Hello,

I have been suffering from daily cluster headaches for 1 1/2 years, migraines for the 30 years before. I have tried every medicine, gone to the ER 35+ times just this year for relief and am waiting to receive approval from insurance to approve a nerve stimulator and am not holding out hope as insurance denies everything on first site. I cant take this pain anymore and am constantly thinking about an "exit strategy". I have two daughters and simply cannot allow them to see me like this. I so want to see them grow up, get married, have kids...whatever...but the burden of this daily pain is becoming too much. It's just so embarrassing to have them see me less than myself. I have always been upbeat, outgoing and positive and now I am a walking ball of sadness and pain. I don't want to lay anymore of this on my wife...i'm sure she's scared as hell about what i might do and i dont want to burden her any longer. Does anyone know of a group that meets to talk about this pain? Maybe talking with others would steer me away from the negative thoughts. Thanks.

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Please revise your exit strategy.  You have 2 children who need you.  Almost all of us have kids who have seen us in the throes of an attack.  Most will tell you their  children have grown up to have more empathy for people in general, than with a parent who does not have CH.  The "exit" of you will do so much harm.  Much more than CH could ever dream of doing to their phyches.

There is help here on this site and hundreds of other sufferers who understand you as well as trying to help.  There is an end to this tunnel.  Brews (above) way is a great one and has helped more people than you can imagine.  There are also other ways of treatment too.

You are NOT alone in this fight.  We want to help.  Oh...stop going to the ER.  Too much time and money and they do nothing for you.  The "group" you are referring to is right here.  We do have several get togethers every year.  One is in St. Louis in January  and a yearly convention which we still don't know where that will be yet.  Please stick around and read everything here & ask questions. There is no other site devoted solely to CH than right here and at OUCH.  Link to OUCH is to the left of where you're reading right now.

Be strong.  [smiley=hug.gif]       Linda

Hi there,

I know how dark and desperate things can get, but there are things left for you to try I am certain! Could you see a new dr perhaps that might offer a new strategy? Have a new approach? Offer some hope to you? I saw a new dr myself today who ticked off a list of things that I have yet to try, some I had never heard of... Just knowing that there are options left me feeling hopeful and energized. I am currently not in cycle...so it is easy for me to talk, I know, but you do have young children who love and need you! I have twin three year olds and one of their first words was headache... Not my proudest achievement, but it's life. It's the way it is...

There are many many people here for you with miles of collective experience and data and encouragement and strength!

Try seeing someone new. Good luck to you!!

Tate :)

Most doctors, especially ER doctors, know squat about CH. Not wholly their fault, it's a rare disorder, doesn't kill ya, and nobody famous has it. That puts the burden on our shoulders to educate ourselves as to a treatment plan, then find an open minded doctor who will listen to you.

The link Brew gave you is the cheapest and probably the most effective way to deal with CH, put some time into exploring that board.

If you are going to go the medical route, here's the basics.

1: A good preventative therapy. This is a medication you take daily while on cycle, to reduce the number and intensity of your attacks. I use lithium, at 1200 mg a day it blocks 60-70% of my attacks. At that dosing you can't tell I'm taking anything, don't let the name "lithium" scare ya! ;)

The most common and succesful prevent med is verapamil, we take it at doses much higher then most docs are comfortable with, some go as high as 960 mg a day to get relief. Takes some trial and error to establish dosing. Topomax also has a loyal following.

2: A transitional therapy. Most prevents take 10-14 days to start helping you. Many of us go on a 10-14 day prednisone taper, starting in the 60-80 mg a day range tapering down to zero. Prednisone, at doses as low as 30 mg a day, will provide 100% relief for me. but it's NOT a med to take long term as it plays hell with your joints and many internal organs.

3: An abortive therapy. A headache is starting, now what? You've probbaly chewed enough aspirin and poked holes in your gut with NSAIDS to know that OTC pain meds are worthless. Oxygen should be your first line abortive. Especially if you go the route Brew suggested as you have to detox off of all meds first, the only abortive you can use is oxygen. I can kill an attack in 6-8 minutes just by huffing pure 02. That compares with the old days of 90-120 minute head banging attacks. First time you abort with oxygen you'll think it's magic it works so fast.

Imitrex injectables work well but many are convinced they extend cycles. No hard and fast studies on that, just the opinion of many on this board. I use them when I get caught away from my 02. Imitrex nasal spray works for many, the imitrex pills typically take to long to be absorbed to help CH'ers as our pain ramps up too damned fast.

If at all possible with your insurance situation, get a referral to a headache specialist neurologist. Even your garden variety neuros just don't know much about CH. The head is a complicated piece of machinery. There are hundreds of headache types, some which even mimic CH. It's critical to eliminate all more serious possibilities, before establishing a solid CH diagnosis, and getting a decent treatment plan. We'll help you all we can.

Joe