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Everything posted by weatherman

  1. CHS, Thanks for the reply ..........some extra info  First, the O2 masks (yes, everyone of them on the aircraft) can only be deployed when pressure-activated sensors detect a sudden decrease in cabin pressure, usually at about 8 psi, or 14,000 feet. As far as I know, there is not a manual deploy button for the O2 masks to drop from the ceiling. It's a different story in the cockpit. The flow rate is not variable and set between 3-5 lpm. Several different systems are used to generate/dispense the O2, but once its started, it cannot be shut off, as in the chemical generator variety that downed the ValueJet. Second, you can NEVER travel with O2 tanks on any commercial aircraft. That will get you introduced to the CIA/FBI very quickly, if you ever make it past the terminal inspectors. The fine is near 25K and you'll undoubtedly do jail-time. Portable Oxygen Concentrators can also only supply a max flow rate near 5 lpm and are approved for air travel, provided you supply the required documentation. Supply equipment, masks, hoses, regulators, are OK to travel with. Some medical oxygen requirements can be met by the airlines. They all have different rules and costs. Apparently in France, all of their O2 is stored, delivered and used in liquid form. It's illegal to personally transport and the equipment necessary to convert it to gas is complex and expensive. For a one week stay at two locations (Paris and LesBaux) I was quoted $1600 to deliver and set-up O2. I decided to pass on the option. Third, I most certainly spoke to the nice lady sitting next to me as soon as I boarded to plane. She was sympathetic and like me, hoped it wouldn't happen. I got to hear all about her migranes that took THREE extra-strength aspirin to cure. My wife sitting on the other side did all the communicating with airline personnel for what I needed and that there was no danger from me exploding. Yes, I did have Energy Drinks, cold water and ice .... but they didn't help at all. Imitrex saved my bacon this time weatherman
  2. GET THE IMITREX INJECTIONS! Took a recent trip to France for a two week vacation. I live in California and was in a nasty chronic cycle at the time.  Pre-busted three times with good doses of Mushies and was doing well the few days before departure. Of course, no O2 was available overseas (unless I was willing to spend about $1600), but loaded up on 10 injectors before going. I had never used the Imitrex before and had always saved it for the "last resort". Short story... The whole time in Europe wasn't too bad with several K7-8's. Cold air, Energy drinks and silent screaming took care of them. They were all late at night and most likely triggered by French wine. The ride home was a freakin nightmare. Two hours into an 11 hour flight and I got hit harder than ever. The poor woman sitting next to me must have thought I was turning into a Zombie. I cried, trembled/winced in agony and crushed my head in hands for a long time. Finally got up to use the Imitrex in the restroom and fell in the aisle. Crawling the last 20 feet, another passenger helped me and I finally got inside to fire away at the injection. The relief was rapid and was almost back to normal when returning to my seat. Hallucinating in pain at 35,000 ft over the N Atlantic Ocean, locked in a tiny aluminum box and shooting up drugs that I'd never tried ...... was the lowest moment in my CH career. My advice is to stay ahead of the Beast. Use meds when the first shadow appears and always keep an eye out for the "safe place to hide". I gave my O2 tanks a big hug on getting home. All in all, I'd do it again! Good luck, I'd say GO FOR IT! Have a great time! Wish you a PF vacation! weatherman
  3. Tyke, Yes, you have the understanding and sympathy from ALL of us, because we've been there too. Pretty much everyone who has ever had a headache (and that IS everyone) thinks they are all cured with those "extra-strength" aspirin. I typically avoid any explanation at all, just say you'll be OK and leave me alone. Migraine sufferers are led to believe they are especially victimized by pain. They take OTC meds, lay down awhile and it usually goes away. But they do suffer too. I like "neurologically-induced self-annihilation" as a description of how I feel. Then ask, "How often have you considered death as a remedy for the pain?" When they really don't get it, explain the KIP Scale, and how a tension headache is about a "three" and migraine headaches rate a "five/six". Can you imagine worse than that? Then tell 'em you take Migraine meds when you stub your toe.   The real game changer is having them actually witness a K8-9 happening. Show a video, there's plenty out there. Curls my short-hairs to this day seeing that happen. We're always here for the latest in rants, support and advice. Hang in there! weatherman
  4. Crud! Progresso Soups are one of my mainstays during worst periods. Guess I'd better start reading labels. Dang, another yummy to avoid. Thanks CHfather ..... seems like good advice. weatherman
  5. What's amazing is just how little of a pressure drop is needed to trigger CH. Standard pressure at Sea Level is 1013.2 mb or 14.7 psi FLYING: Huge pressure decreases, typically over 700mb (11.2 psi) drop in         pressure. That is nearly 75% decrease in the weight of the atmosphere         pushing on your blood vessels as you climb to roughly 35,000 ft. :'( DRIVE to Mountains: Going from the beach to 6,000 ft above sea level is a 200 mb         (3 psi) decrease in pressure......That's a 17% pressure drop. Mild when         compared to flying. :-[ Frontal Passage: Typically in the 20-30mb decrease in pressure. Folks in Canada         may see 30-40mb drops. That's only 2-3% decrease in pressure, yet it         can still send us screaming. :-/ How can such seemingly trivial changes in the amount of air pushing down on our bodies have these crappy results. The mechanisms in our body that respond to pressure changes are very finely tuned. So, the pressure chamber idea may not be too bad of a concept. You would only have to raise the pressure about 1/2 to 1 psi to get back to the relatively high pressure before the front passed. Richardo, when you finish it, I'll go first weatherman
  6. Indeed, a complicated subject. Would be great to get an accurate world distribution on CH patients. I don't know if that will ever be possible. Correlating their location to daily, monthly and seasonal variations in temp/pressure would then be easy. The true test would be to have a large group of us move to an area of mild weather variations, then see what happens. Both of these ideas seem unlikely. It seems (at least for me) there are primary causes, then secondary triggers for CH. Then comes the hypothalamus malfunctions, subsequent hormone barrage and nerve firing that we all love so much. This pattern could probably affect anyone in any location in the world, depending on their sensitivity to the trigger. Genetic disposition, head trauma and other stresses don't know where you are located. The secondary triggers, like alcohol, pressure/temp changes, stress, allergies, etc ...... can either combine to ramp up existing tendencies for CH or start an episode on their own. They are not the root cause of CH, but light the fuse that lead to head explosions. The possibilities / combinations / variations are numberous for what can set off CH. I too suffer from the rapid pressure drops and temperature rises. Living in California is pretty mild compared to the Scandinavian countries or Canadian Maritimes for weather variation. I can only imagine living in those conditions with CH. Airline flights and passing Low pressure systems send me running for O2 and Imitrex. When diving, 33 ft below the surface is one atmosphere of pressure. The extremely rapid pressure increases found by only dropping 10-20 few under water are unparalleled to any weather event. If dropping pressure is a trigger, then is rapidly rising pressure a treatment (as previously mentioned?) I know that cold air sometimes helps me when CH is triggered by heat. The effects of atmospheric pressure and temperature variation, and related physiological changes, have been well documented in medical literature. The problem still exists on how to connect vasoconstriction/dilation (due to weather), plus internal energy levels and all the other connections that our body makes through the chemical changes associated with the other triggers (such as alcohol, perfumes, etc), into the effects on the hypothalamus/hormones/nerves. I pretty much agree with Bobb, that the jury will be out for some time, or at least until someone discovers the true cause of CH. Might be an interesting project to tackle when I retire ....... weatherman
  7. Hey Darby ..... Welcome to the best place you hoped to never find. We all started here in pain, confused and frustrated at the lack of knowledge about what was happening to us (well, at least I did). The good advice, experience and camaraderie from the folks in this group, known affectionately as ClusterHeads, will work for you. Lots of recommendations to try, but remember ..... KEEP TRYING UNTIL YOU FIND SOMETHING THAT WORKS! Ask questions and rant away as needed. That's what we do. Best of luck, welcome again and wish you many pain-free days...... weatherman
  8. Gotta agree with that...... Serious wind event, Sun-Mon-Tues, on the West Coast followed by a minor heat-wave on Wed has sent me screaming. Worst series of CH I've had in at least a year. Tree pollen count through the roof and the stress of 60 hr work weeks has not helped either. Busted last night and after a few minor slap backs today, there is a huge improvement. I also don't take any meds that would interfere with busting, so giving it another go early next week. If I saw God last time, I'm gonna be God for this next one. Thankfully, O2 still aborts fairly quickly. Have gone through my usual 4 week supply in the last 5 days. Time to refill! Keep at it guys, that Beast can be a bitch but has its weaknesses....... weatherman
  9. Ditto all that !! In 4 years, have never used the O2 at work ... or needed it. First day off, like clockwork I get hit at 2pm, then again that night. Have tried going to the gym or just fast-walking at "hit-time" on days off. Eat good, drink plenty of water and try to sleep ..... first day off and here it comes. I never go to shopping malls (hit 6/6 times in last 3 years), drive anywhere (hit 44/50 times) or take that afternoon nap (hit way too many to count). Yup, that just how it works! weatherman
  10. Definitely making Chicago this year..... Staying the whole time and looking forward to every second. I plan on writing it all down this time and taking more photos. Sheesh, forgot most of the good advice and names that went along with it from last year. Can't do that this time. If Dan's giving out lap-dances ..... I'm bringing a bag of plastic gold coins from Mardi Gras ..... that'll keep us busy for awhile! Bringing beads too! Honestly, Hipshot is damn nicest and bravest CH dude in the land. I'll never accumulate half the experience, grow half the nads or deserve half the respect he certainly deserves. He and Bob W are my champs in this battle. In fact, an awful lot of sincere Thank You's need to be done face-to-face. I'd have just lost my mind by now (and prob much more) if it wasn't for all of you. weatherman
  11. At first onset, you think the worst. Major cranial trauma and certain death come to mind. You feel pain like never experienced and wonder how that can be survived. Then frightened confusion, search for medical answers and visits to your doctor. You are fortunate to have discovered the problem rather soon. I sincerely hope your doctor is understanding and will provide you with Oxygen. This is paramount! Every single person in this group has been in your place. We know what you are going through and are willing to help. If you are lucky, after a correct diagnosis, you get connections to neurologists and the learning process begins. You are now here, with ClusterBusters .... the Gold Mine of information, support and knowledge about treatments. Believe me, this group has tried everything known to mankind to eliminate/minimize Cluster Headaches. What is recommended works for many people, including myself. I've been Chronic for 4 years and only since last Fall have I gotten regular relief from the "Busting" methods promoted in this forum. I just works. These people have saved my life, my sanity, my marriage and my job. How do we do it? Survival and just plain toughness. This crappy affliction will not beat us and as a group we are stronger. I'm sure many of the "Big Guns" of this group will be answering you shortly. They are wise, courteous and very helpful. Listen to them and you will be better off. Hang in there Donnie S, help is on the way................. weatherman
  12. and the light bulb shines again ....... I have never used the Sumatriptan Succianate Injection since first getting the script in Aug, 2012. Just been too reluctant of doing the "last available step for relief". But I have pulled out the kit, curse, scream and threaten the Beast with this weapon of internal desctruction! Somehow it has worked on multiple occasions. I had exactly the same experience! Beast exits in minutes. Altering the energy levels in the mental/physical characteristics of human biology has an effect on the attacks of CH, at least for me. When I decompress from high-energy states, usually work days, that when the hits are the worst. --- 92% of Hits are on days off, or outside of work hours --- 38% are between 2-4pm, when energy is lowest --- 80% Hit rate with daytime naps and alcohol Is this why O2 and Energy Drinks work so well in aborting attacks? I seem determined to fight the Beast on its own grounds, with as little chemical warfare as possible. Maybe the pain thresholds are just getting TOO high. I'll another Amen to all of you ...... PF days my friends.... weatherman
  13. I'm not sure if Santa would appreciate my posing as "some jolly old fart who passes out stuff in December" ...... although, that doesn't sound too bad. I'd neatly package a brand new Hypothalamus for all the CH'rs out there, then throw in some BOL148 for a kick-starter, and bring 10 bags of booze to celebrate. Happy Ho Ho weatherman
  14. We ought to have a collection of stories, titled .......       "Hits from Hell in Public Places" Dan .... stuck between the two large people on an airplane is a classic! I heard stories from fellow Ch'rs at the last Conference that were also incredible. Amazement and laughter (at ourselves) suffering like succotash and trying to explain ourselves to the people around us that "Didn't have a Clue". It is enlightening to hear how others deal with this situation. I'm afraid I'll either be taken away in an ambulance or a straight-jacket. Anyway ..... Ham'd, Hip, BG, hope the days are pain-free. God listens, he just doesn't give a hoot. weatherman
  15. I had a 3 day stay in the hospital 2 years ago for an unrelated medical condition. My doctor (who diagnosed me with CH, and sent me for a CAT scan that day) had me set up with O2 at 20 lpm any time I needed it in my room. Never used it, but I would have "ranted the hallways" if the Beast showed up and I couldn't have aborted it. I absolutely cannot imagine staying in a hospital and being denied something that they hook everyone that walks through the door into. That is just wrong! I have Kaiser Insurance in California and all my O2 is delivered free by APRIA.  My Imitrex is $5 for a set of two shots. All covered under basic health care costs, which are about $200/mo for both wife and I. Sooner or later the entire medical profession is going to catch on with what it takes to deal with these headaches. We really ask for so little sometimes. Just leave me alone with gosh darn oxygen! Just need more doctors (and especially neuro's) to come down with this affliction........Oh, they'll learn quickly. There is plenty of deliberate and intended suffering at the hands of mankind in the world, why restrict help that is readily available, easy to use and non-threatening to the patient? If only medicine wasn't such a business and doctors were more human. End of Rant. I know I could have just as easily written any of these tales. weatherman
  16. weatherman


    Hi poyzinivy..... Sorry you had to find us, but GLAD you're here. The discoveries and info gathered by the "Gods" of this group are absolutely compulsory! Speaking as a four-year Chronic myself, the O2 (correct set-up), mushrooms and D3 Vitamins are indeed a life saver .... and sanity saver like Hipshot said. Your husband has a right to freak-out, just like all of our spouses have. I can't imagine seeing someone else go through what I do. I can't even watch video's of people having a CH attack. Just too disturbing! Ask all the questions you can think of and you will be answered with VERY good advice and instructions. The experts are on board --- just jump in! I too, had never met anyone with CH before going to last years Conference. The experience is PRICELESS. It made a believer and true supporter out of my wife. Best of luck, and pain-free days to you ........... weatherman
  17. Hey b.g. We have the same initials! I'm sending some extra potent karma your way, so the storm running you guys over on Monday can bring some relief. If you survive the rain, pressure drops and wind .... you can beat the BEAST!! Honestly, my heart goes out to ya. I'm Chronic and in a High cycle too. A serious dose of MM (about 6 gm) has kept me sane for just over a week now. I was in your place at the end of February and just waiting for lightning to strike and just finish me off. Pain-free days.......... weatherman
  18. Bad News ......... I too found the Beast in my mid-fifties.                 Living with this forever? :-/ Very Sad ......... Our Healthcare System. At least I have good insurance that                 covers everything (O2 and Imitrex). I'd be a wreck if I was                 treated like some of you folks. :-[ Real Bummer ..... Age 101, really? We gotta get her to a Convention! Totally Sux ....... Working with AirGas. They cut me off O2 when it became a                 Scheduled Drug in California. I really had to scrape to find                 someone else who would fill my personal tank. I did and they                 still required a script (which I had). :'( Godawful .......... Big Pharma. No more comment needed. > Absolutely Virtuous .... 2Funguys, ClusterBusters and my support group. One thing learned, is keep trying to find what works for you, then push like heck to get results. weatherman
  19. Hi Guys, I too have been a very satisfied Apria customer, ever since being diagnosed 2 1/2 years ago. I have Kaiser Insurance and Apria was just part of the deal. I have never paid one cent because it's all included in the Health Insurance, and it's delivered to my door, any time except Sunday. They will set up regular delivery, or I can will-call O2 whenever needed. Their Travel Dept is wonderful. They can have O2 ready and waiting at any hotel or residence that I have stayed. That includes Florida and Nevada so far. Pick up the tank at the desk when arriving, then drop it off at the desk when checking out, couldn't be easier. I own my own regulators and Optimask and live in San Jose (near San Francisco) California. My script just says "high flow 0@" and they don't carry regulators that go above 6 lpm output. They will deliver any size tank needed, I keep 6 "E" tanks on hand, and that lasts about 3 months now. They even leave tanks on the doorstep if I'm not home (that happened only once when I went to the hospital). Tank stands, valve wrenches and all the tubing are also free. My script just says "high flow O2". Amazing how much the quality of service can vary with different geography. I've NEVER received a bill, just a letter every other month confirming that the need for O2 or my primary care doctor hasn't changed. It completely sucks that you have to hassle with companies that "Offer a complete range of home respiratory therapy". I guess the bottom line is it's still just a business and employees can still be asshats... Pain-Free days to all weatherman
  20. Hey there Beast, I've used Metoprolol for almost two years as part of treatment for high blood pressure, following an event I had in April of 2011. It is a Beta Blocker that relaxes the blood vessels and slows heart rate by stopping the reaction on receptors in the sympathetic nervous system, which is ultimately controlled by the hypothalamus. Metoprolol also reduces the force of contraction of heart muscle and thereby lowers blood pressure. By reducing the heart rate and the force of muscle contraction, metoprolol reduces the need for oxygen by heart muscle. It has absolutely NO affect on my Cluster Headaches as far as I can tell. I have read that it is sometimes prescribed for migraines and other vascular type headaches. I believe (and could certainly be wrong) the Clusters are a different animal all together, thereby having little use in treatment. Oxygen and Psilocybin are all I currently use and they work VERY well. I also keep Sumatriptan Succinate (Imitrex)for emergencies. Hope it helps and pain-free day to you! weatherman
  21. kristikay .... Amazing how a quick couple of visits to this forum can help someone so much. I can attest to the invaluable advice you have been given. Months (or years) of enduring the crap from doctors and the CH condition can lead you to seek guidance from other sources. Glad you found ClusterBusters. The people who initially replied to you are only a few of the GODS on this site. There are many and they WILL help you. The O2 is absolutely necessary! Take their years of involvement, extensive knowledge on this subject and personal experience with CH to heart. You will be surely be rewarded with relief. Best of luck and many pain-free days for you! weathermanÂ
  22. CHSurvivor ...... that is one worth memorizing! I still laugh at the sweetest little old lady, who seeing me crumpled-up on the lawn behind a tent at the local County Fair, sobbing like a wounded animal and rocking back and forth .... offered me a tissue and said "There, there honey, it will all be OK". She patted me on the head and then said "all better now?" No description can adequately describe the pain we experience, so I don't even try. At least we have each other, who can certainly relate ...... and thank goodness for that! weatherman ps I heard some of the most outrageous tales from people at the Conference in Las Vegas. We all enjoyed each others "nightmare stories" about getting stuck in public places with no abortives and the Beast kicking our asses. Yes, misery does love company
  23. I have to "ditto" what Jeff said Last year was my first Conference and first time I had ever met another CH'er. It was tremendous getting first-hand stories, excellent advice and finally meeting some of the wonderful people who support the battle against CH. I'll always try to attend, it's really a great experience. weatherman
  24. For me, once I get past a certain level of agony (say, KIP 7 or higher) anything happening in the outside environment becomes secondary to just surviving the pain. Beyond KIP 8, most input from the senses is just unavailable for processing by my brain. Sights, sounds, tastes, smells and feelings ..... all get shoved well to the background as "survival mode" takes over. It might very well work for lower levels when the Beast first arrives because the hypothalamus is DEFINITELY involved in communicating the "fight or flight" response to the rest of the body by hormones. Messages to the Adrenal Glands cause eminephrine to dump into the bloodstream, thus the energy increase. There's got to be a relationship there. I tried a similar connection through taste, where the hypothalamus gets viscera (instinct connection) via the brainstem. Eating Ghost Chili's (yes, I grow them) only compounded the horror with double the pain from more than one location. Yeah, I was scared then [smiley=shocked.gif] weatherman
  25. Hi spiny ...... 3000 ft is a good altitude change in 35 minutes. The largest difference in air pressure would be if you started near Sea Level, and climbed 3000' up, otherwise it's a slightly lesser value of change. Average Sea Level is near 1013 mb (millibars) or 14.7 PSI (lbs/sq in) 3000 feet elevation is near 908 mb or 13.2 PSI That's a whopping 100 mb, or 1.5 lbs/sq in decrease in pressure. A typical storms Low center (or even along the passing cold front) will be somewhere between 990 and 980 mb, and about 14.1 PSI. That's about 20-30 mb, or only 1/2 pound of pressure difference per sq inch. So, your mountain ride is decompressing your hypothalamus with triple the pressure drop of a typical storm passing, in about the same time span. No wonder it sets off a CH ...... I also get "hit" on mountain trips. weatherman
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