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Showing content with the highest reputation on 01/19/2022 in all areas
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I have this fear and haven't flown since CH. I received some pretty cool info when I posted about it (flying). Here is a quick overview of the info I received: 1. Make sure you have abortive meds in your carry on (imatrex injections, Sumatriptan tablets, nasal spray abortive in hand if you don't inject. 2. Have caffeine tablets at the ready and or 5 hour energy, red bull or a monster if the hostist can't serve black strong coffee (most air line coffee is weak) 3. Try and fly when out of cycle if possible 4. Make arrangements for O2 at the destination you will be going to. 5. Take an abortive prior to boarding 6. Cross your heart and don't hope to die 7. Make sure to tell all of us cluster heads how you fare. Ok ok I hope none but the best for you even if I sound like a joker. I have to go to a wedding here soon and um well I'm terrified as it's when I will be in cycle. I'm not going to fly but the terrain (elevation) terrifies me. Here's to your success!!4 points
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Hot soaks also work for me. Every cluster head should at least try it. Works the same way, you have to do it ASAP or it won't work. I must have aborted 100 hits that way the last cycle.4 points
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3 points
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That's it I'm gonna sit in a boiling hot bath tub stick my head out the window hold the shower head over my head stick 2 ice cubes to the roof of my mouth and tape a bag a frozen pea to the side of my head whilst sucking on my o23 points
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3 points
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Other common and recently advised flying tactics have included energy shot(s) in pocket, SPUT (Small Piece Under Tongue - of psilocybe mushroom), triptan nasal spray in pocket, and triptan pill one hour prior to take off. @xBoss also just advised hot soaks for aborts, but OK that could be challenging on a plane - unless you're in First Class.3 points
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edit to add: posted before responses seen Read these: Typical cost with insurance? (That's IF my insurance will cover it... its pretty basic) ...no real typical cost, vast differences in coverage. had various ins over the yrs, if no coverage i met and made agreement with O2 shop Mgr and self paid. $10-14/e-tank. if covered they billed $42/e-tank and my co-pay was $14 (you can pay me now or you can pay me later). i forget what the M-60, my favored tank, cost. supply chain stressed or broken right now due to Covid, call around for $ and availability. i picked up and returned my own tanks which helped my relationship with shop. if delivered, get to know your driver and treat them like the valued partner they are. frequently can and will do things for you the shop won't. a welding setup if med unavailable will cost you a few hundred to start and whatever the refill charge. MANY clusterheads go this route and save lots of $ and hassle. is the same O2 from same spigot so is safe.... When do you start it? (The moment you feel a hit coming? During? Continue using after the hit?) ....you gotta hit the O2 fast and hard at the very first sign of a hit, any delay will slow the abort....too long and the abort will fail. i powered down a 2 oz 5-hr energy drink on way to tank. increased effectiveness dramatically. staying on 5-10 mins after abort to ensure hit aborted... Anything else I may need to know? (I'm sure docs will give info, but I like info from those that have CH as well) ....many docs don't have a clue and a disheartening number will not prescribe.....if you get one of those find a new one...preferably a headache specialist or one willing to learn what you need... ...i kept e-tanks at work and in car...allowed me to be out and about like a "normal" person. m-60 tanks at home because they lasted about 2-3 times longer. if welding tanks used, a compliment of small and large advised.. ...gotta be a non-rebreather mask..the best and a treasured possession of mine available here: ClusterO2 Kit - Clusterheadaches.com - Online Store and is a steal at $25. ...many will advise a hyperventilation breathing technique. definitely the favored and most successful but be aware other techniques also work...like slow breathing or breath and hold... or a combo. you need to try them all to find your bliss.. ...i'm sure to have forgotten something.... someone else will be along to add3 points
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OK let's make a pact to try exactly that, and let us not forget to puff on some DMT at the same time, while remembering it is only polite in such instances to share with neighbors. Wait, firing up some DMT right when sucking O2 would be a highly combustible situation, but talk about going out in blazes of glory as we take flight in bathtubs over the roofs of the neighborhood.2 points
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Does a hot soak work better than a hot shower because sitting in a tub drains blood out of your head, but a hot shower - especially if spraying hot water on your head - doesn't? Also causes me to wonder if keeping ice cubes in the mouth, pressed against roof of mouth, while sitting your lower half down into a hot tub could be an enhanced, if not all that more eccentric, strategy? Maybe if in a cold climate, sitting in hot tub, while sticking head out the window into the freezing air. Could at least provide an opportunity to converse with neighbors while aborting an attack.2 points
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......screaming hot shower on the pain point took it down a couple notches....came right back when i stopped. never tried the hot soak as i'm a big guy and had a tiny apt tub..... wouldn't have thought of it anyway. did usta walk into the -20 F freezer at work with high expectation and low result. felt good cuz i sweated a lot, but no change in pain level. lotsa folks helped by a bag o' frozen peas. have always wondered if these temp gyrations we do help by distraction, blood flow, blood pressure, fooling the hypothalamus, or something else??? xB ...OXYGEN brother!! way faster and drier than filling up that tub....literally life changing for me. when it worked (usually but not always) the pain drained away like water down a pipe....it was a weird and awesome feeling at the same time...2 points
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Hi Billyx! Welcome! Very glad that you found us!!! Additionally, I am sorry that you have CH. Not necessarily for CH, but a lot of folks use a blue light blocker for devices to prevent getting headaches from their devices. The refresh rate seems to have a lot to do with how much it bothers your head to look at them. I get to where I cannot tolerate a computer or phone, but the TV is fine. Have you had a MRI? It is strongly suggested with a CH diagnosis to rule out other 'bad' stuff going on in your noggin. With the cyst, I think this is important to do if you have not had one since your diagnosis. Most, if not all CHers, get at least one done early in their journey. As for shadows, I agree with the ginger and use it too. Caffeine is a huge help for many - Energy Drink or Shot or plain coffee all can help. I strongly suggest looking into the D3 Rgimen. The first iteration is here: https://vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 ATB!!!2 points
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I've never taken my portable o2 on a flight , but when I do fly I always take a samitriptan injection with me in my hand luggage, plus a hand full in my suitcase2 points
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Saratoga, wyo? Wld be a great place to have a cluster.buster's confetence. motels can be got super cheap jan, feb, march- especially if i make reserv's enbloc at some. U learn how the restaurants stagger their hours so u can get good meals. Theres always the 2 gas stations that r used to feeding folks. With the hot min pool and the cooler pool, and then for the rly tough guys? Theres always the "Lobster Pot", small but mighty hot. All open 24/7 and free. And if u so desire a cold plunge? The north platte river is *right there, w its own hot springs and colder areas for u, again 24/7 open n free. They have a lovely new convention center. Theres an airport right there. Travel in? Give urself cpl extra days to get in and out. In case of a snow storm. It can be an adventure coming from i25 thru laramie... but its assesable. Ive done it so many times in my trk and in my itty bitty car. Might be an idea to think abt. Old Baldys Club is by there, too. And if u r oozin big bucks? They have hi end rental homes at the ranch - where u can take horses out and round up cattle, w the boys....1 point
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ummm.....or coffee enemas, but that's a whole different forum...or so i've heard.... ...and now that i'm thinking about it, ice cubes in mouth....or shoved somewhere else? i expect Heebie Jeebie will keep us apprised...1 point
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All autumn, winter, and spring- summer, too. i go to hot mineral springs and sit, walk, and swim, in hot mineral pools. It helps to sit in super hot for ur back and neck. It helps to exercise in that heat? Its like doing hot yoga... ur muscles all loosen up and u can stretch out and swim walk stretch - whatever. u also absorb a mega dose of minerals into ur body...... its like epsom salts in the bathtub? It drains ur soreness out of u, and its most lovely to sit in the heat w steam.... and watch it snow on u. A very beautiful experience. And i found out long ago? Yes, it does help slow the chas u r encouraged to bring a drink (usually no alcohol allowed - ppl have died in the hot pools and drunk is often a factor there). So its great to watch the stars, the snow, to feel ur body rest and regenerate, share a bit of time w others, and i can be pretty much be normal there. NOW? I can bring a monster to drink, too Many many states have hot springs. Ive hiked 2 miles in, in Oregon, to paulana lake w my dogs.. only to find i was supposed to bring a shovel and dig my own pool out of the mud. Saratoga ny. Indian hot springs in idaho springs colo, Pagosa springs colo, cottonwood springs colo, Steamboat Springs, colo has great big pools - cooler in wintertime. Glenwood co is very geared to kids. Saratoga wyo is great - open 24/7 and free. Summer theres a pool for kids. Thermopolis wyo? Good for kids, too. Weiser, idaho? Nice little place. White sulphur hot springs mt? =good. Hot springs mt has a lotta lithium? So u feel floaty. Ppl say its the closest to russia's hot springs for those missing the old country great old hotel on premises. from Banf Canada to New Mexico? Many hot min springs along mntns. Some classy & expensive? Some free. Some geared to kids & family fun. Some dig ur own in the mud. Many states have them. The native americans thot of them as a place of peace where everyone cld gather. Wagon Trains wld often stop in hot min springs to stay and sell their wares because pplalready knew how to find em & tended to congregate around them anyways. If u have old war wounds? U might seek them out and they help chas and theyre a national treasure, too. So if ur kids r underfoot and u suffer w chas? Think abt taking a break n go explore a hot mineral spring and pool, take a picnik lunch along for kids. Have fun. Enjoy.1 point
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I have been called father Christmas on this forum so let give it a try . I can give the reindeer a rest1 point
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I used to do the hot showers when in massive pain and it helped. I'm not sure if I knew how to abort CH back then. I think the hot soaks work due to a big change in blood pressure or blood flow so the shower would probably work but maybe a little bit less effective. I have still not done oxy for aborts so this was my replacement. Def. getting a tank for the next cycle which seems to be coming soon because I'm getting muscle lock and tension lately.1 point
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A good think to get rid of shadows is to take ginger . 1100mg 2 capsules everyday can by off Amazon1 point
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Sometime if your lucky you can abort the attack with the energy drink or strong black coffee without having to hit the o2 . I think in the US the best energy drink is the 5hour energy shot . Sorry don't know the brand we don't get it over here in UK1 point
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I can't tell you about the cost, which varies greatly not only by region but also depending on what you get (how many tanks of what size). Insurance should cover most or all of it. Some people have a hard time getting their insurance to cover it; others don't. I don't think anyone would disagree that whatever the cost, it's worth it. Yes, you start it right away as a hit is coming, and you continue for some minutes after the attack has been aborted. The sooner you start, the quicker/easier the abort is going to be. >>>Anything else I may need to know? (I'm sure docs will give info, but I like info from those that have CH as well)<<< Plenty! If by "docs" in your post, you mean "doctors," no way. Won't help you at all. You get O2 based on a doctor's prescription from a medical supply company. Maybe that company will have someone to give you advice, but probably not. It's not complicated in its essence, but there are lots of things you can do to get aborts faster (related to, for example, getting some caffeine into you as you start on the O2; using an effective breathing strategy; having the right flow rate; and having the right mask and other equipment). When you're ready, it can be discussed more. Many documents here that you can read (e.g., https://clusterbusters.org/resource/oxygen-therapy-for-cluster-headaches/ and https://clusterbusters.org/forums/topic/1433-10-oxygen-information/ and the "Oxygen" section here https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/) and lots of youtube videos you can see by searching [oxygen cluster headaches]. In those videos, Bill MIngus is particularly helpful, but you might find others you like more.1 point
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Apria, Apria, Apria.... call the local office make an account and rent a car and pick up oxygen... they are a national company....1 point