Hipshot Posted March 25, 2013 Share Posted March 25, 2013 Yes, those late night/early morning hits are the worst. I still wake up and head straight for the oxygen. Hyperventilate it with an optimask and the attack will go away in 5or 10 minutes....sometimes more or less. It stops it in it's tracks (usually.) If I didn't have oxygen during those situations I would be scared to death... like in the bad ole days before this sight told me about oxygen. Quote Link to comment Share on other sites More sharing options...
CHfather Posted March 25, 2013 Share Posted March 25, 2013 Donnie, you want your doctor to see this article from a prestigious medical journal (Journal of the American Medical Association). At the least, print it out and bring it with you. Even better, in advance, fax it or send a link to the doctor and to any support people there (nurse, physician's assistant, etc.). Often these support people are more of a help than the doctor. http://jama.jamanetwork.com/article.aspx?articleid=185035 If I may, since I wrote the oxygen page that b.g. linked you to, I'd recommend the updated one that's here: http://clusterbusters.com/wp-content/uploads/2012/11/OXYGEN-12-2012.pdf Also -- have you tried energy drinks or energy shots for those nighttime hits? Might help. Will help a lot in combination with oxygen. Quote Link to comment Share on other sites More sharing options...
spiny Posted March 25, 2013 Share Posted March 25, 2013 Donnie, Please check on which, if any, of your meds require a taper. IE: Reducing the daily amount gradually. Some things can't just be stopped one day. You can check this online easily. Good Luck! spiny Quote Link to comment Share on other sites More sharing options...
Donnie S Posted March 25, 2013 Author Share Posted March 25, 2013 got my info on oxygen printed off for my doc for wed and seeds ordered and certainly will check out the med thing. my mom is a nurse so that has its advantages too lol. you guys are great ....cheers to better days ahead.the last 3 have been brutal.scared to go to sleep. Quote Link to comment Share on other sites More sharing options...
Donnie S Posted March 27, 2013 Author Share Posted March 27, 2013 doc give me the prescription for oxygen today. should be set up tomorrow sure hope it helps. Quote Link to comment Share on other sites More sharing options...
CHfather Posted March 27, 2013 Share Posted March 27, 2013 doc give me the prescription for oxygen today. should be set up tomorrow Great, Donnie! Two suggestions: (1) Call the O2 provider to confirm that they are going to bring you the right stuff. Many O2 providers have never worked with CH patients and so they make mistakes. Be sure you're getting O2 in a tank (cylinder), not a concentrator. Non-rebreather mask and a regulator that goes at least to 15 litres per minute. You would like to have at least one large tank (an "M" tank) and at least one smaller one (an "E" tank). (2) Be sure they set it up for you and show you how to use it. It's simple, but you don't want to be worrying about whether you're doing it right. As you use it, (1) Cut off (or don't use) the strap on the back. Hold it firmly to your face. (2) There will be two round sets of holes on each side. One (or possibly both) will have a gasket in it that keeps room air out as you breathe in and lets the air out when you exhale. If only one has that gasket, cover the other as you breathe in, so you're getting no room air. Or tape it closed.  See how this goes, but also consider getting an O2ptimask. (3) Don't forget about trying to quickly down an energy drink just before you get on the O2. (4) Hit the O2 at the very first sign of an attack. Best wishes for success with this. Quote Link to comment Share on other sites More sharing options...
martin Posted March 27, 2013 Share Posted March 27, 2013 ive had CH for 20 years now, maybe 10-15 years chronic. it kinda slowly developed into that, just got worse and worse. at some point i just allways felt bad, those shadows never went away and i rarely have good nights sleep. verapamil and meditation helps me through it, and im trying this now, since a week. Quote Link to comment Share on other sites More sharing options...
Donnie S Posted March 28, 2013 Author Share Posted March 28, 2013 thanks chfather .... spoke to the provider today and they have dealt with several ch patients and the doc just wrote pre "as needed for ch treatment" so hopefully all goes well. Thanks for all the help thru this. Quote Link to comment Share on other sites More sharing options...
Donnie S Posted March 28, 2013 Author Share Posted March 28, 2013 Are ya poundin these energy drinks to ya for these hits at 2 am ? I guess id be cookin breaky cause id still be awake lol Quote Link to comment Share on other sites More sharing options...
CHfather Posted March 28, 2013 Share Posted March 28, 2013 Are ya poundin these energy drinks to ya for these hits at 2 am ? I guess id be cookin breaky cause id still be awake lol A lot of people find that the energy drinks don't keep them awake. Can't promise that, unfortunately . . . just sayin'. Quote Link to comment Share on other sites More sharing options...
b.g. Posted March 28, 2013 Share Posted March 28, 2013 Are ya poundin these energy drinks to ya for these hits at 2 am ? I guess id be cookin breaky cause id still be awake lol A lot of people find that the energy drinks don't keep them awake. Can't promise that, unfortunately . . . just sayin'. Agree. Silly as it may sound, I (along with most of us) have either built a tolerance to the chemicals, or have just plain learned how to mentally block the chemicals that keep you awake and get you all wired up. I drink 3-5 16oz. Rockstar drinks every day. I can pound one and fall asleep 30 minutes later. Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted March 28, 2013 Share Posted March 28, 2013 A lot of people find that the energy drinks don't keep them awake I was surprised the first couple times I read about it, but now I too have noticed enough CH'ers commenting about being able to fall back to sleep after an energy drink (used to help abort a wake up hit) that the phenomenon is starting to appear typical even. Quote Link to comment Share on other sites More sharing options...
martin Posted March 28, 2013 Share Posted March 28, 2013 i cna sleep too after energy drink, if ive only had a couple hours sleep. if i drink it in the evening, though, i cant sleep at all that night. so i only do during daytime. Quote Link to comment Share on other sites More sharing options...
ClusterHeadSurvivor Posted March 28, 2013 Share Posted March 28, 2013 i just drink coca cola. I dont like energy drinks. Quote Link to comment Share on other sites More sharing options...
CHfather Posted March 28, 2013 Share Posted March 28, 2013 i just drink coca cola. I dont like energy drinks.  As you wish, of course, and I realize your situation is different. But if one is looking for caffeine, which is what most folks think helps with the attacks (plus taurine, which Coca Cola obviously doesn't have), you're not getting much caffeine from Coca Cola -- about 2.8 mg per ounce in Classic Coke and about 3.8 mg/ounce in Diet Coke, versus about 18 mg/ounce in drip coffee. A 12-ounce Coke Classic has about 34 mg of caffeine; a 12-ounce "cup" of drip coffee has about 215. For the sake of comparison, 12 ounces of standard RedBull has about 120 mg of caffeine and a two-ounce 5-Hour Energy shot has 138 mg. Since most people with CH prefer "energy drinks" to coffee as an abortive, you gotta figure it's something other than the caffeine that makes the difference, since an 8-ounce cup of coffee has considerably more caffeine than an 8-ounce standard RedBull and also more than a 5-Hour Energy shot. I guess that's why taurine is considered an important part of the CH-aborting equation. I don't know whether the taurine connection has been analyzed in some persuasive way. Some people have taken taurine supplements, which they believe to have helped. Quote Link to comment Share on other sites More sharing options...
Donnie S Posted March 28, 2013 Author Share Posted March 28, 2013 Oxygen folks should be here any minute to hook me up.God i hope this helps. Quote Link to comment Share on other sites More sharing options...
Hipshot Posted March 28, 2013 Share Posted March 28, 2013 It WILL help. Make sure you are getting 100% oxygen at a rate where you can breathe it fast and deep. Oxygen in....bullshit out. Long deep breaths, fast at first. Dan Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted March 28, 2013 Share Posted March 28, 2013 Oxygen in....bullshit out. Now THERE'S an inspired slogan! ;D Maybe it can be adopted as the official theme of the 2013 C-Busters conference. Quote Link to comment Share on other sites More sharing options...
blueballs Posted March 28, 2013 Share Posted March 28, 2013 Since most people with CH prefer "energy drinks" to coffee as an abortive, you gotta figure it's something other than the caffeine that makes the difference, Taurine dont do squat for me...Those guys haven't tried my coffee..he.he.he. Have to cut it with creamer to make it pour. booohya!! bb Good slogan but then Racer would have to leave.....bbbhhhheeeeeeehhhhaaaaaaaawwwwwwhhhhaaaaaaaaaaa...j/k ;D ;D ;D Hackin on ya Beeeuuuullllllll! 02 in Bullshit out...ya baby ya! oh ya,,I got some chronic...oops wrong thread. Quote Link to comment Share on other sites More sharing options...
ClusterHeadSurvivor Posted March 28, 2013 Share Posted March 28, 2013 i drink coke because I love the taste. I dont drink energy drinks because I loathe the taste. Quote Link to comment Share on other sites More sharing options...
Donnie S Posted March 28, 2013 Author Share Posted March 28, 2013 I would drink straight horse p!ss if it will help this pain in my head lol.First night with the 02... should be interesting. Quote Link to comment Share on other sites More sharing options...
Hipshot Posted March 29, 2013 Share Posted March 29, 2013 You are always getting your threads confused BB ;D Quote Link to comment Share on other sites More sharing options...
Donnie S Posted March 29, 2013 Author Share Posted March 29, 2013 Just about bedtime here in the northeast and first night with my 02.Been goin without meds all week preparing to try busting next week.Cant thank ya'll enough for the info and encouragement.Im sure i will be back for more pointers.Sweet dreams.......great bunch on here! Quote Link to comment Share on other sites More sharing options...
alleyoop Posted March 29, 2013 Share Posted March 29, 2013 great bunch on here! I couldn't agree more Donnie! Quote Link to comment Share on other sites More sharing options...
CHfather Posted April 1, 2013 Share Posted April 1, 2013 Donnie -- How's the O2 working out for you? Quote Link to comment Share on other sites More sharing options...
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