"That mostly the headaches are not that painful"

Schmily,

Hi, I am sorry I have not had a chance to answer you back with another email.

First of all, by all means, go and get a second opinion.  If the second doctor agrees that you have cluster headaches, then lets get to it!  You described, in detail, what your symptoms are.  Some are not quite normal, but not unheard of.  The times that you describe that are not as bad as other times, those are just lower level hits.  (See the KIP scale, behind the tab on the left side of your screen)

There are about three levels of pain.  The real low levels are what we call shadows.  They can last for hours, or even days.  They are more of a nuisance than anything else.  They are not debilitating, nor do they keep you from doing what you have to do (work, shopping, studying, house cleaning, or whatever).  But there is pain there, just not very high on the KIP scale  Say somewhere up to the level of 4 (on the KIP scale).

Then we go to the mid range pain.  Those are in the 5 to 6 range.  These are much more painful, and make it very difficult to do what you need to do.  Many times you get into the restless, pacing stage.  These are painful, but you are not ready to blow your head off, sort of pain.

Then we get into the serious level hits.  The 7 to 10 level hits.  These are the hits that bring you to the pacing, head banging, head punching, hair pulling, screaming, cussing, praying, kill-anyone-who-gets-in-your-way kind of pain levels.  At these levels it is virtually impossible to do anything constructive.

Being chronic, like you and I are, we can get any, or all of these, several times a day, every day of the year.

This next part is going to be a very difficult posting for me to do.  I want you to know that I am doing this, and saying this with all the love and respect that I have to give you.  You are young.  I am old ... VERY old!  LOL  Think of me as a father or  <shudder> Grandfather figure.  What I am going to tell you, you will not like, but remember, I am that Grandfather that loves you, and is telling you like it is, for your own benefit!

First of all, GET OVER YOURSELF!  You are in a tough spot, ok, I can accept that, and I have been there too.  But SNAP OUT OF IT, and quit feeling sorry for yourself.  You have had your pity party, fine, but now it is time to snap out of it, and grab the bull by the horns, and get yourself together.

Knock off the WOE IS ME kerap!!!

Ok?  Do I have your attention now?

Now, in reading your email, and your posts here, I see that you have given in to the beast, and are letting it control your life.  I see resignation and surrender in your words.  Giving up is letting the beast win.  We are clusterheads.  We are STRONG!  We NEVER, EVER let the beast win!  You need to stand up, look the beast right in the eye and say FUCK OFF!!!  And MEAN it!

You are now saying: "Fine for you to say, but you don't know the position and state that I am in .."  Well, to put it bluntly and distinctly, BULL SHIT!  I know EXACTLY the position your are in!  I know EXACTLY the state you are in!  Why?  or HOW?  Because I have been there.  And, unfortunately, more than once.

The first thing you need to do, is change your attitude and outlook.  Your attitude is the strongest weapon you will find or ever get, to fight the beast, and YES, it will be a fight!  You need to quit worrying and dwelling on the times that you are in pain, and fully enjoy, and relish the times in between.  Your pain free times.  Relish THOSE times!

STOP saying that you are sick!  You are NOT sick!  Resigning yourself to the label of "SICK" is giving up.  You are a person.  You are a human being.  You have eyes of a certain color.  You have hair of a certain color.  Your hair has a certain level of curls or lack of curls.  You are of a certain height.  You also happen to suffer with a condition called cluster headaches.  Don't define yourself with the label of a cluster headache person.  You are a person, FIRST, with many traits and features, and only ONE of them happens to be cluster headaches!

Read and learn all you can about this condition.  Find out what others have taken for medications and levels.  Try what others have tried.  If you have done so in the past, try something else.  Try some of the unconventional methods.  Read up on kudzu.   Read up on some of the natural supplement and diet plans that many have had success with.  Go to the clusterbuster site and read up on what they have to say.  Get aggressive in your pursuit of a treatment plan that works.  Get imaginative.

Get aggressive with finding an abortive that works to kill a hit, once it starts.  I don't remember seeing any reference in your posts to using oxygen.  If you have used it in the past, and it didn't work, try it again.  We have developed newer and better methods in the past few years.  Read all the information, on the left side of your screen, behind the tab: oxygen info.  Try it!  or TRY it AGAIN!

I am sorry this got so long and wordy, but I needed to get you motivated, and informed.

Remember, work aggressively, intelligently, and persistently.  Ask questions of us.

Keep us informed!  We DO care.

Chuck

WOW!!!

I sure hate to see you leave.  We are concerned about you and care.  How can we keep up with you if you leave?

<sigh>

Well, at least you say you are doing better ...

Chuck