weatherman

It was another amazing Conference. Inspiration levels are again boosted to the ceiling. I'd have to take away an incredible chat with "Batch", to get me going on the D3 and extra push on the exhaling techniques for O2. Mixing-up preventatives also seems like a great way to go. Can't wait to see what my doctor has to say now! weatherman

We will be attending. I have two questions .......... 1) Is there a "Group Code" to use when reserving the hotel rooms? Should I call the hotel and hope they know about Clusterbusters? 2) Will O2 be available to store (and use) in our rooms, just during the conference? I know O2 has been provided in the past at the conference room site, for use while the lectures/presentations are taking place. There is typically O2 available (at off-hours) in someones room also. I typically get hit in the middle of the night and having it close by would sure be nice. My O2 provider at home (Apria) will deliver tanks to the conference, but now they charge a significant price. Can't wait to see all of you headbangers again !!!! weatherman

didgens, Sorry to hear about discovering "barometric pressure changes" are such a trigger for your son. Most of our triggers are avoidable; alcohol, certain foods, sleep patterns, etc, but there's no escaping Mom Nature. Since moving or using a pressure chamber are impossible ideas, how about trying to record and track exactly how much of a pressure change is responsible for the setting-off a CH attack? A highly accurate marine-grade barometer could not only give you the atmospheric pressure, but chart the history and have alarms that you could personalize for CH thresholds. Most of them are rather pricey, but there are ones that would function for your purpose for under $100. You could get the forecast pressure changes from many sources, using their weather maps for your location. Once you've determined the critical decrease in pressure necessary to instigate a CH attack ..... at least you'd be warned. I live in the San Francisco Bay area and a 8-10 mb drop in pressure over less than 4 hours will get me screaming most of the time. When Low pressure approaches I get the cold water, O2 and coffee ready. Sometimes getting ahead of the attack provides relief and sometimes the attacks never occur. Best of luck. Mountain travel and airline flights are magnitudes greater in pressure changes over time. weatherman

jms, Firstly, let me congratulate you for being a supporter. You are NOT a broken record and are NOT alone. Many CH sufferers have lost relationships because spouses and/or family members do not understand, cope well or take the time to learn how agonizing this condition is. It takes a very strong person to watch another suffer these attacks .... I can't watch it myself and certainly can't imagine seeing it happen to a loved one. Just having someone to care is HUGE in assisting your son deal with his predicament. We can all relate to the benefits of nurturing family, and tell awful stories of the ones who don't. What will it take to find a cure? That's the $64 question. It boils down to money and awareness. CH is a rather rare and misdiagnosed affliction and those of us who have it will hide from public view, as the outcome from enduring "these suicide headaches" is not pretty. Western medicine (and most of it's Doctors) do not understand the nature of CH, so its causes, cures and treatment range from bizarre to mundane. There are countless afflictions that compete for medical exploration .... someday, a really rich and famous doctor will encounter CH, dedicate his life to a cure, then this will all be ancient news. This group (Clusterbusters); created and lead by our biggest hero Bob Wold, was formed to integrate information on treatment from actual sufferers that modern medicine has avoided. Big Pharma is profit-driven and there are just not enough of us to justify the expense of research and manufacturing drugs. Big Medicine is not really interested either. More Clusterheads have found relief (myself included) by the knowledge gained from this group than many other standard treatments with drugs, etc. Several things you can easily do. First, get your son to try any and/or all of the methods that have actually worked. CHfather's advice above is spot on good stuff. Try anything and if it doesn't work, try something else. Keep at it and surely your son will get some relief. Abortives such as oxygen for a current attack work excellent, and should be easily obtained .... and there's NO side effects! Busting is best for controlling the intensity and duration of a cycle, if he's Episodic. Chronics like me bust regularly several times a year. Second: Support Tyler Mann's documentary film, now in the creation progress. Support the Clusterbusters in awareness. Attend a Conference if possible ... it's AMAZING. You will be acknowledged and gain so much information. Our members use "Citizen Science" to experiment with treatments, then pass along the results, often with tremendous benefits to sufferers. We are currently our biggest advocate, but that is hopefully changing. Momentum is gathering on research for treatments. Awareness is increasing and more famous people are coming forward with this condition. Progress is glacially slow on concrete developments .... that's why we need each other. Give your son a hug, oxygen bottles and keep asking questions. There is relief. Wishing him Pain Free Days..... weatherman

Hey DH, Any idea what started your cycle in December? I'm at the "trying to figure out new cycles" thing too, and have not come up with any solutions. Just the nature of the Beast, I guess. Also, what type of Triptans were you taking. There's some new one's that are giving may success (thinking 5-MeO-Dalt). Good luck with the current situation. Many of us also get the autonomic symptoms without pain. It's kinda bizzare, but sure beats the crap outta the usual painful outcomes. weatherman

Hi Pete, What's currently working best for me..... Using a mouth tube (instead of mask) set at 15 lpm. Alternate deep breaths as the bag competely fills with gulps of ice water. I also try to exhale completely and hold the O2 in for a bit. weatherman

DDD, Send it to California. We're starting mandatory 30% rationing next week with a boat-load of restrictions on top of that. I'll trade my bucket in the shower for a full lake any time. THMD, That's because PNAC can't adjust their agenda outside of manipulating foreign policy. We'd have "War on Water" broadcast by media and politicians if there was any money in it. Gotta agree though, a pipeline would work. And if it leaked...... At least the dry weather is keeping my CH at bay!!! YAYE !!! weatherman 8-)

Hey ToniEvo, Yup, same thing happened to me with the Verapamil. I quit that drug and was prescribed Lithium after that. WHOA, welcome to the "Land of Side Effects". Quit that stuff immediately! Thanks Doc! Imitrex at 3mg doses has worked very well in the 3-4 times I've tried it. None of that unwanted baggage at all. Pain gone in 5-8 minutes too. Really hated the sensation of hot chemicals scampering through your blood stream with the 6 mg shots. It's got to feel like Chemo Therapy, you just get the overall aura of something really nasty and hot overtaking your gut. I adapted the standard injector to give the 3 mg dose, using spacers to limit the travel of the plunger. It was pretty easy and wished I'd taken photos of the construction. Will disassemble (more like cut up) another injector soon and document the process, then share it here. Never had to take the second 3 mg dose. Good luck and PF days/nights... weatherman 8-)

Moxie, Wonderful bit of prose there. You really grab the essence of the CH experience. It's actually scary to read .... just as it should be. I kinda like the first draft too. Will definitely share this one. weatherman 8-)

Always liked Accuweather's migraine headache maps. What info do they use for that graphic ...... and is it really useful to migraine headache sufferers? Lots of forecast goods for migraine people. A favorite is the Migraine Monologues... http://www.migrainemonologues.com/2012/10/a-migraine-weather-forecast.html Phone Aps, Alerts and lots of other products to attempt prediction for these headaches. If they work for you .... GREAT, but I doubt their practicality. I'm still a big fan of the idea that there are primary and secondary triggers, and that usually more than one has to occur to provoke a headache. weatherman 8-)

didgens... Yup, that afternoon nap (always on a day off) is a trigger, except it was the K7-8 that woke me up. I could never wake it in time to abort with O2 quickly. It is weird that occasionally the onset of CH is very slow. I can stop it with cold water chugging or activity. Especially with a difficult conscious exercise, like solving a problem or increasing mental liveliness with stress. CH is so mysterious. Heat wave in Calif? Yessiree, it's coming. 10-15 deg F warmer than today. Dry offshore flow too, and that means the allergies will be ramping up also. Carry O2 in the car, no naps .... most of all wish him good luck! weatherman 8-)

"C" also weatherman 8-)

spiny, The connection between dreaming and CH should be THOROUGHLY studied. Good information (although listed as purely hypothetical and based on conjecture) is this article; https://www.clusterheadaches.com/cb/yabbfiles/Attachments/CH__Dreaming___Neurogenesis.pdf I started vivid dreaming at the onset of CH, about 5 years ago. The memory and intensity of "the dream experience" seemed to become more noticeable and increase as CH became part of me. Right handed Left side CH, chronic with no head injuries No probable connection for me between dreams and onset of "high" cycle times. THMH .... WHOA! That Larium has the most wicked list of psychiatric, gastrointestinal, cardiovascular, hematologic, dermatologic and nervous system side-effects I have ever seen. I can't imaging what that experience was like? weatherman 8-)

DD, That was GREAT post, remember it well. The Bomba Shack is the bomb! All I can say is Road Trip! weatherman 8-)

Hey didgens ..... As usual, another great topic that's got me further wondering, as I am also barometrically challenged. Pressure drops are definitely a trigger for a lot of us, with flying, mountain traveling and storms passing that bring on the pain. I get shadows while driving, and that's a really small drop in pressure. Head to the hills or take off in an airplane almost guarantees the Beast will visit. I wonder, since heat can also be a trigger for me (very warm days and sometimes with too many covers on the bed at night), I can quickly get some comfort by stepping outside or drinking cold water. Too bad we can't easily alter the surrounding air pressure to test the potential for help. Can just imagine stepping into a barometric chamber and cranking up the millibars as easy as grabbing the O2 and huffing for awhile. This needs to be tested. I've attempted to correlate atmospheric pressure drops with CH, as the resources are readily available to me for that data. Have found that the rapid drops (>2 millibar per 3 hour period) have a 60% chance for triggering CH. This is complicated by a lag time of 15-75 minutes after the greatest drop and the low pressure has been maintained. There are weather websites, like Intellicast, that attempt to predict the areas where weather is likely to cause aches and pains. http://www.intellicast.com/Health/Default.aspx They even have a Bad Hair Day forecast. God knows what parameters they use to determine the likelihood of encountering your particular problem, but they may be on to something. The pressure changes seem to be a secondary trigger that can easily push the primary triggers envelope into the CH range. Knowing the chances for arrival of a barometric changing situation is as simple as looking at the weather map or wondering how many 1000's of feet you'll be climbing in the mountains. Avoiding this position can be impossible and guess we just have to take whatever comes our way, Imitrex in hand. We should all move to the Tropics, have luxurious homes on some beach and build an O2 producing machine. Hmmm .... gets me thinkin. weatherman 8-)