Hi All,

     I know I should post to the Gettin to Know Ya first, but time may be of the essence here. I'll post the intro later.
     I have had CH for 20 years now. I have tried almost everything. The other day my neuro suggested having a "Cyberknife" procedure done. Not sure how close it is to GKRS, but similar idea - zap the trigeminal nerve where it exits the brain (or mighty close, anyway).
      My question is, has anyone heard of this particular procedure - the Cyberknife, that is - or had it? What, if anything, can you tell me about its effectiveness?
       So far they have done an MRI & a CT scan. They will overlay the 2 images, come up with a plan, and do the procedure. The team will consist of a neurosurgeon, a radiation oncologist, and a physicist. Both my neuro and the neurosurgeon seem to think there will be good results, with limited (if any) side effects.
       Right now I am half-scared (messing around with my brain with radiation) & half-hopeful (the potential that I could experience a "normal" life - whatever that is). Anyone who can, please advise me about this procedure and any potential side effects. If it works, though, it may end 20 years of Hell and help my career tremendously; as I'm sure y'all all know, this $&!@ can be rather disastrous to one's career (as well as family, relationships, etc etc).
        Any advice you can give me will be greatly appreciated!

Thanks guys n gals! 

i have no idea what this is but zap means....cut it?!
if that's the case
i wouldn't go for this and believe me if there was a guarantee surgery solution i would be the first to lay down in the table.But as i hear this...just no!

and what do you mean time may be of the essence here?the way i think of it you should have all the time in the world for making such decisions.no rational approach can be done with clock ticking over the head.action doesn't always bring good results so don't let them push you around as if it has to be done right about now.i mean....come on! :P :-/

black wrote on Jul 13^th, 2010 at 10:12am:

i have no idea what this is but zap means....cut it?! if that's the case i wouldn't go for this and believe me if there was a guarantee surgery solution i would be the first to lay down in the table.But as i hear this...just no! and what do you mean time may be of the essence here?the way i think of it you should have all the time in the world for making such decisions.no rational approach can be done with clock ticking over the head.action doesn't always bring good results so don't let them push you around as if it has to be done right about now.i mean....come on! :P :-/

     "zap"= irradiate it till it stops working; IOW, yes, cutting, but with radiation rather than a knife.
      "time of essence" = they think they can schedule it within a week or two, and once "Obamacare" goes into effect, the insurance company may have even more reason not to pay (still waiting to hear about approval).
       Believe me, I am not considering this lightly, and have been researching this and other similar procedures, such as the "Gamma Knife". I think CKRS & GKRS may use the same type of radiation, but the CK is more accurate and precise.
       What I've learned so far is that, as far as GKRS is concerned, it has helped some folks a lot, and they go long periods without any clusters, and when the clusters do strike, they are less frequent and less severe than previously. It has also NOT helped numerous people. The side effects I saw most from GKRS were loss of sensation on the CH side of the head; facial paralysis the CH side of the head; losing the ability to blink on the CH side of the head; and something I think was called "deafferentiation pain syndrome" (sorry, but I left my notes at home), which is essentially similar to the "phantom limb" syndrome of an amputee. So yes, the side effects can be problematic and permanent. But so is living with The Beast (although, unless I have indeed gone chronic, there are PF respites)....
        I have also contacted a physicist friend of mine who works in the Radiation Oncology department of a local hospital, and am awaiting his response.
        I do realize that the CKRS procedure is relatively new, and there seems to be scant evidence of its effectiveness, as well as scant evidence of its ineffectiveness. IOW, there's little evidence either way.
        But one thing that makes part of me want to do this is that it might actually lead to more knowledge about this disease and this procedure in relation to it, and may lead to a very effective treatment for it. Kind of like donating my body to science & medicine before being dead! The other 75% of me is scared $%#+less.         
        I have been praying constantly (when not working or researching the CKRS) for the LORD to guide me and grant me wisdom in making this decision. Please y'all do the same for me.   

I've not experienced the surgery, but I would shy away from it.  THose who have had the trigeminal nerve cut that I have had contact with have had less than good results.  For one thing they lose all sensation on that side of the face, and in several cases the CH just changes sides.  Before allowing the surgeon to cut (radiate) I would want to know how much experience he has had with this particular surgery and what kind of results his patients have had.  The issue I have with surgeons is their 1st impulse is to cut, but once something is cut it cannot be uncut. 

You are the one who has to make the decision here, but as one who has been blessed with this malady for over 30 years, the last almost 8 chronic I would run from his office as fast as I could run.

Jerry

I too have considered this type of surgery, but as Ray pointed out to me, you wouldnt be able to feel if something gets in your eye, and mine HAVE switched sides once, and the procedure is permanent.  Thanks Ray~ you talked us out of this one, the risks and side effects in our opinion are just not worth it, just slow down and research.

I give it a 50% chance at best. I've read of CH switching sides and a couple years later the nerve regenerates enough for CH to return.

If you're desparate what can we say other than I wouldn't do it at this point, given the current success rate and failure rates.

Don

If you haven't tried the clusterbuster.com methods, and given them an honest try, then you haven't reached the point of going the surgical route. Not even close.

I have to agree with Brew.

He's talking about what has been the most effective preventative treatment for many who have pursued it, and the only thing that has worked for still others. Results have been impressive enough to get Harvard Medical launching trials with it.

Here's a video talk on the subject given by one of our brothers in CH that you could find worth watching:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Plus we really should check with you to see whether you've tried the newer and more effective high liter flow, non rebreather method of O2 use as outlned in the oxygen info link on the left of this page.

I would try every non permanent way to combat the monster
first! then lop off the nerves!   Have you tried every every
everything?  If no Try, If yes, try again in another
combination, Then really think long and hard when free of
pain.  Cause the pain will make you do many/any thing/s to
make it stop.

Hope you find your solution soon!

       I'm sure many of you will condemn me for it, but I have decided to go ahead and have the procedure. I delayed having it done and have thought long and hard about it, but pretty much all else has failed. Granted, I haven't tried the cluster buster methods, but as they are illegal here in the USA (BTW - are they legal anywhere?), and getting caught would mean I lose a professional license I worked long & hard to get, (in spite of The Beast), I have opted to take this radical measure.
       My reasons are as follows:
       1. I have had in the past weeks an increase in the frequency and severity of the attacks;
       2. It seems quite likely that I have gone chronic;
       3. Over the past few weeks, as The Beast keeps getting worse, I have seriously considered suicide, including thinking on the where and how of it, to make them stop. This is the first time ever that my thoughts have been that serious about doing it, and quite frankly it scares the s&!t out of me;
       4. Regardless of what the "experts" say, it actually might work. A 50% chance of success is better than 0%. And even if it's only for a couple of years, it's better than no relief, and better (presumably) than killing oneself;
       5. I desperately want to stop taking loads of meds every day;
       6. Since it won't be too long before "obamacare" really starts to go into effect, this procedure likely may not be covered much longer by my insurance company, for treating "medically refractory cluster headaches". (Obamacare has nothing to do with increased quality of care for patients, or even very much about covering the uninsured; it's really all about cutting healthcare costs.) [side note on this contentious subject - whatever happened to the days when one's neighbors, community, places of worship, civic organizations, etc. would pitch in and help each other out in times of need? Nowadays it seems like it's "screw you, as long as I get mine," in the US. I think that is a terrible tragedy. How refreshing that this site seems to be an exception to that trend.]; 
       7. Believe me, if the CB methods weren't illegal, with the aforementioned potential loss of my livelihood, I'd be looking for some fungi right now! God damn the inane, asinine US "War on Drugs" (at least on the CB ones)! (I am a libertarian and wish the libertarian party were running the federal, state, and local governments (rather than the fools in Congress and the White House, state legislatures and governor's mansions, and city councils and mayoral offices)), then those methods would be legal, and many (if not most) of us could be virtually cured and able to lead a "normal life"! From what I've read over at CB, their methods seem to be highly successful. Sadly, science and medicine generally eschew "anecdotal evidence", because to them, "regular folk" couldn't possibly know what they are doing, and "regular folk" don't give 'em grant money. Not to mention the fact that companies and "government officials" don't make money off of things you can grow for yourself! If there were a study, or something that I could get into right now, where such methods would be legal, and I had immunity from prosecution and the loss of my license, I would try it. But again, losing that license would mean losing my job and the ability to afford the meds, doctors, and such that at least help somewhat.
          Speaking of studies, I read an article where the studies re: CB methods for treating cluster headache aren't actually for coming up with a cure for us, but rather to study their "mechanism of action". I suspect if they figure that out, some pharmaceutical company will create yet another expensive product to treat CH.  >:(
       The procedure is set for this Tuesday. I will report how it goes. Wish me luck, prayers, no awful side effects, etc. And please try to understand why I am taking this path instead of the CB one, and don't condemn me for it. "judge not, lest ye be judged."
        Sorry for writing a freaking book here. Thanks for reading it! Eternal PF days & nights, many thanks, and and may God's blessings be upon you all!!!!      
         

God Bless, Neal!
Here's wishing you wonderful, side effect free, complete and total success!
We'll all be thinking good thoughts at you as you go through this!
Please please keep us up on how you're doing and what's happening with your life!
:)

Neal I do hear you!

suicide is also very permanent, and  illegal too.  Only have
a prob if you don't succeed. "I lose a professional license I
worked long & hard to get" I think suicide will do this too! 
I'm just saying and don't listen to me.   But, before I had
any nerve cut, I would try it go way in the wood and have
fun and by the time they chk your clear not like MJ.  But
your in charge and I know I'm on 14th floor so ez window
jump would do, and lord knows that pain is intense.

But man Try all, even maybe if a tad illegal.  I think if it is a
Medication that helps you stay sane and your not going to
use it all the time just now and then to keep the beast happy. 
Hey in to the woods I would be a going.

Boski,

       If I self-terminated, I wouldn't lose the license - I just would not be able to use it! ;D But your point is well-taken.
       "I would try it go way in the wood and have fun and by the time they chk your clear not like MJ" - I'm not sure I understand what you mean by this?
       Believe me, but for the chance (however negligible) of losing the license and getting thrown in the pen (not to mention an oath I took in regards to that license), I would try it! My profession is not known for its sense of humor or compassion.  :(
       Anyway, I do thank you for your opinion, it is appreciated.       

Good luck, Neal.

Condemn you? Of course not. Your course of treatment is one of the most personal, intimate decisions you make. As long as you have completely educated yourself as to the pros and cons and options, it's your decision to make. We'll be keeping you in our prayers, let us know how it goes for you.

Joe

Things mentioned on clusterbusters don't stay in your
system long. Take a long weekend and a home piss test
with you and you should be good to go.  But I understand
and I'm with you, Kill the beast, sucker is mean!  Pot, takes
30 days to clear your system, most others are gone in
days, is all I'm saying.  Hey a 4 x 6 is not my idea of
pleasure that would be a reason for suicide!

Good luck in your answer, and God speed Neal!

I pray for your PF days!

Boski

No Condemnation here!  Dam I hold my head and scream
like a baby!  :'(

Good luck and my best wishes with you.

Neal wrote on Jul 30^th, 2010 at 9:00am:

Boski,        If I self-terminated, I wouldn't lose the license - I just would not be able to use it! ;D But your point is well-taken.        "I would try it go way in the wood and have fun and by the time they chk your clear not like MJ" - I'm not sure I understand what you mean by this?        Believe me, but for the chance (however negligible) of losing the license and getting thrown in the pen (not to mention an oath I took in regards to that license), I would try it! My profession is not known for its sense of humor or compassion.  :(        Anyway, I do thank you for your opinion, it is appreciated.

          What is your profession?

            Potter

Are RC seeds illegal?

deltadarlin wrote on Jul 30^th, 2010 at 6:21pm:

Are RC seeds illegal?

Not illegal to possess. Illegal to consume.

Hello,

Just got a question, What if it dont work??
I know your hurtin bad.. But you might want to try everything 1st.. This is a very very serious thing, but that doctor is going to get paid reguardless if it stops these clusters or gives you a stutter, or a twitch. But back to my question,
What if it dont work?? Best of luck...

Coach Bill

Potter: I knew i shouldn't said anything about my profession. But since I opened the door, in answer to your question as to my profession, I am an attorney. Passed the Bar exam & got licensed last year. Currently working in a corporate legal department (was working there before passing the Bar). Just not employed there as an attorney at this time. Confusing, isn't it? 

coach_bill wrote on Jul 30^th, 2010 at 10:56pm:

Hello, Just got a question, What if it dont work?? I know your hurtin bad.. But you might want to try everything 1st.. This is a very very serious thing, but that doctor is going to get paid reguardless if it stops these clusters or gives you a stutter, or a twitch. But back to my question, What if it dont work?? Best of luck... Coach Bill

Coach - What if it does work? :-? Not dissing you, I understand where you're coming from. I'm just sayin'. And pretty much every legal method has been tried so far.
"No negative waves, man." ("Oddball" from Kelly's Heroes)
       Well, back to bed, just got nailed and awakened early. Need. More. Sleep.

So who exactly is gonna piss test you?  I'm guessin nobody.  Before I let someone stir my brain with a swizzle stick I would exhaust all of the options offered.

        potter

Oh Potter, ever so eloquent with your words as usual.

Neal, seems scary to me what you're about to undertake, but since you and your doctors have decided it is your best option, best of luck to you. As someone else said, please report back your progress (or perhaps have someone report on your behalf during your recovery).

One thing about this group, we're interested in how others are doing and certainly learning more.

Christy

Potter wrote on Jul 31^st, 2010 at 4:41pm:

So who exactly is gonna piss test you?  I'm guessin nobody.  Before I let someone stir my brain with a swizzle stick I would exhaust all of the options offered.         potter

     You very well may be right. But then again, my employer, per company policy, can drug test me anytime they like, any type of test they like (urine, blood, even CSF), and testing positive for something (or refusing a drug test) is grounds for termination. And in this economy, getting another job is even more difficult than usual. Especially one with benefits as good as this one (the insurance is covering 90% of the cost of the procedure). They may not pay me very much right now, but at least some $ + excellent benefits counts for a lot.

QnHeartMM wrote on Jul 31^st, 2010 at 5:12pm:

Neal, seems scary to me what you're about to undertake, but since you and your doctors have decided it is your best option, best of luck to you. As someone else said, please report back your progress (or perhaps have someone report on your behalf during your recovery). One thing about this group, we're interested in how others are doing and certainly learning more. Christy

       Christy - It scares me too! But this crap is killing me, I'm now getting nailed about 3x/day, I'm utterly exhausted, and I am about to completely LOSE IT!!! (sorry for shouting).
       Everybody - Dont worry, I will be reporting. Just wondering if I should report the results, whether good, bad, or ugly, in this thread, or if I should start a separate thread. Opinions? Bueller? Bueller?
       

Have you looked into occipital nerve stimulation?  It's done by a neurosurgeon and doesn't involve destroying a nerve.  It has some risks involved, but these include post-op infection and more surgical-related complications rather than loss of any permanent function as is associated with what you are planning to do. 

More power to you if you feel you have to go this way, but I agree with all above that it should definitely be a last resort.  I'm a nurse so I get what you are saying about the alternatives (although NOT about drug testing CSF), but still...by the time I went for my nerve stimulator implant I'd been chronic for 5 years.  I had tried everything out there known to man with the exception of the alternatives.

Best of luck if you choose to go through with it...

Carrie

HI Neal

This is just a thought so ignore me if it is just ridiculous
I take it that your employer knows about your problems with CH , if so could you have a conversation with them about trying the cluster busters method ? do you think that they would allow you to try an experimental method of dealing with them before you, as potter so eloquently put it, let someone stir your brain with a swizzle stick .

If you were totally up front about it do you think they might cut you some slack as long as it didn't interfere with your work?

God bless

Nigel

You should know, too, that a second trial is planned at the McLean Hospital at Harvard for either late this year or early next using 2-BOL, a non-hallucinogenic form of LSD which seems to have the same prophylactic properties for CH patients.

Being non-hallucinogenic means that chances are very good for a fast track to approval through the FDA.

To your question......definitely use this same thread. Posting on it will move the topic back to the top and allow those of us with fading memories to refresh on details!

Joe

Headache Boy uk wrote on Aug 1^st, 2010 at 5:27am:

HI Neal This is just a thought so ignore me if it is just ridiculous I take it that your employer knows about your problems with CH , if so could you have a conversation with them about trying the cluster busters method ? do you think that they would allow you to try an experimental method of dealing with them before you, as potter so eloquently put it, let someone stir your brain with a swizzle stick . If you were totally up front about it do you think they might cut you some slack as long as it didn't interfere with your work? God bless Nigel

       Not ridiculous at all. But I really don't think that would go over too well with them. I think being "totally up front about it" would just cause even more problems. :(

Lizzie2 wrote on Aug 1^st, 2010 at 5:04am:

Have you looked into occipital nerve stimulation?  It's done by a neurosurgeon and doesn't involve destroying a nerve.  It has some risks involved, but these include post-op infection and more surgical-related complications rather than loss of any permanent function as is associated with what you are planning to do.  More power to you if you feel you have to go this way, but I agree with all above that it should definitely be a last resort.  I'm a nurse so I get what you are saying about the alternatives (although NOT about drug testing CSF), but still...by the time I went for my nerve stimulator implant I'd been chronic for 5 years.  I had tried everything out there known to man with the exception of the alternatives. Best of luck if you choose to go through with it... Carrie

       I just did some research on ONS and although it looks promising, I'm not sure I could deal with having a device inside me though. :o
       Not to mention that I do martial arts, and I think getting thrown around, slammed on the mats, punched, kicked, etc etc, might mess the thing up. However it's been several months since I've been to class thanks in large measure to The Beast ....
       As to "drug testing CSF", I mean taking Cerebro-Spinal Fluid (via spinal tap) and testing that. If I remember correctly from a "Drugs and Human Behavior" class in college (I minored in Psych), testing the CSF is the most accurate way to test for psychedelics usage and type, and I think the metabolites hang around there for a lot longer than the few days in one's urine and/or blood. Granted that method is, I imagine, expensive, invasive, and highly unlikely to be used in 99.9999999% of cases, but it is possible.
       I just wish this @&$! Would STOP already!!!!!         

Brew wrote on Aug 1^st, 2010 at 8:19am:

You should know, too, that a second trial is planned at the McLean Hospital at Harvard for either late this year or early next using 2-BOL, a non-hallucinogenic form of LSD which seems to have the same prophylactic properties for CH patients. Being non-hallucinogenic means that chances are very good for a fast track to approval through the FDA.

       They had something on tv a while back about psychedelics, and mentioned the "bromo" for CH. I think it was on Nat. Geo. I watched the whole thing to see if they mentioned psychedelics for treating CH, but they merely glossed over that part and most of the show was about "hippies" and recreational drug use.
       As to the FDA, I didn't know they "fast-tracked" anything. I think the average time between a company actually creating a drug and its being approved by the FDA is somewhere around 8-10 years.  >:(

Neal wrote on Aug 1^st, 2010 at 7:17pm:

They had something on tv a while back about psychedelics, and mentioned the "bromo" for CH. I think it was on Nat. Geo. I watched the whole thing to see if they mentioned psychedelics for treating CH, but they merely glossed over that part and most of the show was about "hippies" and recreational drug use.        As to the FDA, I didn't know they "fast-tracked" anything. I think the average time between a company actually creating a drug and its being approved by the FDA is somewhere around 8-10 years.  >:(

That's exactly what I'm talking about - 2-Bromo LSD, or 2-BOL.

Do a Google search on "Orphan Drugs" or "Orphan Drug Law." The hope is to get this through under this status.

CKRS Report Part I - Preliminaries

     1. The day before the procedure, I am to start a Medrol (methylprednisolone) "dosepak". This is for any "swelling" that may occur as a result of the surgery. It will be taken in gradually lowering doses for a total of 6 days. (My past experience with steroids has been that they can virtually eliminate the CH for a few days to a week or 2, but then The Beast comes back with a vengeance, so any quick relief may be a "false positive".)
     2. An hour before the procedure, I am to take a single Ativan (lorazepam), 1 mg.
     3. It may be at least 2-4 weeks before the trigeminal nerve root is sufficiently "dead" to provide the advertised relief.

Brew wrote on Aug 1^st, 2010 at 7:28pm:

Neal wrote on Aug 1st, 2010 at 7:17pm:        They had something on tv a while back about psychedelics, and mentioned the "bromo" for CH. I think it was on Nat. Geo. I watched the whole thing to see if they mentioned psychedelics for treating CH, but they merely glossed over that part and most of the show was about "hippies" and recreational drug use.        As to the FDA, I didn't know they "fast-tracked" anything. I think the average time between a company actually creating a drug and its being approved by the FDA is somewhere around 8-10 years.  >:( That's exactly what I'm talking about - 2-Bromo LSD, or 2-BOL. Do a Google search on "Orphan Drugs" or "Orphan Drug Law." The hope is to get this through under this status.

      Interesting. I just did a little research and found that they had a hearing/public comment just a little while ago. Although the hearing has passed, they will still accept public comments. See the last sentence of the second paragraph of this document: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
      All you clusterbusters should comment!

Neal wrote on Aug 1^st, 2010 at 7:52pm:

That's exactly what I'm talking about - 2-Bromo LSD, or 2-BOL. Do a Google search on "Orphan Drugs" or "Orphan Drug Law." The hope is to get this through under this status.       Interesting. I just did a little research and found that they had a hearing/public comment just a little while ago. Although the hearing has passed, they will still accept public comments. See the last sentence of the second paragraph of this document: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE       All you clusterbusters should comment!

Done. Months ago.

Just the bar! Eat the seeds!  Shrooom, see if it works!

If not! then let them at it.  But try,  Do they stand at the
door with a cup?  Don't think so!  Man more guys in your
profession are druggies than you know!  think about it,
what if they cut the smart part and your a dope like me
forever!   :D 

Maybe hope for me one day when I get off dope-o-max!

Peace,

Boski

It's your brain and you only have one.  And I would be
afraid of a reboot like that. But you have Brass ones man!

In no way am I making light of it!  But just trying to make
my point hope I didn't offend any one.

Prayers are with you, sir. Let us know how you make out. God bless! lance

Brew wrote on Aug 1^st, 2010 at 8:19am:

You should know, too, that a second trial is planned at the McLean Hospital at Harvard for either late this year or early next using 2-BOL, a non-hallucinogenic form of LSD which seems to have the same prophylactic properties for CH patients. Being non-hallucinogenic means that chances are very good for a fast track to approval through the FDA.

Brew,

       Just in case it doesn't work, would you please post or PM me the information so that I could apply for a spot? It would be greatly appreciated!

Thanks and eternal PF days & nights to you, sir! 

       Well, tomorrrow's the day. 9 AM CST.
       If I post anything really loopy or over-the-top tomorrow, chalk it up to the Ativan! Never had it before but I am told it makes one "really loose and goofy," per a nurse friend of mine.
       But I do intend to make a report sometime tomorrow (probably mid to late afternoon).
       I'd like to thank everyone for the advice, kind words, prayers, thoughts, etc. that you all have offered. It is greatly appreciated, and may God (or whatever deity(-ies), if any, you worship) bless you for it!

O.K. sport, you tried Oxygen at 11lpm.  How's bout kicking it up to 25lpm. Can't hurt.

         Potter

Neal wrote on Jul 30^th, 2010 at 9:00am:

not to mention an oath I took in regards to that license

out of all the reasons you gave for not busting thats the one i can't talk you out of. i once asked chuck why he didn't try busting and he told me that he made a promise to his daughter that he would not do illegal drugs. i respect that.

neal i skeptical about surgery but you if you sincerely think this is your only option i wish you the best of luck. please keep us updated :)

edited to add: yeah how 25 lpm? oxygen isnt illegal

Take a bit of time before you jump in the deep end, give the Oxygen at a high flow rate a chance.

                     Potter

Good Luck!
I'll be thinking good thoughts to you tomorrow!
:)

Hey Neal:

Fingers, toes and every hair on my head crossed for you!

Good Luck To You Man and All The Best! 

Peace,

Boski

Hi Neal in May of 2002 I went to the Mayo clinnic in Rochester Mn. and had my right side trigeminal nerve cut. I only got a little over 4 months relief. I feel nothing on right side of my face. One of the hardest things after surgery was when eating I keept biting inside my cheek and tongue & worst I have had 5 eye infection because you dont know if something was in it til too late. Once it was so bad after a couple of weeks trying meds they ended up sewing my eye lid shut except for a tiny bit to put in drops. I had a follow up in June of 2004 and out of the 13 surgerys like mine (done from 1995-2003)  I was told (2) complete relief & it has worked for them for over 3 years, (3) 50-60 % better, (3) 75-80% better, and like me (5) minor relief but not lasting over 6 months. If you do go and get it done I wish you the very best. Terry

Neal,

My friend, please don't take any of our concern as criticism.  I am one also who has not taken any of the CB alternatives, as badly as I have wanted to, for legal reasons.  I have been chronic for almost 8 yrs though, so I know your fears, but I've found relief with Kudzu and O2 @ 25lpm. 

Our purpose here at CH.com is support and advice.  We will not attack anyone for a personal decision.  The only ones we will go after are those who try to convince others to do something stupid.  Personal choices may be disagreed with, but while we don't necessarily agree with it it doesn't affect anyone else, so we don't attack.  Sometimes we try a little shock therapy to get one's attention, but that is the only purpose for it.

You should be in the procedure about now, and I've been praying for you for the last while, and I'll continue.

Jerry

WOW Neal must be a miracle recovery. Ten fifty nine and you're back online.  Brain surgery must be easier than I thought.

            Potter

Potter wrote on Aug 3^rd, 2010 at 1:54pm:

WOW Neal must be a miracle recovery. Ten fifty nine and you're back online.  Brain surgery must be easier than I thought.             Potter

Got home around 11:00 AM CST. Will post a report shortly (as soon as I can type it).

CKRS Report Part II - The Procedure

       I woke up, took my morning dose of the medrol. An hour before the procedure, I took the Ativan. The we went off to the CyberKnife facility. I arrived there about 8:45 AM CST.
       Since I had already had the MRI, CT scan, and had the mask already fitted, everything was ready and I was on the table right around 9:00.
        I got on the table, they fitted the mask on,  put some relatively loose-fitting straps on my arms and ankles down and they put the music in that I had brought (Bach's Brandenburg Concertos - the kind of music I expect is playing when you get to Heaven (but I digress)). They also gave me a foam ring thing to hold onto about mid-belly, also to help keep me from moving around. They then left the room and shut the humongous Cheyenne Mountain NORAD-type looking door.
        So they start the procedure.  I just lay there and the machine moves around here and there from time to time, stops for a while now and again and doses me with Gamma radiation. Did not feel a thing. After around an hour, they come in and take the mask off and get me off the table. My face looked like it had been in a waffle iron afterwards due to the net-type form of the mask! Now the pressure marks are gone. They tell me the neurosurgeon's office will send me a letter about the procedure and will also set up a follow up visit with him "in about a month." Remember, they said it would probably take several weeks for the nerve root to be deadened and for the full effects to be realized.
       Right now I don't feel anything different. As a matter of fact, The Beast came calling about an hour ago, and he was pissed! I suspect this is more due to the steroids than anything else.
        But anyway I hope this works and doesn't have any deleterious effects, as some of you have indicated. And I sure as hell hope The Beast doesn't do a switcheroo and start on my right side sometime in the future. In that event, and if we substitute "d" for "f", I would be "well and truly ducked", as the neurosurgeon said they can only do this once. However, I am aware of one
gentleman who had both sides done with the Gamma Knife (one side twice), because the first time it didn't work, the second time it did on that side, then The Beast switched sides. He told the neurologist and neurosurgeon that he would blow his brains out if they didn't do it (I think he even took the weapon to the neurosurgeon's office and said he would do it right there). They acquiesced to his demand. I guess an in-office suicide would not make for good press!
       The deed is done, and only time will tell if it works.
       I do want to say thanks to all of you for all for your support, and also to those who gave well-reasoned arguments against the procedure.
       I will keep you guys n gals posted.
       PF days & nights to all!
          

And we will keep you in our prayers, here's hoping to success and pain free times in your future!

Joe

Guiseppi wrote on Aug 3^rd, 2010 at 3:41pm:

And we will keep you in our prayers, here's hoping to success and pain free times in your future! Joe

Ditto!!!!!!
:)

What Joe said said it for all of us.  That is what we all want for each other.  We just disagree on the best way to get there sometimes. :)

Jerry

Wow, that is faster than imitrex!  I hope your well kind sir!

PF & Cluster Free!

Hey, I'm down to 2 or 3 a day now, down from 7-8. I'm
feeling good, can get a few hrs sleep here and there.

Get Well Soon,
Boski

CKRS Report Part III- Post Operative Day 1 - Report #1

       Well yesterday I had a total of 4 attacks, the last 2 of which were in the 8-10 range. Felt like crap (well, more crappy than usual) after the 3rd one. The first one, a relative lightweight to the others,  was pre-surgery, around 4:30/5:00 am. Second was somewhere around 12:00-1:00 pm. Third was around 6:00 pm. Fourth was around 11:45 pm. The 6 pm one was the worst of the lot.
       Today so far I have not noticed any loss of sensation, blink reflex, etc. Nailed again in the 4:30/5:00 am time range this morning.
        Considering the actual overall increase in number of attacks and of the pain levels, I am hoping The Beast is in his death throes! Let's hope the Gamma radiation did not turn The Beast from a Bruce Banner to The Incredible Hulk! "Beast smash puny Neal! Rrarr!"      

Oh, Dam!  Might just be the stiring of the brain!  Hang in!
I hope you feel better buddy! 

Keep a good out look!  It will get better!  It will!

Peace,
Boski

Neal, you using any abortives? Did the surgery preclude you from 02, trex etc? Hoping it is the beasts last hurrah before he is smitten!

Joe

Quote:

so far I have not noticed any loss of sensation, blink reflex, etc.

Is the loss of a blink reflex a real possibilty???   [smiley=shocked.gif]   I have to say, I never considered that if one side of your head was numb...that would naturally occur.  Wow.

Please keep us posted Neal.

Guiseppi wrote on Aug 4^th, 2010 at 1:58pm:

Neal, you using any abortives? Did the surgery preclude you from 02, trex etc? Hoping it is the beasts last hurrah before he is smitten! Joe

Oh hell yeah I am! Trex + 5-10 mg Lortab. Lortab for after the trex, cause although the trex gets rid of the "main" headache, it just feels like I've 1/2 my face ripped off once it's worked. Lortab is not by itself a good abortive, as I think most of us know. Sadly O2 hasn't been the wonder for me it has been for a lot of you guys n gals.
     My stockpile of trex is starting to run low, though. I learned a few years ago it was better to stockpile the trex due to the chintzy nature of the insurance co. Only covers 8 injections (4 kits) per month. So I go ahead and get the 8 shots/month whether in cycle or not. Around $850 or so for 8 shots when I'd already gotten the monthly allotment adds up to some serious $$$!
      

Linda_Howell wrote on Aug 4^th, 2010 at 8:24pm:

Quote: so far I have not noticed any loss of sensation, blink reflex, etc. Is the loss of a blink reflex a real possibilty???   [smiley=shocked.gif]

     Not per the docs - but one or more people in this thread mentioned it.

Neal,

You've said a couple of times the O2 does not work for you.  There is no criticism intended here, but my question is at what flow rate have you tried, and with what mask?  I found it not to work for me several years ago, but when I got the O2ptimask and went to 25 L/min I got good results.  You might want to check out Batch's post concerning PH and O2 use.  I know it doesn't work for everyone, but most of us have been able to do very well with it. 

Jerry

My 2¢ Mask is well worth the $27.50!

Hey Imitrex is way high $$$ we all know that and now I know
why they only give us the 1 box a month limit. The smart
ones at GSK say imitrex is not a daily use drug and that is
why we suffer in pain.  So, yes in cycle or out, get your
imitrex every month and you should have enough when you need it.

Callico wrote on Aug 4^th, 2010 at 10:32pm:

Neal, You've said a couple of times the O2 does not work for you.  There is no criticism intended here, but my question is at what flow rate have you tried, and with what mask?  I found it not to work for me several years ago, but when I got the O2ptimask and went to 25 L/min I got good results.  You might want to check out Batch's post concerning PH and O2 use.  I know it doesn't work for everyone, but most of us have been able to do very well with it.  Jerry

       At first I was prescribed 10-15 LPM. During that time, 11 LPM seemed to work best (but it only worked about 1/3 of the time. So I later tried up to 30 LPM (they had to order a special regulator for that high a rate, and it took some doing to get them to do it), with similar results, i.e., working less often than I desired. Mask type in both cases was a non-rebreather.
       Just searched for and found Batch's post about the pH method. Kinda just skimmed it over, but it looks interesting. I may give it a try in the near future.
       But I am trying to hold off on those things so that my reports of the CKRS procedure won't be skewed by other attempts. I am trying to let there be a more accurate an honest report of the results. Donating my body to science and all that, you know. But if it doesn't kill The Beast soon (in
the next few weeks), other options will be considered!
        Next report coming soon .... 

CKRS Report Part III - Post-Operative Day 1 - Report #2

       Well yesterday I had a total of only 3 attacks. Last one was around 9:45 pm CST. That last one was the worst of the bunch, but not as bad as the 6pm one the previous day (the day of the procedure). My thinking on this is that maybe the Medrol, a steroid, is treating me (sort of) ike Prednisone used to. In the past Pred would, after a few days, virtuallly eliminate the attacks for maybe a week or 2, and then The Beast would come back with a vengeance. Perhaps I am having a similar effect here. So I won't be saying I'm cured if all of a sudden the attacks stop - I'll wait a couple of weeks after such cessation of cluster activity before I come to that conclusion, due to the introduction of the steroids into the mix.   
       I still cannot tell any losss of sensation from the procedure.

CKRS Report Part III -Post-Operative Day 2 - Report # 1

       Well so far today I have had one attack, around 4:30 - 5:00 AM CST. Worse than the last one yesterday (9:45 pm). Feel like crap, but we all have that effect after an attack.
       Still no loss of sensation.

Good luck Neal.  I hope it works for you. Keep the reports coming.

Do keep the updates coming Neal, still praying for complete success!

Joe

Medrol IS prednisone.

CKRS Report Part III-Post-Operative Day 2 - Report Number 2

       Well, I had another attack at approximately 10:45 PM CST last night. Also experienced some "shadows" yesterday, but shadows are easier to deal with than full-blown attacks. But that's 2 attacks instead of 4. Not quite as bad as the others, but still pretty bad. 2 attacks in a day is a lot better than 4!

CKRS Report Part III - Post-Operative Day 3 - Report # 1

      Still had my 4:30-5:00 AM CST visit. Not quite as bad, though. Having some very mild shadows as I write this.
       I still cannot discern any change in sensation in my face. FYI - the methodology I have been using for this is that a) I test both sides by sticking (gently!) a pin on various spots on each side of my face, and b) I also run the end of a pen across parts of my face as well.

Brew wrote on Aug 5^th, 2010 at 10:38pm:

Medrol IS prednisone.

     Not exactly. The chemical formula for prednisone is C₂₁H₂₆O₅; while the chemical formula for medrol (methylprednisolone) is C₂₂H₃₀O₅. Only a few atoms' worth of difference, but still different. 

Neal wrote on Aug 6^th, 2010 at 11:59am:

Not exactly. The chemical formula for prednisone is C21H26O5; while the chemical formula for medrol (methylprednisolone) is C22H30O5. Only a few atoms' worth of difference, but still different.

Okay, I'll give you that.

Prednisone vs Methlyprednisolone...  They're both potent  corticosteroids with methylprednisolone the more potent of the two by 20%.  According to the corticosteroid converter at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE you can replace a 25mg dose of prednisone with a 20mg dose of methylprednisolone.

My question to Neal is this...  If a potent corticosteriod like methylprednisolone, which usually prevents cluster headaches better than 60% of the time for most of us isn't working and the cyberknife radiosurgery has had less than desired efficacy... how long are your cluster headaches lasting and would an average time of 7 minutes to abort them to a pain free state with oxygen therapy at flow rates that support hyperventilation provide enough incentive to give it a try?

Take care,

V/R, Batch

CKRS Report Part III - Post-Operative Day 3- Report # 2

     Other than the previously mentioned early morning visit, I only had shadows off and on during the day.

CKRS Report Part III- Post-Operative Day 4 -Report #1

     Got hit around 12:45 am CST. Used Imitrex. Bad, but not as bad as some of the others. Also got hit by what has become The Beast's favorite time to play with me lately, around 4:30- 5:00 am CST. Took more Imitrex. Fairly consistent "shadows", easily dealt with with Lortab 5mg.
     Took the last of the Medrol today. Hopefully it won't treat me like prednisone used to - temporary relief then an increase in frequency and severity of attacks. Hoping the trigeminal nerve root will give way to the Gamma radiation beamed at it for about an hour during the procedure.
     Still no noticeable loss of sensation in my face and head.

Batch wrote on Aug 7^th, 2010 at 1:20pm:

My question to Neal is this...  If a potent corticosteriod like methylprednisolone, which usually prevents cluster headaches better than 60% of the time for most of us isn't working and the cyberknife radiosurgery has had less than desired efficacy... how long are your cluster headaches lasting and would an average time of 7 minutes to abort them to a pain free state with oxygen therapy at flow rates that support hyperventilation provide enough incentive to give it a try? Take care, V/R, Batch

Batch,

     The clusters last 15-20 minutes thanks to the Imitrex. Left untreated (which I don't do anymore!) the average length of a CH for me is about 2 hours. Shortest ever was about 1 hour; longest was about 8 hours at K10 level. That was early on in my journey with The Beast and before Imitrex was available in the US. If I had had a gun on my bedside table then, I would be long gone from this life.
     But as to the O2, it's never been terribly effective for me, even with a flow rate of 30 LPM and a non-rebreather mask. And the O2 suppliers would keep on billing even after I gave all the stuff back. 2 suppliers, both kept billing me for nothing. I have read about a flow rate of up to 60 LPM with the "O2ptimask" (spelling?) being effective.
     But the docs said it would probably be 2-4 weeks before the CKRS fully works, and could take up to 6. So I am waiting to see if that is the case. If this mess continues after that, though, I may try the super-duper high flow rate O2.
     For the sake of this procedure, and giving it time to work as I was told, I am unwilling to change anything at this point.
     But Batch, thanks for the input and support. And thanks to all the rest of you for your input and support. It is greatly appreciated! I don't know what I would do without you guys n gals! I was a "lurker" here for many years before becoming a member, and surely would be dead without this wonderful place and all its wonderful people.

Batch wrote on Aug 7^th, 2010 at 1:20pm:

Prednisone vs Methlyprednisolone...  They're both potent  corticosteroids with methylprednisolone the more potent of the two by 20%.  According to the corticosteroid converter at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE you can replace a 25mg dose of prednisone with a 20mg dose of methylprednisolone. My question to Neal is this...  If a potent corticosteriod like methylprednisolone, which usually prevents cluster headaches better than 60% of the time for most of us isn't working and the cyberknife radiosurgery has had less than desired efficacy... how long are your cluster headaches lasting and would an average time of 7 minutes to abort them to a pain free state with oxygen therapy at flow rates that support hyperventilation provide enough incentive to give it a try? Take care, V/R, Batch

Yeah.  What Batch said. 

         Potter

Neal,

I'm a bit confused as to your logic on trying the O2.  You're aborting them now with imitrex...  It's no different if you abort them with O2 in terms of determining the success of the cyberknife radiosurgery.  O2 doesn't prevent attacks, so you'd still know if you were having them.  Now, if you weren't aborting them at all and just seeing what happened, then I agree that using O2 would be skewing the results.  But since you're already using something to abort...

Also, glad you haven't had loss of sensation so far.  I'm going to wager a guess you'll have to wait the 2-6 weeks to be sure this isn't going to happen either!!  I hope it doesn't though!!!

PF wishes and thanks for sharing your story with us,
Carrie :)

Lizzie2 wrote on Aug 7^th, 2010 at 3:21pm:

Neal, I'm a bit confused as to your logic on trying the O2.  You're aborting them now with imitrex...  It's no different if you abort them with O2 in terms of determining the success of the cyberknife radiosurgery.  O2 doesn't prevent attacks, so you'd still know if you were having them.  Now, if you weren't aborting them at all and just seeing what happened, then I agree that using O2 would be skewing the results.  But since you're already using something to abort...

       That's a very good point. Maybe all the radiation fried my logic center! But seriously though, I don't want to go through all the mess with getting another O2 prescription, getting a regulator with a high enough O2 flow, the DME people's nefarious billing practices, etc. But in the end I may go back to that, if all he rads didn't "cut it"  :D


Quote:

Also, glad you haven't had loss of sensation so far.  I'm going to wager a guess you'll have to wait the 2-6 weeks to be sure this isn't going to happen either!!  I hope it doesn't though!!!

       Me too!


Quote:

PF wishes and thanks for sharing your story with us, Carrie :)

   Thanks for being here.  :)

Hey Neal:

Yeah, funny nuthin seems to work right away!   :D
Try The O2 it's cheaper than the Imitrex and you can use
that too!

Peace,

Boski

Feel better neal,  Hey put the gun away! 

CKRS Report Part III - Post-Operative Day 5 - Report #1

       Well so far today, I have had 2 bouts with The Beast. One was around 2:00 am CST. The other one was the same old stubborn 4:30-5:00 am visit.
        Otherwise, shadows off and on all day so far.
         Still can't tell any loss in sensation.
       I start back to work tomorrow, so any reports during the week will be either early am or later pm. Not looking forward to seeing my email inbox or the stack of crap on my desk! I guess it's job security, though!
        This cycle started with one hit per day, then two, then four, now back to two it seems. Waiting for ZERO, and an end to months and months of this crap!!
       PFDAN to all! 

Praying right with you that the end is near neal!

Joe

Thinking of you, Neal!
Keep us informed!
:)

Keeping fingers crossed that all goes well for you, Neal.

Thanks, by the way, for your continuing reports on your progress.  This sort of information is valuable to the community and all the members here, and it is much appreciated.

Best wishes,

George

George wrote on Aug 8^th, 2010 at 9:44pm:

Thanks, by the way, for your continuing reports on your progress.  This sort of information is valuable to the community and all the members here, and it is much appreciated.

     Thanks George! Continuing reports are not a problem, and it's my intention to keep making them until we know if this procedure was successful or not. Nobody cares more about  clusterheads and finding things that work than clusterheads!   
      That said, if six weeks go by and they haven't stopped, I will assume that the procedure was a failure, make a post to that effect, and stop posting reports. After all, the neurosurgeon and the neurologist both said that it would probably take 2 to 4 weeks, and maybe as many as 6, for this procedure to be effective.
      "The wai-ai-ting is the hard-est part." - Tom Petty  :)
      

CKRS Report Part III -Post-Operative Day 6 -Report # 1

       I had my usual early morning attack, c. 4:30-5:00 am. If I had any others while sleeping, I wasn't awakened by it/them.
       Some shadows off and on during the day.
       Still no change in facial sensation.
        However, I am for some reason absolutely exhausted and my nerves are somewhat frayed. Also rather depressed today. Maybe they irradiated my energy, patience, and joy centers instead of the stupid tri-G nerve.
       Developed a real bad toothache about mid-day today. From what my dentist told me a while back, I may be getting a root canal of that tooth. Oh f-ing joy! Will be seeing the dentist tomorrow afternoon after a meeting at work. @&/:#%;!!!!!!
       I need some good luck instead of this incessant parade of horribles! Sorry for the bad attitude!

Hnag in there neal. :'(

Joe

Hay Neal

You can shout , growl and moan as much as you like here too. Helps to get that stuff off your chest , and we don't mined  ;)

thoughts and prayers coming your way.

God bless

Nigel

CKRS Report Part III - Post-operative Day 7- Report # 1

       Well, I had the usual 4:30-5:00 am visit today. Other than that, shadows off and on, until after some dental work (see below).
        Still no noticeable change in facial sensation.
       Like I said in yesterday's post, I went to the dentist today regarding some extreme tooth pain. Had to get a root canal. One thing I learned from that is that next to CH, root canals are the second worst form of pain. At least for me so far in this life. Tooth was infected, when they "breached" the infected part, a stinky & foul-tasting pus issued forth. Ugh!
        After the root canal, I came home and made the monumental error of taking a nap. I thought I was just going to be lying down for a little while, but that was not to be the case. Woke up about 10:00 pm CST with what I believe was a "bonus" CH. I really should've known better! Oh well.

since very few of us know it might be nice if you hung out to advise another clusterhead who may be considering the same kinda treatment.  :)

-johnny- wrote on Aug 11^th, 2010 at 1:30am:

since very few of us know it might be nice if you hung out to advise another clusterhead who may be considering the same kinda treatment.  :)

          No problem. I'd be happy to answer any questions anyone may have, if there's something that I did not cover in any of my reports. If anyone would rather ask me privately, feel free to PM me.
         So far, I've only had the procedure, and it has yet to be effective. But the docs did say it would be at least a couple of weeks, and maybe up to 6 weeks, before we know if it really worked. I hope it works, and I hope it's within the 2 weeks, rather than having to wait for 6 weeks! If six weeks go by and still no relief, though, I will assume the procedure was a failure and stop posting, and consider other options. The six full post-op weeks will be up on September 14th.
         But as you are already aware, I'm sure, I've been posting daily post-op reports. Part I was about the preliminary things to get ready for the procedure, Part II was about the procedure itself, and Part III are daily reports as to my observations, any clusters along the way, etc., including the occasional bitching & moaning about things in general.
       But as much help and support this site and its wonderful members have been to me over the years, I figure I may as well "give back to the community". I was a "lurker" here for many years before joining and becoming a member. But without this site and the supportive atmosphere, I very well may have "checked out" by now! :)
       But again, if anyone has any questions, either post them here on this thread or PM me and I will answer when I can. My posts will usually be either in the early morning or in the evening after work (usually after work).
       Well, back to bed, gotta go to work tomorrow! PFDAN to all! Clusters suck!

Quote:

One thing I learned from that is that next to CH, root canals are the second worst form of pain.

Did you not have a local anesthetic during the procedure? I agree that keeping your mouth open for an hour or more can be a pain in the ass, but second worst form of pain?

Brew wrote on Aug 11^th, 2010 at 7:09am:

Quote: One thing I learned from that is that next to CH, root canals are the second worst form of pain. Did you not have a local anesthetic during the procedure? I agree that keeping your mouth open for an hour or more can be a pain in the ass, but second worst form of pain?

       Yep. At least for this particular root canal. Lots of local anesthetic. 2 or 3 novocain injections to start with, another 1 or 2 about halfway through, and then another one near the end. The dentist said it was so infected that if I had waited another day or two, he probably couldn't have deadened it at all! Yikes! I'd never heard of such a thing, but after yesterday I believe him! Almost the whole right side of my face was numb, but the tooth - well, not so much! There were several moments during the procedure when I about came completely out of the dental chair during the procedure, especially when he really got way up in there! I had visions of the movie Marathon Man - it wouldn't have surprised me if the dentist had asked repeatedly, "Is it safe?" I've only had a root canal once before, and it was nothing as painful as this one.
      But so far, yes, that is the second worst pain I've felt in my 40-something years, second only to CH! The moral of my dental adventure is - if your tooth hurts, don't wait until it's unbearable, go immediately to the dentist; otherwise it may get so infected that Novocain isn't as effective as it should be (or at all)!
      Will post the usual CKRS report after I get home from work. Sorry for going so off-topic!

Moral to story don't let an infected tooth wait!

That blows!

Brew,

A toth with a live infection cnnot be deadened to any extent.  Been there, and I agree with Neal on the pain level.  Much worse than a broken bone or anything else I've suffered.

Jerry

It's my understanding that when the dentist gives a local anesthetic, it is applied to a nerve branch that will deaden everything behind that point - which is why the whole side of your jaw goes numb when they have to work in the back of your mouth.

I understand all too well how the pH of an infected, abscessed area will neutralize a local anesthetic (don't ask for details - too gross and embarrassing), but why would they even give a local if it was known that it wouldn't work? The numbing agent is, from what I understood, applied further up the nerve from where the tooth nerve joins the branch.

I've had two root canals and I felt no pain except the prick of the needle going in to numb it up.

I've had three Bill,  of which two were virtually painless because the Dr had time to put in a temporary filling with anti biotic in it to kill the infection first.  The first one I had was while in college and I had to have it done over Christmas vacation, so it had o be done while the nerves were hot.  He used 9 shots of Novocaine (three doses) and then went on with the procedure.  He held myhead in the crook of his arm to hold me still enough to work on it.  He said he would never do another while the infection was still there, and I told him he didn't have to worry.  He would never do another on me.  He didn't!

Jerry

Everyone is right!

There are ones that are pain free!  Like mine!  lucky me!!!

But yes!  If badly infected it hurts like a mother and a half!
I don't know the reason but my wife had one done while
infected not to the point like Neal had but bad.  Dentist said
same thing.   Also have had friends that have had bad ones
tell me same story, must be something to it.

I had no pain or swelling when they pulled my wisdom teeth
but boy was I surprised when they had to bust up the 2
bottom ones.  I had one top one and thought that was
EZ.  Went in to have a lower and upper pulled.  Dentist
asked you want to pull all 3.  Thinking that it was going to
be like the 1 top one I had done!  I say yeah I'm here let's
get it over with.  Big mistake.  But it didn't hurt,  just the
sound of the teeth being broken right next to my ears!  It
was a dam good thing we did all 3. Not sure I would come
back for that again.  Weird sound.

Boski

CKRS Report Part III - Post-operative Day 8 - Report #1

       Once again, had my c. 4:30-5:00 am hit.
        Shadows on & off throughout the day. For the most part, the shadows do seem a little bit less painful. However, I did have one that felt like an attack was about to start, but before I could get my Imitrex injector kit out & ready, it had passed. That was my shortest shadow yet. Less than ten minutes. But like I said, it felt like The Beast was about to pay me a rather unpleasant visit (increasing pain, red eye, "Horner's syndrome", etc) and then it just vanished. Strange.
       I still cannot tell any difference in facial sensation.
       Well, I guess that's all for now. It's just about time for bed -I have an early-morning meeting at work tomorrow and need to get some sleep.

CKRS Report Part III - Post-Operative Day 9- Report #1

       Well, for the first time in months, I woke up feeling halfway decent. Which was good, as I had an early morning meeting at work to get to. If I had the usual visit this morning around 4:30-5:00 am, it did not wake me up and was much milder. Like I say, I woke up feeling better than usual.
      Had some shadows during the morning, but then about 2:20 pm CST, I got nailed with a K8. Put my sticky note "Cluster Headache in progress - PLEASE do not disturb!" on the door to my office, shut the door (thank God I have an office with a door!) took an Imitrex injection, squirmed around in my chair, and pretty soon The Beast had me on the ground about ready to cry. Did my best to be quiet, hoping nobody heard me saying bad words and pleas to the Almighty under my breath. Really wanted to scream & shout but did not. About 2:45 The Beast left me a crumpled mass on the floor. Picked myself up off of the floor and got back to work. Shadows since then.
       I wish the freaking nerve root would go numb or die already! But I've got at least a few more days before that happens, at least according to the docs. Oh well, c'est la vie.

Hey Neal,

That Sucks!  Sorry to hear that, Hope it kicks it soon.

Hope your PF soon,

Boski

Damnit Neal I'm still pulling for success. Wishing you some peace and pain free time soon.

Joe

CKRS Report Part III - Post-Operative Day 10 - Report #1

       Well, I had the usual 4:30-5:00 am attack, but it wasn't as bad as they have been, for the most part (around a K4). I had the occasional shadow during the day, but not too bad - 5mg Lortab & a little while later that was that. Then about 11:15 pm I had a "real" CH (right as I was about to post this report!). Was around a K6. Imitrex & then get in the bed and roll around a bit until it was gone. Crashed.

CKRS Report Part III - Postoperative Day 11 -Report #1

          I seemed to have missed the 4:30-5:00 am visit, but woke up around 7:45 with around a K4, rolled around in bed and fell back asleep. Did not use anything to abort. Did sleep until around 2:00 pm, though. Woke up with a shadow, took some Lortab, that ended the shadow. Having another shadow as I write this, but it's not that bad.
        Also, I have not noticed much of a change in facial sensation, but something does seem to be happening in that regard, albeit sleight.
        It does seem that things are starting to improve with the CH - (keeping my fingers crossed for good luck).

Hope so Neal,  Hope that relief comes soon and swift!

Good luck,

Boski

CKRS Report Part III - Postoperative Day 12

      Had an attack sometime in the morning - about the same as the previous day, no abortive, rolled around, fell back asleep, woke up around 3pm. Other than that, I have had real minor shadows, around a K2, I'd say. Don't want to jinx it, but I do think that things are starting to really improve.  :)
    My face feels about the same as the last report, only a very slight decline in sensation. Not numb, just a little bit less sensitive.

CKRS Report Part III - Postoperative Day 13

      Today has been the best day so far since I had the procedure. A very minor early morning CH, maybe a K2 or K3. Easily ignored.
      Had massive headache around 4:30 pm, but it was not a cluster - I think it most likely was sinus related.
       Around 8:00 pm or so, had around a K3. That's it so far.
       Of course, the past few days begs the question - is the reduction in CH frequency and severity a result of the CyberKnife, or is just the beginning of a spontaneous remission? Either way though, life does seem to be improving.
       So far, no further change in facial sensation.
         :) :) :)

Good to hear Neal!

Keep the reports coming!

Hope You get to the PF place you want to be soon!

Peace,
Boski

Sounds like progress to me Neal, enjoy the PF time!

Joe

How's bout a charitable solution as was suggested in the thread you started and have so conveniently ignored.  Drop a dime on the site,  you'll feel better about yourself.

               Potter

Hey Potter:

Neal's brain is still settling from the surgery!

I'm sure he will come to his cent's soon! He he..

Just mussin with ya neal!  Charity comes from the heart!

Potter he has to pay that Doc.! for the head shake, rattle
and rollin he got! 

Just out joshin with ya all!  Have a PF day all!!!!

Peace,

Boski

Potter wrote on Aug 17^th, 2010 at 11:46am:

How's bout a charitable solution as was suggested in the thread you started and have so conveniently ignored.  Drop a dime on the site,  you'll feel better about yourself.                Potter

Don't worry, I will be donating before too long - been working looong hours lately in addition to having CH's the past few months - but where on ch.com do I donate? Forgive my ignorance, most of my time is spent on the message board lately. Or do you mean joining & donating to OUCH instead? Or can I do both? Thx.

boski wrote on Aug 17^th, 2010 at 6:27pm:

Hey Potter: Neal's brain is still settling from the surgery!

True dat! But like Pooh, I'm a "Bear of Little Brain" - and that was before irradiating my cranium! :D  ;D  :D

CKRS Report Part III - Postoperative Day 14

     Well, woke up feeling fairly OK, until about 6:20 am when I got hit by a K7.5. 'trexed that f@&$er. Since the shot was from my older, expired stuff (going through the old stuff first), it took longer to work, maybe around 30 minutes.
      After that, was OK until around 2:30 or so, when I had a major shadow, around a K3.5. Has settled down since then, but remained fairly constant up until around 9:00 pm or so.
      So I guess the fat lady hasn't sung yet! Oh well, only time will tell.
       Neurosurgeon's office called today, I have a follow-up visit Monday. We'll see what he has to say. Hopefully I will be PF by then? I'll let y'all know what he says.

Scroll all the way to the bottom of this page to donate to the site.

Don

Come on!  He knows how guys! 

Is that what got you to push the button?  Really!

Grow to the shoe size!  Ok I'm at my 11 1/2!
150mg Dope-o-max   :D 

But Really!

Peace,

Boski

Skyhawk5 wrote on Aug 18^th, 2010 at 12:37am:

Scroll all the way to the bottom of this page to donate to the site. Don

Hey You gave $5 bucks like me?

Can hit it again! I did and I gave $10 second time I think
Can't remember with this topomax.

Quote:

Grow to the shoe size!  Ok I'm at my 11 1/2! 150mg Dope-o-max But Really!

Huh?

boski wrote on Aug 18^th, 2010 at 3:17pm:

Come on!  He knows how guys!  Is that what got you to push the button?  Really! Grow to the shoe size!  Ok I'm at my 11 1/2! 150mg Dope-o-max   :D  But Really! Peace, Boski

Colin......................is that you?

                 Potter

Brew wrote on Aug 18^th, 2010 at 4:57pm:

Quote: Grow to the shoe size!  Ok I'm at my 11 1/2! 150mg Dope-o-max But Really! Huh?

Hey Brew:
How you doing?  Hope you and yours are well.

It's part Dope-o-max part bad humor!!!!!!
11 1/2 is my shoe size! Trying to get the guys to lighten up on poor old Neal. 

Where did I blow it at the start?  That is the place I start to
blow it most of the time so I'm told!!!!


If I said something offensive and I just don't see it please
do enlighten me.  Like I have mentioned I am Doppy-to-the
-max and quite sleepless the last few months.  So, Smack
me down if I did or said something way off base. I will
delete or edited it ASAP! 

Peace to you all,

Boski    :D

Quote:

Colin......................is that you?                  Potter

Hey Potter:

No, I'm just playing Potter please don't take any offense.

I love you all here.  Most helpful group ever seen online.

Boski
NYC

boski wrote on Aug 18^th, 2010 at 6:02pm:

Huh?Hey Brew: How you doing?  Hope you and yours are well. It's part Dope-o-max part bad humor!!!!!! 11 1/2 is my shoe size! Trying to get the guys to lighten up on poor old Neal.  Where did I blow it at the start?  That is the place I start to blow it most of the time so I'm told!!!! If I said something offensive and I just don't see it please do enlighten me.  Like I have mentioned I am Doppy-to-the -max and quite sleepless the last few months.  So, Smack me down if I did or said something way off base. I will delete or edited it ASAP!  Peace to you all, Boski    :D

Nothing of the sort. I just had no clue what you were talking about.

Sometimes I haven't a clue either!   ;)

CKRS Report Part III - Postoperative Day 15

      @&$#%!
      Had an early am CH, around a K7.5. Wondering if the brief respite from full-blown CH's, and then a return of them a short while later, is related to the stupid medrol (a corticosteroid) they gave me to take for any swelling that may have occurred  as a result of the CKRS procedure? Before my neurologist stopped giving me Prednisone tapers on account of the risk of avascular necrosis of the hip joint a number of years ago, that's about how the prednisone (another corticosteroid) would generally treat me, i.e., a short period of relief from The Beast and then a return.   
      Then got to to go to the dentist for part 2 of the 3-part root canal before work (build up & crown impression). Was a lot better than part 1. No pain, the novocaine worked as it should this time. The infection must be pretty much cleared up.
      After that, I generally had a pretty good day CH-wise at work, only a K3 shadow around 4 pm or so. Was so busy it was pretty easy to ignore, thank God. 

Neal,

Is it that your thinking about them too much now.  Maybe
it's time to just relax and just work your ass off and see how
life treats you!  Just a thought, I'm just a dope on dope-o-max
so I have no clue!  I hope you get the PF life your looking for!
If not, We are always here to chat with.  I do Understand
you Neal and my hat is off!  I guess it really comes down to
you pulled the dam trigger on something daring. 

I would have eating shrooms myself a dam shitload! Before
letting some dude with a joystick mess in my head.  But,
That's me, and your you.  I am hear with an ear for you
Neal.  Praying for you everyday that you find PF days..

Peace,
Boski

Neal,

Is it time yet?  When are you going to ask your neurologist for a prescription for oxygen therapy?  You're going to kick yourself when you find how effective oxygen therapy can be in making the beast go away very rapidly... 

It will change everything for the better and you'll gain a sense of confidence and control over your quality of life when you start using it that you don't appear to have at this point.

Take care,

V/R, Batch

Ouch, think you might be right and the steroid was giving you a masking effect. :(

I am with Batch on the 02 thing. Do continue your reports on this procedure, this kind of info is valuable to a board like this. But have the 02 at the ready so when you do start getting slammed you don't have to take the full ride.

Still hoping the nerve is going for the academy award in a slow death scene, and will eventually give up the ghost and give you some peace.

Joe

Neal:

Try the O2 man!  What have you got to lose!  Just the PAIN!
Oh, And it's totally LEGAL you can suck it at work, boss won't mind!
Start sucking it early!  Still can use Imitrex and it don't hurt!

Where are you again?  I'm ready to head your way to line
up at Doc's door for your REFUND!!!! If it doesn't work soon. 

Maybe it will, but I think the Doc's just like to fill the rooms
for CASH!!!! sometimes.

Hang in there Neal we are here pulling for you all the time!!!

Boski

CKRS Report Part III - Postoperative Day 16

       Day 16 was pretty good, except for a mild morning hit.
       Very mild shadows during the day, nothing like before.

CKRS Report Part III - Postoperative Day 17

       Started the day with a whale of CH around 4:30 am or so, around a 7.5 on the K scale. Major shadows after that. Until about 11:20 am when The Beast came on strong with a K 9.5. Put my sign on the door so people would keep clear -would have been bad if I had been interrupted. Turned off the overheads and turned a lamp I brought from home down on low light. Found it weird that light was bothering me - but kept the lights on low the rest of the day. Did my best not to cry like a baby, say too many bad words too loudly, etc. Some brief sobs. After about 20-30 minutes (imitrex) kicked its a$$, I pulled myself off the floor,  cracked the the door open, and got back to work.
        For the rest of the day I had almost zero strength/energy & felt like my brain had been pulled out through my left eye. I actually wondered, as I sometimes do during a bad hit, if pulling that eye out would help. Anyway that was "the day in CH" for me.

Batch wrote on Aug 20^th, 2010 at 11:00am:

Is it time yet?

Not yet.

Batch wrote on Aug 20^th, 2010 at 11:00am:

Neal, Is it time yet?  When are you going to ask your neurologist for a prescription for oxygen therapy?  You're going to kick yourself when you find how effective oxygen therapy can be in making the beast go away very rapidly...  It will change everything for the better and you'll gain a sense of confidence and control over your quality of life when you start using it that you don't appear to have at this point. Take care, V/R, Batch

     Just about. Still have yet to try the "arterial pH" technique you suggested. For some reason, every time I go by the store I forget to get the necessary ingredients. I may get out later and do so - actually let me write that down now!
      But please do keep in mind that in the past O₂ didn't work, at flow rates up to c. 25 LPM - that (and receiving monthly bills from the DME supplier long after I had returned all the equipment). I'll be looking for someone other than the other 2 suppliers. DME suppliers, I have heard, are notorious for insurance (especially Medicare) fraud to line their pockets.

Neal:

Get the welders O2 No Bill Later, Just a one time bill and Way
high flow rates!!!  Worth a try Neal!   What are you afraid of?
Dam you seem to be in serious pain like the type that needs
O2.  You must have a welders shop close to you.  Just my
2¢ because you spoke of a recurring bill.  If it doesn't work
return the bottle and your done with them.  No more bill!
I hope your pain subsides soon Neal, it drives us all nuts
when the beast comes for a visit.

Peace,
Boski

boski wrote on Aug 19^th, 2010 at 9:47am:

Neal, I guess it really comes down to you pulled the dam trigger on something daring.

 

       The daring thing would have been to get O₂, a super high-flow regulator, and "O2ptimask", "detox" from the trex & verapamil (why am I even taking verapamil, anyway? Hasn't prevented sh!t! Hmmm ... I may just start tapering off that crap today!) order some spores, grow my own shrooms (or find an "angel" willing to share   :D), and eat a bunch when they were ready. That would've been the daring thing to do, and maybe I would've been back to the good ol' PF days & nights already.


Quote:

I am hear with an ear for you Neal.  Praying for you everyday that you find PF days. Peace, Boski

Thanks B!

You're uncoachable.

          Potter

Potter wrote on Aug 21^st, 2010 at 1:41pm:

You're uncoachable.           Potter

???
How so? A stubborn fool, perhaps, but not sure I understand the "uncoachable" comment - and I flunked mind reading!
Thx!

Potter wrote on Aug 21^st, 2010 at 1:41pm:

You're uncoachable.           Potter

Or he has chosen to take a path that he feels is best for him, regardless of who tries to bully him in a different direction. Having spoken our opinions, it might be polite to allow him to pursue his route.

Joe

Guiseppi wrote on Aug 21^st, 2010 at 3:45pm:

Potter wrote on Aug 21st, 2010 at 1:41pm: You're uncoachable.           Potter Or he has chosen to take a path that he feels is best for him, regardless of who tries to bully him in a different direction. Having spoken our opinions, it might be polite to allow him to pursue his route. Joe

Some times a kick in the butt is worth two kisses on the butt. you keep kissin and I'll keep kickin.

               Potter

                     

Well, He gave it the old college try and dam it takes balls
to go let some geek inside your head.  So, have to give
him some credit!  Ok, now I would have taken the more
chicken route first, but that's me!  Neal, I wouldn't be afraid
of the other routes, if you are.  Just some time you have to
say WTF and do it!  I will try it once a year to see if it keeps
my visitor on vacation.  ;-)  Hey, an excuse to take a low
dose.  WTF Tried once in High School a long time ago, but
if it may help I'm game.  Anything to avoid this MF'er from
knocking on my head is worth a try and from what I
remember, really no side affects after the one big effect.
I'm just tired of the pills, sides and Aborts still feeling pain
so if I have to see some strange shapes or think I saw God
oh well I'll report in about 12 - 18 months on the ride! 

Neal, Good luck, keep reports coming!  And if someone
bothers you too much I think there is a small button
called ignore! 

Have a good weekend,
Boski   ;)

Quote:

...the one big effect.

You haven't been doing your homework. You don't have to take that much of it.

Well it depends, they say. 

:D

Boski

Potter wrote on Aug 21^st, 2010 at 4:48pm:

Guiseppi wrote on Aug 21st, 2010 at 3:45pm: Potter wrote on Aug 21st, 2010 at 1:41pm: You're uncoachable.           Potter Or he has chosen to take a path that he feels is best for him, regardless of who tries to bully him in a different direction. Having spoken our opinions, it might be polite to allow him to pursue his route. Joe Some times a kick in the butt is worth two kisses on the butt. you keep kissin and I'll keep kickin.                Potter

Yeah.....I'll keep postitively encouraging people with CH......you keep going your route.

Joe

Neal try the oxygen at a higher flow rate,  then keep on huffin.  Give it a whack.

              Potter

Potter wrote on Aug 21^st, 2010 at 7:32pm:

Neal try the oxygen at a higher flow rate,  then keep on huffin.  Give it a whack.               Potter

     At the rate I'm going I probably will. I've just compiled a list of local welding supply places, and I expect I'll be giving them a call to see what I can get. I'm about to order one of those O2ptiMask things from Lifegas - the CH store is out of the size that is apparently more for "men". Well let me go place the order!
      Now watch the CKRS procedure make the CH go away after I get all that stuff!

Neal, it's like driving your car to the mechanic. As soon as he gets in the car, rest assured, the noise will stop! ;D

Joe

Guiseppi wrote on Aug 21^st, 2010 at 7:28pm:

Potter wrote on Aug 21st, 2010 at 4:48pm: Guiseppi wrote on Aug 21st, 2010 at 3:45pm: Potter wrote on Aug 21st, 2010 at 1:41pm: You're uncoachable.           Potter Or he has chosen to take a path that he feels is best for him, regardless of who tries to bully him in a different direction. Having spoken our opinions, it might be polite to allow him to pursue his route. Joe Some times a kick in the butt is worth two kisses on the butt. you keep kissin and I'll keep kickin.                Potter                       Yeah.....I'll keep postitively encouraging people with CH......you keep going your route. Joe

      
       "Gentlemen, you can't fight in here this is the War Room!" one of my favorite quotes from Dr. Strangelove.
       But thanks for coming to my defense Joe!
       And generally speaking, positive attracts positive, negative attracts negative (unlike in physics and chemistry). Something Koichi Tohei once said about "ki".

I wouldn't ever fight with Joe because with me it's never personal.  I want nothing more than pfdan for sufferers in the least invasive way.

                  Potter

Quote:

Now watch the CKRS procedure make the CH go away after I get all that stuff!

Then you can give it away and satisfy that altruistic need you have.

CKRS Report Part III - Postoperative Day 18

       Had one in the morning, as usual, but it was mild enough not to wake me up. When I did wake up, my face and eye socket were sore, but it was not so bad.
       About 10:00 pm, I had another one, about a 6-6.5. Used some trex on that one. Better than some of the others lately.

CKRS Report Part III - Postoperative Day 19

       Had another early morning visit, not bad to enough ton wake me up but when I did wake up I knew I had one - sore face and eye socket, etc.
       Other than that, just some reasonably major shadows (around K3.5-4) much of the day, but no trex needed!

CKRS Report Part III - Postoperative Day 20

       Woke up with a sore face, letting me know I had had one, but not enough to wake me up yet again!
       Have had a major shadow since about 4:00 pm today, I'd say around a K3.75, not quite a K4, but livable. I would say I think I'm getting better but we know how that goes - "speak of the Devil & in he walks."
       Also saw the neurosurgeon today. I told him that things had started to improve over the past 2-3 days, he said that was "about on course," and wants to see me again in 4 weeks. He also said that if I don't see enough improvement such that I'm down a "normal headache level," that they could do the thing one more time. He also tested the sensation in my face and was pleased - no problem with the blink reflex, could feel tissue paper on my face, etc. He said that was the goal of using the CyberKnife, that they could reduce the pain to manageable levels without much, if any, loss of facial sensation. This technique is "very precise" he says, and they only targeted the area that causes the pain. Of course, he did say that if they do it again, there may be some loss of facial sensation.
       PS - I started using Batch's lemonade and Citracal Plus arterial pH adjustment method Saturday afternoon, so that may be part of why I'm having some better days. So, Batch, thanks very much for the info, it is greatly appreciated! 

Neal:

Keep, a good out look! 

Ouch, I hope the second time is on the Doc!

Sounds good, Yeah I love the way they say, "Looks good, going as planned" What's he going to say Neal.  Oops!  I think I F'ed up!  I have to go in again, that's going to be another $10,000!  Heck no, never hear that out of his mouth.   

But I'm glad things are on course with things normal on sensation and less pain.

Peace,
Boski   ;)

CKRS Report Part III - Update for Postoperative Day 20

       Damn! Around 11:15 pm had about a K7, 'trexed the bugger. 

boski wrote on Aug 23^rd, 2010 at 10:16pm:

Neal: Keep, a good out look!

     Doing my best, Bos.


Quote:

Ouch, I hope the second time is on the Doc!

     Somehow I doubt it! They gotta pay for their Porsche's & such!


Quote:

Sounds good, Yeah I love the way they say, "Looks good, going as planned" What's he going to say Neal.  Oops!  I think I F'ed up!  I have to go in again, that's going to be another $10,000!  Heck no, never hear that out of his mouth.

     Ain't that the truth!


Quote:

But I'm glad things are on course with things normal on sensation and less pain.

       I just wish it hurry up & work already! And I'd rather not do it again, but I'm in it for the long haul. "In for a penny, in for a pound."

Neal wrote on Aug 24^th, 2010 at 9:18am:

boski wrote on Aug 23rd, 2010 at 10:16pm: Neal: Keep, a good out look!      Doing my best, Bos. Quote: Ouch, I hope the second time is on the Doc!      Somehow I doubt it! They gotta pay for their Porsche's & such! [quote]Sounds good, Yeah I love the way they say, "Looks good, going as planned" What's he going to say Neal.  Oops!  I think I F'ed up!  I have to go in again, that's going to be another $10,000!  Heck no, never hear that out of his mouth.

     Ain't that the truth!


Quote:

But I'm glad things are on course with things normal on sensation and less pain.

       I just wish it hurry up & work already! And I'd rather not do it again, but I'm in it for the long haul. "In for a penny, in for a pound."

[/quote]


God Bless, Neal!!!
Thinking pain free thoughts at you!

And, wouldn't it be so wonderful if medicine was just science and so much less art?

Please hang in there, Neal!!!!

CKRS Report Part III - Postoperative Days 21-26

       Sorry for the long delay in any updates. Just been super-busy at work and needed some "down-time" after getting home anywhere from around 8:00 to 9:00 pm most of the past week.
       Anyway, I don't have the exact dates and times, but over these days listed I have had maybe 4 or 5 "bad" CH's (anywhere from a K6 to a K8), two or three were at work and two were at home late in the evening (between 9 and 11 pm). Was still having my early morning visit each day until maybe this past Friday or Saturday, but I actually slept through them. Some shadows through the days but getting better. Yesterday and today have been quite good with only minor shadows, nothing greater than about a  K2. I think the CKRS procedure is starting to work as planned!  :)
        I attended my first martial arts class in several months tonight, no cluster! I'm going to be sore as heck tomorrow, but it's a good kind of sore, unlike CH! Well, it's way past my bedtime, and I have an early morning meeting tomorrow.
       I'll try to be better about the daily reporting from now on.
       Thanks all for your support!

praying the positives keep piling up Neal....so nice when you can pick back up where you left off on your life!!

Joe

CKRS Report Days 27 & 28

       Well things seem to have certainly improved significantly. Nothing but minor shadows around a K1-2 these past 2 days. I'm actually starting to feel human again! Not quite ready to do a victory dance just yet - I'm all too familiar with how The Beast operates, but still, this is the best I've felt in a looong time!
        Sore as heck from jujutsu last night, but I'll take that over full-blown clusters any day! Aikido class tomorrow night! Hallelujah! It's good to get back to what I love doing!  :)
       And again, thanks to everybody for the support, prayers, and PF vibes! God bless you all!  ::)

Heal, Neal, Heal!

I hope your on your way to recovery!

Peace,

Boski

Hey Neal:

Everything OK?

Just checking in on you.

Boski

Neal,