I am a 39 year old chronic cluster headache male. I have had cch's for 22 years. With 3-7 one hour, mind bending, soul deflating, people laughing, doctor smirking, brain busters a day. If I was lucky, they would go into remission for 3 days (ahhhhh a break). I would grit my teeth, pull my hair, pound my head, cuss under my breath to no avail! I would also drink harder, work harder, and run faster to forget about them in between......to no avail.

Please believe me when I say, "I found a place, I believe, others suffer just like me." And that truly IS comforting.

After 15 years of "fighting" my headaches and the doubts of what I thought other people were thinking of me, I finally gave up. When I gave up I mean I quit trying to force these headaches out of my life. When I start pulling my hair and cussing under my breath it added frustration to the mix. Which elevates my cluster headaches from a 7 to a 10 (kips ch scale)almost simultaneously. I really hate going there!

This may sound defeating to most, but there is a possibility you may have these headaches for the rest of your life. 

So now that I have personally accepted that I may get these until I die. And that there are people that will never understand our turmoil, have they gotten any better? YES AND NO! "Yes", I moved to step 10 much, much less. And for 2 years not one migraine. "And No" about 2 weeks ago they started coming back.

Disheartening for sure. But these days I prefer not to crumble to the frustrations, helplessness, self pity and agony, which lead me deeper into the abyss.

During my bouts I prefer to use an ice pack, occasionally some over the counter pills, some hot coffee to loosen up my sinus, extremely dim lighting, cool rooms, ask everyone to put their scents on outside. Occasionally asking my wife to lightly run her fingertips over my back, for me sometimes goose bumps work. Corny but true!

Please respond if you are on the same page as me. And I will be praying for you all. godspeed

Hey Haunted,

Yep, sounds like you're doing it rough and we all know how that goes.  I notice that you say you are using over the counter meds - generally these will have little effect, except perhaps the side effects.  Have you seen a headache specialist??  Have you ever tried a preventative med eg. verapamil?  I swear by oxygen - high flow rate - finding I can abort a hit in under 10 mins.... melatonin for the night time hits...  Lots of different ways of attacking this beasty - suggest you read other newbies posts for lots of great advice.

I am sorry to hear how much you are hurting, but you have come to the right place!!  Stick around, ask plenty of questions, I'm confident there is some relief to be found.

Wishin you all the very best,

Kate

I'm all for accepting the fact that CH is here to stay....and will always be a part of my life. You and I agree on that. That's where the agreement ends! Lovingly.

Don't just grin and bear it. 32 years of CH and I used to just use ice packs, coffee, long runs, and enough OTC's to kill a dozen livers....to treat my CH. Then my wife got sick of seeing me suffer and lovingly suggested...(almost at gunpoint).....that I see what modern day medicine has to offer.....damn.....they may not know everything but they sure gave me my life back.

For preventative meds...those you take daily to reduce the number and intensity of your hits: Verapamil, Lithium and Topomax. I use Lithium, blocks 60-70% of my hits.

For abortives: Oxygen. Imagine feeling an attack starting...and 8  minutes later, it's gone and you are completely pain free. That's oxygens story. PLEASE.....read the oxygen info tab on the left....gave me my life back, it's that effective. Imitrex injectables are expensive but incredibly effective. Energy drinks, those containing caffeine and taurine, I like sugar free Red Bull, will abort or reduce many attacks for me.

I admire your attitude, your a fighter and a realist......but damnit there are too many effective tools to fight the beast with and it hurts me to see another hurting with these things. The memories of untreated KIP 10's are still too real for me.

Welcome home, yeah, we understand.

Joe

Haunted, please do pay attention to the advice you have been given. It's wise and right on. You said:

Quote:


If you mean you are finally past the denial stage then all I can say is, "good for you!" Denial can only keep you from finding a good preventative and abortive. But if you are saying zen-like acceptance will help ease the pain, I will have to disagree. Acceptance can do lots of things positive, but stopping an attack isn't one of them. For me, anyway, when it comes to ch's, I am a fierce fighter for a pain free life. God bless! lance

hey Haunted,

I am doing the same thing you are. Just gutting it out. I've been at this for 38 years and taken every freaking drug they have to dole out.
The last two cylces I refused any meds just hit the O2 and took cyclobenzaprene for my effed up neck.

This time I'm doing not much of anything. Oh ice packs and coffee, melatonin at night at only 2mgs.
The thing is, I'm handling it ok. So far anyway.

I know ya'll think I'm crazy but for me, this time its working. I'm coping well and not having to fight all the meds in my body.

Have you tried the clusterbuster methods?

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

I'm agreeing here with the "why suffer needlessly?" type replies here.

O2 and some ClusterBuster methods have been offering impressive results.

Haunted1,

First, please read the imitrex tip: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

This will explain how to dramatically stretch your imitrex doses. I and many many others on here can vouch that this is very effective.

Second, I can understand how those touting Red Bull, pschedelics, etc. may come off as desperate kooks  but this is actually far from the case.

We've seen numerous cases where Psilocybin has been a more effective preventative than any drug, including one chronic case so severe it was beyond anything I, and I believe you, could even imagine. This is why none other than Harvard medical is launching trials, research is also underway in Europe, and we are hopeful that BOL - a non hallucinogenc form of LSD  - will be approved and prescribed at one point.

I imagine you probably missed the specific coverage (very favorable) about this in Newsweek, National Geographic, etc., as I would've, had I not heard about it here.

Here's a video talk by one of our fellow CHers on the subject to get you up to speed:
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

I'd also like to share with you the number of full blown, full length attacks I personally experienced during my last 2.5 month episode:

Zero.

This is in large part due to the fact that I listened to, and followed advice from the same folks who have been offering it on this thread. And I learned that Red Bull is kind of yummy  (OK  that part is strictly personal opinion).

1haunted1   ,-( wrote on Aug 3^rd, 2010 at 10:57am:


1haunted1,
I am glad you've found a level of peace in dealing with your CH and what it does to you.  For myself, I will never stop trying, never stop fighting, never stop struggling to take my life back during episodes.

Before I came to this site, I knew quite a bit about medications for CH - what was recommended, what was not, what the studies said, what has been disproven. 

What I DIDN'T know and what I've since learned so much about is non-book treatments for CH - high flow o2, red bull, ginger, higher dose melatonin, blood pH manipulation, etc.  No, these treatments often haven't been formally studied but the effects from trying them is minimal, the monetary cost is low compared to medication, and they may just work!  Hurrah!

Also, I must say, when I came to this site a few months ago, I was on my last legs - desparate.  Two children under 4 with one one the way, trying to hold down a job where people depend on me, and support my family - hadn't slept more than 2-3 hours total a night for more than a month.  Unable to take some of the standard treatments for CH because of the pregnancy.  Scared for my baby.  Scared for myself.  Every time I closed my eyes, there the beast was.  I am suprised I was able to put 2 words together I was so brain blasted.

This site helped me - tremendously.  After my hazing initiation ( ), I found a group of people who were willing to keep supporting me though my fight.  There with all sorts of encouragement and advice - whether alternative medicine or otherwise.  And it has WORKED.  I get one shadow (sometimes none) per day about 10:00pm - and that is all!  I am on verapamil, folic acid, magnesium, and just a tiny dose of lamictal.  I haven't had to take any narcotics in over a month.  My baby is growing well and is fat and happy - haha and so am I... 

Please, listen to these people.  They have nothing but your best interests in mind - including myself...

Haunted1, I should've added that I think you make a good point about state of mind, and it's another thing I think a lot of us  could benefit from having in our arsenal in case the beast escapes all the well laid traps we've been ensnaring him with (it's just not a first line of defense for most of us).


1haunted1   ,-( wrote on Aug 3^rd, 2010 at 1:06pm:


Good point - we should know how to identify psilocybin mushrooms in the wild in such a case -  that's what the indigenous peoples knew to do. 

Ya know, even though you shroud your skepticism and criticism in diplomacy, I still read between the lines: "None of the drugs or treatments you people use are really responsible for killing your pain. I have found the key - mind over matter."

Stick around - I like the way you argue. While mindset is a very important tool in this struggle, some of us have added a few more tools to our toolbox.

Think you missed a couple of lines brew, I do use imitrex(with restraint).Will try red bull(with restraint) and oxygen(freely). I dont consider anyone on this site "you people". Consider it more of an us. I get the feeling you think im arrogant. Im not, Im trying to shed some light on something I believe to be very important and cast down upon here.

Brew

Mind over matter was never a part of what I was saying. I think that implies I could control them mentally. Only wish I could.

Maybe you and some other people do get that vibe. I apologize. Your signals and vibes could be crossed. I have used many different kinds of street drugs(i've stated), so for me to treat people ANYwhere contemptuosly is absurd in my mind. So good for all those people breaking ground with hallucinogens you have my gratitude not contempt.

desperate people take desperate measures. So brew please be careful how you extend your advice. lets face it nothings been provin yet. Till then chin up I guess