Greetings all! I posted earlier about the Cyberknife procedure, so this is really my 2nd post.
   But anyway, I have been a CH'er for about 20 years now. I have always looked at this site (and found many interesting things here). But finally I decided to join, mainly to ask the Cyberknife question.
   Going by the thing that tells us what we should do for our first post, I offer the following:
    1. Symptoms - EXCRUCIATING pain in my left eye and temple area when The Beast attacks. Tearing and congestion, too. Cannot sit still. Usually when The Beast is upon me I find myself writhing in agony on the floor (at work or other public places) or my bed (when at home), until the Imitrex injection kicks The Beast's a$$. After that is usually a Lortab 10 to deal with the after-pain, where it just feels like someone has simultaneously pounded on my head with a sledgehammer and ripped the left side of my face off. Before I developed this malady, I could never have imagined that pain that bad could exist! Duration: the shortest one was about an hour; the longest one was 8 hours (pre-Imitrex days, obviously). The average duration of a single attack is about 2 hours (provided I don't kill it with the 'Trex). A typical cycle lasts from 2 to 5 months, but I think I may be goinbg chronic 
   2. How long have I had clusters? 20 years. They started in my last year of college and did not help my GPA at all. Sadly, this was before Imitrex injections were available in the USA. Imitrex injections were a Godsend (albeit an expensive one)!
   3. Am I episodic or chronic? Episodic going on chronic (I think). My neuro, a headache only doctor, says I am the worst case of Episodic CH he has ever seen. Currently this has been going on for several months. Went hrough a "mild" spell for a awhile but The Beast is really cranking up now. Perhaps he senses his demise from the Cyberknife???
   4. What meds have I tried? Here comes the lengthy part, and not necessarily in chronological order:
       a. Imitrex injections (the only abortive that provides relief 100% of the time);
       b. Imitrex tablets (only worked about 1/3 of the time);
       c. Imitrex nasal spray (only worked about 1/2 the time);
       d. depakote - hated the side effects, did not work;
       e. dopeamax, er, I mean Topamax - doped me up real bad, did not use it for long);
       f. Baclofen - didn't work, made me kind of "dopey";
       g. Cefergot - didn't work;
       h. Ergotamine medihaler - didn't work, more often than not made the CH worse;
       i. Lidocaine 4% topical solution up the left nostril - no help;
       j. Lidocain 4% topical gel (yes, gel) up the nose - no help;
       k. Midrin - a joke if ever there was one!;
       l. Bellergal-S tabs - no help;
       m. Fiorinal -no help;
       n. Fioricet - no help;
       o. numerous narcotics that are poor as abortives, but good for the "after-pain" and "shadows";
       p. DHE 45 i.v. treatment in hospital - no help;
       q. Verapamil as preventive - little help there;
       r. Lyrica as "cycle-breaker" and later as preventive - little help. Note - getting off that stuff was AWFUL! My whole body hurt for a couple of weeks after I titrated off it. Most unpleasant withdrawal symptoms;
       s. Oxygen - little to no help
       t. - zz. I'm sure I'm forgetting a few of the others I tried.
   5. What works for me? Imitrex injections is the only abortive that works for me 100% of the time. Now if it would just get rid of ALL the pain, I wouldn't need any pain meds. Preventives? I can't honestly say that they have really worked for me.
    Other information:
       I am so happy that this site exists! Without it, and all the good people here, I very well might have self-terminnated
by now.
       As to the shroom and/or LSD/LSA thing, my job prevents me from doing anything illegal. Otherwise I might give it a go - it seems better than frying the 5th cranial nerve (the bastard named "Trigeminal Nerve") with radiation. But losing my job and/or jail time? I don't think so! Now if we could just get the federal and state governments tp lay off of us and leave those things alone, well, yes, I would be HAPPY to try the shrooms! But alas! My world is not structured so! But if any of you clusterbuster people want to try to convince me to go that route and could help me to do so, well, give it your best shot.
       Parting comments - thanks to the creator(s) of this website! What a wonderful thing you have done here! A place where the people actually UNDERSTAND what this $#@! is like to live with, and where we can share our experiences fighting The Beast!. Peace and Blessings upon you all!
       If I have the Cyberknife procedure (it's in the Insurance Company's hands now), I will let y'all know the results. Also, if any of you know anything about it, or have had the procedure, please let me know the results. I gather it's very similar (in principle) to the dreaded Gamma Knife Radiosurgery (a/k/a "GKRS") At any rate, please pray for me to make the right decision, and that everything works out OK! As a matter of fact, we should all pray for one another! Excepting, of course the atheists among us. I wouldn't want anyone praying to an Entity they don't believe in!
       Sorry for the length of this post, and thanks for your reading it. Thanks again to all for this great site and the advice and understanding available here! God Bless all of You!

Neal

Welcome Neal. It sounds like you have been on a long rough road. Over at Clusterbusters you might want to read up and ask about RC seeds. Many have had good luck with them. Also you would be one of the few that 02 has not helped if you are going it correctly. What LPM flow were you using?

Potter - Thanks for the link. I'll take a look. What are "RC seeds" and are they legal?

Reference the O2....my experience and that of others is that the higher the flow rate, the better. Some have said that 10-15 did nothing for them, but once they went to 25 lpm it made all the difference in the world.

Hyperventilation helps as well.

If you have a mind to, take a gander at the O2 link on the left hand side of the page. Worth the read.....

Bill

I didn't see Lithium on your list of failed meds.

HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
_________________________________________
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002. Rozen)
================
Treatment guidelines from Europe

------
A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:
EFNS guidelines on the treatment of cluster headache and other
trigeminalautonomic cephalalgias.
European Journal of Neurology. 2006; 13: 1066–1077.

Download free full text:
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
(Thanks to "cluster" for link.)


And see the PDF file, below....
====
A search of major library of medical literature in the U.S. re. cyberknife produced 1-2 abstracts about this being the next treatment which needs to be explored--but no reports on acutal use/outcomes.

At this point, all forms of surgerical intervention have such mixed records that I'd hold them in reserve as a final move when all conventional treatments have failed.

I had to argue with a warehouse foreman who said, "Breathing pure oxygen is NOT a recognized treatment for cluster headaches." It would have been a little easier if he hadn't been a caricature of a warehouse foreman, pot bellied, sweat stained, mouth breathing bozo!!!

My only suggestion is a 1-2 combo. I would get the ramp up attacks too, the 02 would kill it, 10-20 minutes it would come back a little stronger...repeat!
For a while I was taking oral cafergot when I started the oxygen to prevent the comebackers. Someone here suggested using energy drinks the same way. This cycle I've been chugging an energy drink as I fire off the 02. Has been working as well as the cafergot at preventing the come backer without the jitters.

Joe

Hello Neal,
I'm new to this site as well. I'm still not sure when exactly this all started for me.  I had miserable unilateral "migraines"for twenty years. I was on Calan for most of that time and i thought I was being treated for hypertension. Ten years ago a physician felt I could taper off and now, a decade later, I am being attacked by a beast that makes a migraine feel like an eye strain. Never, in my life, have I felt the human being could bear such pain and survive! I have all the classic symptoms... unilateral, ptosis of the eyelid, lacrimation, congestion ... and then the pain. Last night, for the first time since May, I slept. I mean a PF night and, as a matter of fact, I overslept and missed work. What I changed from my usual routine was that I took Melatonin and coffee in addition to Depakote and pred. I awoke this a.m. after 10 hugging my alarm claock!  LOL! I'm not sure how others have persevered for so long with this disease but am hoping I am as strong as they are; I like to think I am. I hate to lose so will keep trying until I win!
I also live in the South so Kudzu is right out my back door; I need a recipe for Kudzu tea!  LOL! I hope you find a cocktail that works and will let you know if I come across a legal concoction.  lib

Guiseppi wrote on Jul 13^th, 2010 at 10:42am:


     What would a warehouse foreman know about it? Man I hate all the people who think they know something about CH and what works for it!
     For instance, this happened shortly after I had been diagnosed, and I had been given xylocaine 4% topical solution to use as an abortive. I was working at a convenience store on a relatively slow night, and in the throes of The Beast, and had just put a couple droppers' worth of xylocaine up the left nostril (had to lie on the floor and tilt my head back and to the left side), some guy came in. He saw me lying on the floor and said, "Sleeping on the job?" I replied, "No, just having a cluster headache," as best I could and this idiot says, "i've had those - just take some Tylenol." that was one of those rare moments when I really wished I could SHARE! if I could've, I would've let him have a taste, and as he's rolling around on the floor with me I would've asked him, "Want some Tylenol for that?!?!?!???"