Hello everyone. I am a 29 year old male and have been having cluster headaches since 2002...so roughly 8 years now. I went untreated/undiagnosed for about 3.5 years. I have approximately 3 episodes a year that last almost exactly 30 days either left or right temporal; one in feb/mar one in june/july and one in sept/oct/nov. Within these episodes I get a CH at approximately the same time every day, generally about 3-5 and more if I do not avoid my triggers. My episodes progress in what I call a "Pyramid" shape...meaning that both frequency and severity start and end in the shape of a pyramid, peaking in the middle of the episode. I get shadow pains/twinge immediately before onset. Durations last anywhere from 15min to 90min. Onset is acute, within 2-4 minutes to full scale and dissipiate equally as fast when it decides to be over. The pain can be described as originiating in the temporal region (characterized by my vein becoming extremely taught) and cycles outward into my eye, teeth and down my neck. The pain is intense, sharp, pounding..analgous to a hot icepick being stabbed thru my eye while a hammer crushes my exposed brains. I have mild facial paralysis, disorientation, clear nasal discharge, and become clamy. Depending on the pain nausea follows. I generally prefer to wander and stay active but I do find alot of relief from sitting down with head between knees while I take a very hot shower. After the CH subsides I am extremely exhausted and drowsy. My triggers include irregular sleep schedule, red wine specifically but alcohol, chocolate, caffeine, nuts, odd smells like if something is burning in the oven. I have tried preventive prescriptions such as verpamil (did not work) and oxygen (did not notice much of a difference and portability was a issue). I have tried pain management using percocet, vicodin, and staadal (none of which worked well enough to help with pain). The BEST treatment I have utilized is abortive mediction specifically imitrex (sumatriptan) injections. They have been 100% effective for me aborting the CH within 1-5 min. Hope this information helps some people. I understand your pain. This disease is extremely demoralizing and often causes temporary depression/anxiety/fear while I am in my episodes. I am just starting another episode..hopefully I can make it through another one.

No question you can make it through another cycle! ;) A couple other popular prevents you might want to look into, Lithium, at 1200 mg a day blocks 60-70% of my hits and if I didn't tell you I was on it you wouldn't know. Topomax, called dopey-max by some as there is a percentage of users who suffer dopey side effects. But many still swear by it for a prevent.

And you should give 02 another try! Many have found changing HOW they used it has substantially changed its effectiveness. I recently retired from law enforcement. On cycle I always had an E-Tank in the trunk of my cruiser. Feel the pressure start, pull over, let dispatch know I'm off the air for a few. 10 minutes later the CH is gone and I'm back on the road. Most keep a big old M tank at home and then several little E-Tanks for portability.

The keys to making 02 work, and work fast: High flow regulator, at LEAST 15 LPM, preferably upwards of 25 LPM, a Non Re Breather mask, and get on it fast. Your lungs must get pure 02, no outside air, no exhaled air. nasal canulas, low flow rates, re breather masks, all recipes for failure.

Welcome to the board, hoping you have short go this round.

Joe

Hey Stiltz,

Joe's right about that O2, and I'm afraid you've likely been suffering needlessly.

Have you been breathing O2 at 8 to 10 LPM with a rebreather mask? That'd be unfortunate, because that approach pretty much sucks and blows, both literally and figuratively.  :D

The 'ol oxygen info link to the left of this page oughta fill you in on how you to actually use O2 effecftively, something medical professionals are largely wallowing in ignorance about, while hordes upon hordes of CH'ers here have found found relief with it.

Since adopting preventative methods found at clusterbusters.com and it's forum, I don't know if I'll experience another episode, but if I do, I too have found those imitrex injections to come in handy (as a back up - O2 became my first line abortive). Have you seen the imitrrex tip that details how to abort 2 to 3 attacks with one 6 mg injector's worth of imitrex? START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Okay, these are a couple of critical things so far for getting much better control over this beast - please hang around and develop a plan based on info found here that could allow you to experience little to no full on, full length hits.

Dittoes above. What Joe and Bejeeber said about O2 flow and method is also true of abortives and preventatives. We often hear someone has "tried" something or other, only to discover what they mean is they were prescribed the normal dosage and it had little to no effect. For example, verapamil requires a dosage of up to 960mgs/day in some cases, way higher than the normal range. Same with melatonin (see Joe's thread on this) way above the "normal" usage range running anywhere from 5mg/day to 18mg/day. Same can be true of pred tapers. Some start as high as 60-80mgs/day for several days; tapering slowly down from there. And O2-I've needed flow rates higher than 25lpm delivered through a demand valve, but that's when the O2 starts working for me. Share a bit more about what you have tried, how, and in what measure. We'll share our experience with you. Blessings. lance

Welcome Stiltz812002... Please give the o2 another try..

LadyLuv

Quote:

Cluster Headaches from Portland

Actually Cluster headaches are from everywhere.   ;D

sorry, I couldn't resist saying something about the way you worded that.  There are a few folks that we know in Portland that you may want to meet and discuss one-on-one.   I'll see if I can rouse them.   ;)

In the meantime...stick around. 

Linda

That's ME, for one, Stiltz! I'm in the Portland area...although, I am not a Clusterhead, I'm a supporter.....err..cheerleader... aww, we'll discuss it! The point being, you ar NOT alone!
As for how to cope, you have expert advice here-and at the very top of the list is 02... high flow...give it another chance, please, I might even be able to help you get into it!
Verapamil is a drug which needs time to load into your system, as is lithium. Both are successful, long-term aids.  I have pm'd you my phone number. Please use it when you can. We can talk, and maybe sort this out a bit for you.
You have definitely landed in the right place, and, even thoguh I HATE to hear of anyone battling the beast, I'm really glad you found this place! Help is on the way!
Cathi

Thanks for the support everyone. I will browse the forums for proper use of O2. My main concern now is that I am in training from basically 7-1630 everyday...and really dont have access or the ability to drag around a O2 around with me all over campus. How do people overcome this obstacle with a lifestyle that does not allow it?

A good prevent regimen goes a long way. Without Lithium I was a mid morning early evening 2 hit a day guy. At 1200 mg lithium I'll go a day or 2 without any hits. Stay hyped up on caffeine during the day while you're in  training, that'll keep the beast at bay for me. Keep a Rock Star or Red Bull with you to chug down at the first sign of a hit. Keep an E-Tank in the trunk of your car or in a convenient locker. Find some good hideouts...(well vented ones!!!)...where you can huff 02 for a few. It takes a little work that's for damned sure!

Joe

Hi Stiltz.  Portland Oregon perhaps?  Other Portlands out there of course.

Anywho, pm me if you want to get together and we can arrange a Portland group get together with whoever wants to meet. 

Psilocybes and caffeine for me, worked great for the last 2 years.  Suffered for 24 years before that.  You can take control of the pain and people here can help.  Oxygen is a winner for most and so is caffeine. ;)

Check out this video for more options if interested.  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Good luck daddy-o! :D

--Shaggy :)

A lot of folks take their portable tank with them to work or school and keep it in their office or their car to use when they can.   For the times when that is inconvenien...there's Imitrex injections or nasel spray.



Thank you Cathi.   ;)

Hey everybody. This episode has prob been one of the worst ones I have had in the past 7 years, but I finally think its coming to a end. Been about 3.5 weeks now and the frequency/severity is diminishing. I did obtain oxygen last week and it has helped immensely in the morning/evenings. I was only able to obtain a regulator that allows a 8 lpm flow but that seems to be OK for me. I also started to use a herbal abortive treatment consisting of angelica root and corydalis in 5gram and 4gram combinations respectively mixed with water (about 85% successful for abortions). Thank you all for the support and if you need anything let me know.

clint