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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> I'm New here
        
(Message started by: Kontrolr on May 2^nd, 2007, 12:58am)

Title: I'm New here
Post by Kontrolr on May 2^nd, 2007, 12:58am

Hi! I'm Ken, I'm 33 years old. I've been married for 12 years and have 3 children ranging in age 13, 11 and almost 2. I have had clusters for as long as I can remember...about age 5. Of course, back then, I didn't know what the hell was wrong with me!
Every year in October, I could count on not having any sort of life for 2 weeks. When I was about 23, I started getting the headaches every other October. After October 2001, I haven't had any clusters until this week. I tried to run, but I couldn't hide. They found me! In April this time!
I actually didn't know what kind of headaches I was having until yesterday. I always assumed I just had cluster migraines and most doctor's just wrote me off as having that but then my wife found this site yesterday and I can't tell you how happy I was to find out I was not alone. I have never known anyone or known OF anyone that has these kind of headaches. Apparently no one I know does either because for my entire life, people have been telling me that I have a brain tumor, or it's a sinus headache or it's a migraine or they think I am exaggerating my pain. I could never explain to someone just how awful my headaches were because there were no words to describe the horrific pain that clusters cause. When I tried to explain my pain, of course, no one quite understood. I don't know how many times I have been told to "suck it up, I'm acting like a baby" I've even had that response at emergency rooms. Until this morning, I have never had a doctor take me seriously or even know what I was talking about. Thank GOD for my wife's doctor's office. I had to explain very little and they knew exactly what was wrong with me and what to do for me. They gave me imitrex injections, steroids and oxygen. Granted, so far, it hasn't completely taken away the headaches but I feel way better today than I have for the past week. Having read a lot of people's stories on this board today...I guess I am lucky that I don't have to suffer as much as some of you on here. I know what you're all going thru and my heart goes out to each of you that have to endure these evil headaches.

Title: Re: I'm New here
Post by ClusterChuck on May 2^nd, 2007, 1:14am

Hi Ken!

Welcome to ~~the nut house~~ Clusterville! It sure sounds like you have paid your dues to get here. We will pass you the secret handshake, once we ~~clean out your bank account~~ finish all the paper work involved.

You sound like you have a GREAT doctoor! You are SO lucky, FINALLY!!!

And yes, we know what you have beeen through. Most of us have been there, done that, and most of us have worn out the tee shirt, too.

Nothing will totally wipe out clusters. The best many of us get, is the weapons to keep the beast at bay. When you have a good doctor, good supporter (as your wife seems to be), and a good attitude, you can prevent the beast from winning, and that is our immediate goal.

You aught to try to plan to come east, and go to our convention in July, in Richmond, VA. There is nothing like meeting other clusterheads, and when you meet a whole room full of those drain bamaged freaks, it is AWESOME!

So sit back, and relax, and start reading. There is a tremendous amount of information available to you. If you don't find the answer you are looking for, just ask. Most likely, someone will be able to answer you, or tell you where to go .. (to find the information, silly!)

Just be careful, though, as I am the only sane one on the site. The rest are nucking futs!

Chuck

Title: Re: I'm New here
Post by Guiseppi on May 2^nd, 2007, 10:36am

Chuck has only recently been allowed to draw with something sharper then crayons so ignore him completely! ;;D

Your doctor sounds top notch as far as they go, knowing about imitrex, 02 and steroids is a great start. You need to start reading like a madman on this board, and look at some additional options. Imitrex and 02 are both great abortives, that is somethinging that stops the headache once it starts. Prednisone is a great preventative, something to reduce the number and intensity of your headaches, but it's best to stay on that as short a time as possible as it's a little tough on the body.

I use a 2 week prednisone taper when my headaches start up, usually 2x a year, spring and fall. I start lithium with the prednisone, it takes about 2 weeks for my body to build up the lithium levels, the pred keeps the beast at bay while the lithium builds up.

There are many other preventatives, a lot of trial and error but so worth it when you find a good combo. Do try and come to the convention, I've done two small size meet and greets, 10-12 people, it's a wild experience talking to somebody who REALLY knows what you're feeling. Welcome to the board.

Guiseppi

Title: Re: I'm New here
Post by Rosybabe on May 2^nd, 2007, 5:41pm

Welcome Ken !! [smiley=wave.gif]

Good thing you found the site (or your wife, what I find just wonderful), lots of people here who can help, give advise and ears to vent...

it' is open all the time, I mean ALL THE TIME! so you are never alone...

It is great you found a Doctor who knows exactly what to do , that is invaluable..

Hope your cycle last nothing and you will be Pain free in no time!

Title: Re: I'm New here
Post by Yorky on May 3^rd, 2007, 10:49am

on 05/02/07 at 00:58:23, Kontrolr wrote:

I have never known anyone or known OF anyone that has these kind of headaches.

what headaches...welcome aboard ken.

Title: Re: I'm New here
Post by michael on May 3^rd, 2007, 6:00pm

Hi Ken

I've had these things for 40 years now and until I found this site last month I had never heard of another sufferer.

Its only 10 years since I found out what they were myself, so good is the medical profession.

The problem I think is in the name. If you told someone you had a rare desease they would be a ears. Soon as you mention the word headache they think oh is that all.

Hope you are pain free soon.

Mike

Title: Re: I'm New here
Post by TonyG1 on May 3^rd, 2007, 11:18pm

Welcome home Ken !! [smiley=wave.gif]

Title: Re: I'm New here
Post by Charlie on May 4^th, 2007, 10:27pm

Welcome Ken.

Your story is so familiar. This thing is a true horror. At least here you are among people that know....really know just what this kind of pain is like. I've never found a good description.

Here is a technique that I used very successfully:

Dr. Wright’s Circulatory Technique:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

Charlie

Title: Re: I'm New here
Post by Erika on May 5^th, 2007, 2:13pm

on 05/03/07 at 18:00:03, michael wrote:

The problem I think is in the name. If you told someone you had a rare desease they would be a ears. Soon as you mention the word headache they think oh is that all.

Mike

That is it exactly! Bill was once even told "suck it up - it is JUST a headache! If it was something MAJOR it would have shown up on the MRI"

Title: Re: I'm New here
Post by BB on May 5^th, 2007, 9:53pm

Hi Ken and welcome

Tell people that you have Trigeminal Autonomic Cephalagia or Hortons Cephalagia, that will baffle people and they will treat it with more respect !

Sad but true that whenever you tell someone its clusterheadaches they downgrade your pain automatically !

Painfree wishes to you.

Annette

Title: Re: I'm New here
Post by Callico on May 6^th, 2007, 12:45am

Hi Ken,

Welcome aboard. Sorry you had to meet Chuck first, but he is BASICALLY harmless! ;;D

If you will go to the second posting on this page, A Letter to Friends and Collegues, you will find an excellent tool for explaining what it is you deal with. Feel free to print it and hand it out to those you deal with. Those that care will then understand, and those that don't don't matter. Simon has been good enough to allow the use of his letter as long as his name is associated with it.

Jerry