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.

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. 

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? Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

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.

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

LadyLuv

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

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

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.