the whole world.  Trust me on this.

Best wishes,

George 

Hi Abby,

I read your introductory message this morning but didn't have time to respond then and I've been gone all day.

It sounds like you're getting some pretty good advise. This forum and its companion, START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE, provide the most current and accurate information and the most informed and responsive membership for cluster headache patients on the planet. Everyone here is either a sufferer or the supporter of a sufferer. Read as much as you can and try to keep an open mind.

My son Michael, like you, found that only narcotics (in particular, methadone) were able to take the edge off his pain. He is now an addict, taking 8-12 pills/day when in cycle - which is all of the time, since he's chronic - and 6/day when he's pain-free (PF). His PF days now outnumber his cluster headache (CH) days since we began "clusterbusting" with psilocybe mushrooms. I've tried to keep a running commentary of Michael's adventure in clusterbusting on this and the companion site if you're interested. Our screen name is "Bonkers" on both. Feel free to PM me on either site, or, if you'd rather, my email address is layvuz4@nethere.com.

I wish you all the luck in the world. Everyone on both sites will be happy to answer any questions you may have. If you stay awhile, I promise you'll find help for your condition and you'll probably make a few friends.

Ron