Hello,
My name is Mike, 35, & I had my suspicions confirmed today when I was officially diagnosed as a "clusterhead". In addition, the neurologist believes that not only am I having cycles of cluster headaches, but migraines and "rebounds" as well. As to whether or not I am chronic or episodic, I guess I will have to wait and see.
I will give the background info in case anyone would like to know. Or, who knows, it may help someone else as this site helped me.
Friday, Nov. 13, 2009 I had a very bad headache while at work just before lunch. I left for lunch around 11:00 and drove to my wife's office to pick her up for lunch. (Not to sound like I'm going for sympathy {I just find it almost hilarious in it's complex darkness} but my wife was diagnosed about 3 years ago with re-missive MS. How's that for bad luck? Sorry, I do tend to stray. Anyway, by the time I drove the 2.5 miles to her office, the pain was so great that I was having trouble driving, walking standing, even sitting still was difficult because I had begun to rock back and forth uncontrollably (doing the "dance"). The pain was centered directly behind my right eye and after about ten minutes I had already begun to push on my eye with my fist until I thought my eye would literally burst, then I would try to pull the eyeball away from the socket, then push again. My wife works at a medical clinic so finding a place to lay down was no problem...
Here's where it gets weird...
This first attack had all the symptoms of a migraine (extreme light and sound sensitivity) AND a cluster headache (of which I had never heard of). This attack lasted 5 days with no break at all. And when I say no break, I mean NO break. The pain was consistent and constant for 5 days. All this time the symptoms of both migraine & cluster remained. On the third day, a Sunday, I had had enough and asked my wife to please drive me to the emergency room as nothing I had done or taken (Tylenol, Advil, Aleve, BC powders,Demoral & Lortab) seemed to have any effect. At the ER I was given a CT scan and an 2 injections-nubaine & phenergin (the latter usually just given with other meds to prevent nausea) which actually worked pretty well until I could get home and pass out. Within 4 hours I was awakened by what was now becoming a familiar pain. Eventually the attack stopped, but a normal but non-throbbing & fairly severe headache remained. At this point, standard pain killers (mainly the opiates) did a good job of quelling the headaches but the relief time got noticeably shorter over the next few days. I wish I had kept a better record of the headaches but I did not realize that it would be important later. Over the next few months and even up to now I have had a constant "normal" headache and at least 10 full-blown cluster attacks. After the initial attack, the migraine symptoms have not returned, but the cluster headaches are BAD. (As I'm sure you know if you are reading this) It is THE MOST INTENSE PAIN I have ever felt. Nothing even comes close. And on top of that they are long by cluster standards, always lasting at least 2 hours and usually closer to 3 or 4.
And here's something else weird...
They have NOT been regular or not by 24 hour day cycles, anyway. They almost seem to be walking forward, occurring at roughly the same time of day but about 6 days apart, not daily as in most cases. In other words, they seem to come earlier in the week each week and so far I have only ever had 1 severe attack per day, albeit longer attacks than the norm. And the "normal" headaches between clusters remain.
Hopefully, with the treatment I am about to start, I will be able to manage this. My life is on hold and although my boss has assured me that my job is safe, since my wife was diagnosed with MS our lives have become very dependent on routine and I really want to get back to work and get back on stage (I am also a musician) soon. I just want my life back.
I will post more details about my treatment and how it is working as time goes by and I hope you do the same.
Although the pain is still there (and the threat of clusters haunts me), it is somewhat of a relief to know what this is. That it is real, that I'm not crazy & that I'm not alone.

Sincerely,
Metal Mike

Sorry, I got so carried away with my story that I didn't list the meds I have been prescribed. I wanted you to know what I will be taking so that you guys could give me some feedback, advice, personal experience, etc. I won't go into the exact dosing but here is a list of all the meds I was prescribed...
verapomil
lithium
prednisone (2 weeks)
imitrex injector
elavil
topomax
nexium (just because of the amount of meds on the stomach)

Quote:

Friday, Nov. 13, 2009 ... the pain was so great that I was having trouble driving, walking standing, even sitting still was difficult because I had begun to rock back and forth uncontrollably (doing the "dance"). The pain was centered directly behind my right eye ... ... Over the next few months and even up to now I have had ... 10 full-blown cluster attacks. here is a list of all the meds I was prescribed... verapomil lithium prednisone (2 weeks) imitrex injector elavil topomax nexium (just because of the amount of meds on the stomach)

Certainly much of a full array prescribed, surprising, it may be that only one is necessary if preventing be the objective.  It may become time consuming to detect which from this shotgun start. Disappointingly though, the most useful oxygen was not considered.  Great abortive to start with before throwing all the preventive meds into the mix, especially with such spaced occurences.  A trex is always good to carry for the wrong-place-wrong-time hit coverage.

CH cycles starting out can be unpatterned and spotty.  The pain level and location sound familiar. 

Apparently it's been over two months and a half months now.  Even hits this distanced apart, being able to abort is a main needful objective, but it would be hard to know if any or which preventative is effective or not, they're not foolproof while also not tailoring any appropriate dosage assigned to each or which may do the job.

Hard to know what to say yet, just my undoctored opinion, except welcome, too.    :)

Welcome Mike.
   Stick around and read up.. Sorry you have to be a clusterhead, but it sounds like you may have found the right doctor anyway.
   If you can ,,, you should try to get that Oxygen too.
  It Rocks.

Kevin_M wrote on Feb 5^th, 2010 at 3:59am:

[quote] Disappointingly though, the most useful oxygen was not considered.

Sorry, I meant to mention that he did mention that oxygen is extremely useful for aborting attacks. Unfortunately, he said that it is hard to get O2 for CH patients here. But he did assure me that if these treatments don't work, he WILL get me the O2.
Interestingly enough, back when I was a teenager, I worked at a gas station that sold live bait and we had to keep O2 for bagging shiners (minnows). I haven't been a drinker for years but back then, well, you know how teenagers are. One Saturday morning I came into work with the mother of all hangovers. The old guys like to fish ealry so I was in the bait room all morning. Still don't know what made me think to do it (I think I had read somewhere that hangovers were caused by the depletion of O2 in the blood) but I turned the O2 on and put the hose in my mouth and began to breath deeply. Within 5 minutes the hangover was gone, not better, GONE! I used this method many times over the few years I worked there and although I have heard numerous medical experts disclaim that O2 can cure a hangover, it never failed once. Probably no connection between hangovers and CH, but from reading the message boards for a month now it seems we discount nothing and mention everything, right?
Thanks, Kevin and, yes, if the meds don't work or even if they do, I plan to talk more about O2 with my doctor and at least try it.

---Metal Mike

Welcome Mike,

I would very much agree with Kevin in that I believe only one preventative is adequate whilst combating CH's, in-turn some of these meds can be quite heavy on your system. Do a little more research on the board as regards to preventative medicines and then have another discussion with your doc.

Defo push for the O2 script...!



Lefty...!

02 is well known as a hang over helper!!!! Takes care of the nagging base of the skull headache!

But do push for it for your CH. 31 years of the beast and it is still my first line and most efective abortive. Less then 10 minutes and I'm pain free.

Welcome to the board, wishing you a short cycle this go round.

Joe

Next time you have a headache that is that painful and lasts that long don't wait to go the Dr. The longer you wait the harder it is to get it under control.Also have you talked other Doc's? Sorry your here, glad you found us!

Welcome Mike,

Sorry you have to be here, but glad you found us. These people really know their stuff. Be sure to read all that you can. There's more info here than one can ingest in a reasonable amount of time. It took me days to get through it all. Hope you can get this under control, and stay ahead of that mofo the beast.

BTW, I too am a metal guitarist. Off topic, but what do you consider influential? Gear? Favorites?

Pain free and Metal!
Eric

In my humble opinion, I think you need to choose between the Verapamil, Lithium, and Tomapax, but not all three.  You only need one preventative medication.  If one doesn't work after a period of time, try the other, then.  Also, in my humble opinion, I wouldn't take Tomapax for anything...side effects get too severe.

Also, you could try Melatonin at night, Red Bull at the onset of HA, strong coffee, pacing quickly, and keeping your blood pressure down.

Good luck!

Quote:

Friday, Nov. 13, 2009 ... the pain was ... Over the next few months and even up to now I have had ... 10 full-blown cluster attacks. Unfortunately, he said that it is hard to get O2 for CH patients here.

I'd be interested in backing up to establishing abortive ability.  If you're using the pred now, this may not seem as imperative, but pred tapers are about ten days, it even might be effective ending an episode by itself.  Throwing many preventatives at such spaced occurences in this stage of development may possibly not be as necessary yet as being able to have an effective abortive, but have to wait and see what emerges after the pred taper, time may dictate future management direction.

Oxygen might seem appropriate if things thereafter continue to a brink of becoming multiple daily occurences, preventive considerations seem freely administered if needed, organized although. 

Working on this "hard to get for Ch patients" oxygen begins with trying and just could be suitable by itself, an occasional small supplement script for road trex can be handy.

Anyway, check out oxygen info from sources on this site.  Knowing in advance what you need and its usage is preparation, which in many aspects is proven to be worthwhile.  We can help with the particulars of a setup.  With a script for oxygen, this "hard to get" stuff is not the most understood, a doctor's aid of persistance should overcome any insurance bugger snafu.   So far the doc seems willing to help but maybe not as oxygen familiar as could be, with it being a treatment agenda's proven first line.

Feel free to check in with the haps, good news is the best to hear.  Unpredictable turns to all this have some experienced input available.

:)






Joni, above, has some good bottom line.    ;)

"Experience:  That most brutal of teachers.  But you learn, my God do you learn."  -C. S. Lewis

Ohhh, Thanks Kevin...that is one of my favorite quotes (and authors).

Thank you all for the advice. I will be discussing all these things with my doctor at my follow-up next week.
Also, I wanted to relate this story. Last Saturday, I took my wife to work (she works at a medical clinic) and since they were closed and she was only going to work a half day, I hung around. Good thing I did. At about noon I began to feel that familiar ping in my right temple and knew an attack was imminent. Since I had not been able to afford the trex yet at that time (I have since filled that script), I went to the prep room where I could be alone and have more room to pace. Guess what was mounted on the wall above every bed in that room? You got it, O2! The doctors she works for are good friends and I knew they would not mind so I hooked up a non rebreather mask, cranked up the reg and began to hyperventilate the O2. Since I have a beard I ended up having to take the tube out of the mask and just inhale directly from the tube. It took a while (I think because their regs don't go quite high enough) but it worked. 25 minutes and I was PF! That 25 minutes was no picnic but it never got as bad as they have been and 25 minutes beats 4 hours all to Hell. Once my family doctor (not my neurologist) learned that this aborted the attack, he immediately wrote me a script for O2 and the medical supply place is right next door to my wife's work. I have an E cylinder that I have to get hydrotested, and they are going to order me an M cylinder to keep at home. Until then they gave me 2 D cylinders and a 0-15 lpm reg which I will use for the E cylinder and for the M cylinder I am ordering a 0-25 lpm reg. Thanks to the Oxygen Info section here I was able to work out exactly what I would need and my doctor was able to get me a deal so it's not gonna cost me an arm and a leg. One step closer to getting my life back.

Thanks again, guys
Metal Mike

Great news...now think about ONLY taking 1 of those preventatives!

Hey Metal Mike,
Glad to  hear about the O2. Great stuff. With having a beard you should look into the O2PTI  mask available on this site. It comes with a mouth tube and a mask, regular mask don't.

Breathing from the tube at the wifes work severely limits the O2 you get. The reason a non-rebreather mask has a bag is so there is enough O2 avalable to get full breaths.

Good Luck, Don

Metal Mike wrote on Feb 5^th, 2010 at 10:01am:

... he said that it is hard to get O2 for CH patients here.

Wasn't buying that line easily.   ;)


Kevin_M wrote on Feb 9^th, 2010 at 4:43am:

not the most understood,

Metal Mike wrote on Feb 10^th, 2010 at 3:05pm:

Once my family doctor (not my neurologist) learned that this aborted the attack, he immediately wrote me a script for O2 and the medical supply place is right next door to my wife's work. I have ...

:)        and good preparation, too.