“The pain of the mind is worse than the pain of the body”

On  my journey , a “journey to” the Occipital nerve stimulation surgery, I have stopped practically all the
preventive medicines, be it Lithium or The GON (Suboccipital injection with long-acting steroids in cluster headache) and the alternative preventive medicine to GON the Stelatum Blockade, the only preventive still
on my “menu” 80mg. / day of Verapamill a dosis that is way below the lowest level recommended for CH.
I am not a masochist, I do not enjoy pain….. but this move was “forced” on me, the GON was a good preventive,
It was just “killing” me (I am over sensitive to the betametason) and the lithium seemed to “dislike” me to…..
So I am left standing in the “rain”…… And the attacks and the pain didn’t take to long to conquer the unprotected
territory….  so I get attacked about 3-4 times a night and about 2 times a day…. with O2 and Zomig Nasal
as my only way to fight…..
This situation has its advantage though, I am going to the surgery with out any “baggage” and can evaluate the¨
effect of the Occipital nerve stimulation very realistically, and with no doubt at all, are the Pharmaceuticals
or is the Occipital nerve stimulation responsible for Improvements’ or for that matter failure.
I seem to suffer this time more, it seems to me that, not only I forgot how painful this is, I defiantly forgot
how grinding it is, on the physical, as well as on the psychological well being….. and it seems even harder
to except it now, the grinding situation, and much harder to find a balance, and the will power to fight, and
go on fighting, and in between the fights to enjoy life, I seems to me like I had it all, and lost it!
I frustrates me, it angers me. I know (logically) I am with the wrong attitude, and going the wrong pass….
but I just don’t seem to gather that will it takes to go head on into the battle…. I seem more aphasic….
I do go to work every day, try to fight (with little power, and vim’s) I do try to do all my duties, but some how
with less interest and joy….. I know that I will snap out of this, sooner then later, it just seems to have caught
me in surprise…..  and I was not (really) ready for it, or just refused to “get” ready for it, and believed that the
la dolce vita will go for ever…..    “Pain is inevitable. Suffering is optional.”
I know I am doing something about it, taking one more step, trying to win the war, but until then I just don’t fell
like fighting, struggling, day in day out with my “head”
This is not a cry for help (and it is not meant in an arrogant way that I don’t need your help or care for it)
I have it with almost over protective, over supportive wife and 2 boys, and I am so grateful for it,
I just simply try to put what I feel and think, and when I see it typed on the screen, or for that
matter posted on CH.com the things seem to reactivate, seem more tolerable, and still
far from solved…… and still feels somewhat better!

Michael
(I am sorry if I seem some what mixed…. I am! )

PS: Surgery date is set for Monday October 27, ’08 in the morning……
and when I get out of the “work shop” I will be a new man,
I will be a - “stimulated man”

Sorry to hear how down this has gotten you. I pray that this surgery will be all that you hope it will be. My last cycle Ueli told me to take another triptan (pill) napatriptan *sp (Amerge is the brand name) each night before I went to bed as a preventative and it stopped my 3-4 hits a night to just one. I asked Prof. Goadsby about it in July but he said the results were mixed on taking a triptan as a preventative, but it worked for me. Hang in there my brother!

Michael - I always heard it, “Pain is inevitable. Joy is optional.” But whatever - it's important for all of us to realize that there's no escaping pain in this world. It's how we deal with it that matters.

Good luck to you on Oct. 27, brother. I will be keeping you in my thoughts.

Will be thinking of you on the 27th Michael.  Hang in there, things will get better.

Beth

Praying for you.  hang on.

Jerry

Count me in too Michael.

I'll be thinking of you too.

Charlie

Good luck on the 27th I truely hope this is the answer for you to kick this demons a$$ for good.  Thanks for keeping us updated.   Phil

Best wishes and good luck on the 27th, Michael.  It's a tough road for sure and we're praying it's a good outcome for you.

Please keep posting, venting, putting your thoughts into words, etc.
We'll hang in there with you.

Wishing you well.....
Jackie

Hey bro...I've read about your quest to be pain free for some time now.  I believe you are on your way.  Fight through the next few weeks and you'll be there.  I wish you luck.  Stay strong

Hi Michael,

I'm sorry I haven't been around lately and written to you more regarding the Occipital Nerve Stimulator Implant.  Since I had mine removed, I have had a LOT going on in my life, in addition to much worsening of the headaches, so I haven't been on the boards as much.

I wanted to wish you well for your surgery on the 27th.  Did you do a trial stimulator at all?  Can't remember if you'd said that.  Most people do a trial before the permanent implant to be sure they can tolerate the stimulation and to determine if it brings them some degree of relief.  The trial stim procedure consists of implanting the leads just below the skin but all the wires are on the outside.  It is left in place for 5-7 days so you can get an accurate picture of the stimulation and its effects on your pain.  I had that in January, and then had the permanent implant in May.  However, I could have had the permanent implant as soon as 4 weeks after the trial.

I did not come off all meds prior to the surgery, but basically none of the meds truly helped the clusters much, if at all.  So I noted a definite change once I got the stimulator.  Once I had it, we were slowly weaning the medications - it was optimal to have the benefit of the meds/stimulator at first, but then as I weaned the medication, I found the stimulator was still doing more for me than the meds ever did.  And now that the stimulator is gone, I realize it just as much - as the headaches have returned to their horrid ways without it.

I wish you the very best with your surgery on the 27th.  I know what it's like to be at the end of your rope and searching for answers.  The stimulator was truly a huge blessing for me, and I hope it is for you as well.  I see my neurosurgeon on Monday and we are going to discuss when I can have a new device implanted.  As of right now, I am still out of work on IV antibiotics, but just for another week or so, then back to work at last.

Best of luck!!  Please let me know what questions you have about the stimulator.  I know I'm not around a lot, but I would be happy to help in any way that I can!!

Take care,
Carrie :)

Michael, all the best with the surgery! I hope that it goes well.

Sanna

Michael:

I will be praying for you and hope that this surgery exceeds all positive expectations.

Ray

Nothing but good wishes, Michael.  I know how difficult all this has been for you, and I hope that the 27th brings you some much-needed relief.

All the best,

George

My thoughts and prayers are with you, and I hope the days pass quickly for you. I know how hard it is, going from using things that work, to nothing at all... It's horrible, because you really do forget what a grind it was on your body before. I wish that you didn't have to go through that.

Maybe if you let them know how hard this is on you, they could see if they could move up the date any sooner? I know with surgery that can be hard to arrange, but they might make an exception and move it. I've had that happen for me in quite a few cases when it looked like nothing could be done for me...

Good luck, and again, I'm sorry you're going through this hell. Remember, the 27th is the silver lining around the cloud! :)

Hi Michael,
I will be thinking of you that day and hoping very very hard that it kicks the Monster's behind right back to hell.
Keep us posted, will ya?

Mazal tov from the Netherlands,
Pascal.

Thank you!

I will up date along as I go, from the pre-tests to the admition
and the tests to see if my immune system is in such a shape
that will allow me to go through the procedure, should be, but
it’s the biggest open question and the reason why it was not done
earlier…..  I would have loved to have it past me…… and look
into a (maybe) brighter horizon……

most of the info and up dates, with pictures and a video of the
procedure will be on my website that is dedicated only for this
procedure only…..  

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Michael

Wow Michael! What an indepth report on Occipital Nerve Stimulation you have amassed on your webpage dedicated to this procedure. I sure hope it works for you. I will follow along as it plays out. Thanks for sharing your webpage. And BTW, remember, you told me in Dallas that if we had the meet and greet in St. Louis, that you would try to be there. I am holding you to that. 8-)

Interesting, that. - Going ahead with ONSI without a trial procedure.  Takes more guts than I would have...!  I'm not at all being critical - just commenting, so please don't take it that way.

I wish you the best of luck, as always.

Take care,
Carrie :)

Lizzie, the way the procedure will go, the implant as well as the battery and receiver unit will be put in,
in one go, to save me from going “under the knife” twice, there will be an “exit” at the lower abdomen
for the “technical” stuff, that is testing the unit, as well as setting the programs in the implanted unit
and adjusting it with the hand held unit, The Neuro surgeon believes, that I will have to stay at the
hospital for 2-3 nights (I refuse to stay longer),and the setting can be done during and after a week
of “living and working” with a USB connection  or what ever connector it is they have out of my lower abdomen.
After the “programming” and the necessary adjustments have been made the “exit socket” will be
removed and “closed” for (I hope) 3-4 years, until battery change is due, the change timing is a
factor of the frequency and programme used, but should be no less then 3 years.
The nice part in all this is that the Neuro department as well as the Neuro surgeons know me, the anstesiolegist,
as well as some if not all the stuff (neuro department) know me, and know my weakness (arrogance and other sins), and my profound hate toward hospitals,  as well as the special needs, the O2 at over 20lt/min. the need for Zomig and most important good food ( I wonder if they will go for junk food-I love junk food as well) and internet excess….
See I am not a hero, I never was, and I do take and ask for comments, suggestions, and any other information, I can learn more, know more, and be as ready as one can be……. if that is possible…..
Michael

hugs to you

Good luck.  I hope that everything goes well for you.

Prayers and vibes coming your way.

Hugs,

Jen

Good luck, Michael!