My dear friends,

I have now begun week 9 of this particular cycle.  I've done everything I can to battle the Beast ... and I fear he is winning.  After two rounds of prednisone with no relief whatsoever (I think the side-effects are almost as bad as the clusters themselves), my doctor has started me on depakote.  So far, I haven't noticed any relief, but perhaps it just takes a little more time.  Working on getting O2.  I just hope and pray this cycle ends soon.

I've begun to run into trouble here at school.  Last night at 11pm, I had my first K10 in nearly three years.  I found myself filled with rage, and took both the Beast and God himself to the mat, much like Jacob wrestled with the Angel of the Lord.  The battle was heard by my brother seminarians, and a deacon even got out of bed and sat with me for nearly an hour while I fought and fought.  I swear, he probably thought I was experiencing a demonic possession! (personally, i think i may have been)

Something struck me though.  The deacon said that he stopped in because the guys here love me and were worried ... yet, when I took the day off class today, not a single person stopped in to check on me.  NOT ONE!

It made me realize how blessed I am to have this site.  I know it seems that I come on here only to complain, but I thank you all from the bottom of my heart.

Please pray for me while I try to formulate a plan with the directors here at the seminary for completing the semester.  As of now, the headaches control my life, and I am no longer in a position where I can finish by the end of the semester.  Special accommodations will need to be worked out.

God bless you all, and please keep me in prayer

Keeping you in my prayers and hoping that oxygen issue gets settled. Imagine feeling the beast digging his claws in...then being pain free 6-8 minutes later. THAT'S what oxygen has accomplished for me. If your doc is too  STUPID  to try something with no side effects, oxygen, then go the welding oxygen route. It's relatively inexpensive and it's exactly the same stuff that comes in the medical bottles.

In my thoughts and prayers, hang in there...yeah...we really do understand.

Guiseppi

Father, (humor me since I know you are not yet a priest)


Seeing someone in pain like this is a very scarey thing to the un-initiated.  They may not know what to do.   Asking your deacon on how you are,  is a very loving way to skirt around this.  Do not fault them.  When you are in a better frame of mind and not in pain please sit down and explain to them about what you are going through.  I know you've printed some things off....show it to them so they can be educated and not so afraid.

I think you have a very good source of a family surrounding you there.  It just needs to be constantly re-enforced.  If they have access to a computer as you do send them here.  I....we will set them straight.


God Bless

Joe,

What Linda said......

Get the O2 and NOW... It's been such a lifesaver to so many of us and we're praying that it will be for you.

And remember what my Mama said -- The Good Lord don't put nothing on you that you can't carry...

Hugs BD

tell your doc I said to visit this site now.  Geez......  Do you have another option in seeking medical help.  If so, I would run from this one.  Have you tried traditional ch meds like verapamil and Lithium.  You need o2.  IT will give you control of your life again.  TRUST ME.....THIS IS GOD SPEAKING.  GET O2 AND GET IT FAST

What everybody said. It's more than a test. It's a horror.

Here is a technique that might help. It did me most of the time and good luck:

                                         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. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. 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. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments.

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.

I used to try to imagine I was pushing blood away from my neck 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      

kevmd wrote on Nov 20^th, 2008 at 5:33pm:

tell your doc I said to visit this site now.  Geez......  Do you have another option in seeking medical help.  If so, I would run from this one.  Have you tried traditional ch meds like verapamil and Lithium.  You need o2.  IT will give you control of your life again.  TRUST ME.....THIS IS GOD SPEAKING.  GET O2 AND GET IT FAST

   I agree with God.

          Potter

I feel for you.
I know everyone commenting so far has high expectations for oxygen and you should try it, because there is a high percentage of CH sufferers that respond to it... but there are another 30% or so that do not. Dealing with these things requires a medical support team that will try all means available in all possible combinations to achieve relief...for some it comes as easily as O2...for other it takes years of med combinations that must continually be rotated as the body adapts to each...but a measure of control can be reached with diligence.
Be brave and seek out the best medical help possible.

dionysiusaeropagite wrote on Nov 20^th, 2008 at 1:00am:

but I thank you all from the bottom of my heart.

Bro, no thanks are needed. We do this support thing standing on our heads, why?.......Because only we know.  ;)

You will get through this, I promise. (Jonny, 34 years with the beast)

02....Get it!