jms Posted September 27, 2013 Share Posted September 27, 2013 If one goes to the emergency room for CH, is there a typical drug that is given for the pain? Can you request a certain drug? We've had bad experiences with steroids and certain other drugs. Also, has anyone experienced a "heaviness" feeling or tension in their chest during CH? Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted September 27, 2013 Share Posted September 27, 2013 O2 Quote Link to comment Share on other sites More sharing options...
jms Posted September 27, 2013 Author Share Posted September 27, 2013 Thanks for the reply. However we have been using O2 and it's not enough. We've tried several meds in the past but the side effects have been bad and they don't necessarily take the pain away either. I was just wondering if there is a last resort drug that would work. Quote Link to comment Share on other sites More sharing options...
Vickle Posted September 27, 2013 Share Posted September 27, 2013 I have no clue what you should actually be given. But IV Demerol worked for me a couple times. Injections and pills were a waste of time and $. Quote Link to comment Share on other sites More sharing options...
CHfather Posted September 28, 2013 Share Posted September 28, 2013 jms, I don't want to push unpleasantly about this, but just want to be sure you've looked at the oxygen page (under the MENU tab on the left) and you're sure you're doing all you can to make oxygen effective. And I guess we don't know whether you son has tried busting, which has been the answer for many people after all the meds they tried had come up short. Beyond that, there was considerable discussion at the conference about intranasal ketamine as something resembling a last resort for some people. There's some discussion of it in this thread: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1374121712/3#3 One won't get that in an ER (maybe one could get some form of ketamine, but I don't know whether that's true or even whether it's advisable). All I can tell you about intranasal ketamine is what I heard at the conference. If you're interested, I'm sure the conversation can be continued. You'll see a post in that thread from the very wonderful Boston Headache Doctor. He has prescribed ket for some people and, as I understand it, helped others get it through their own doctors. Maybe his advice would be helpful to you. Quote Link to comment Share on other sites More sharing options...
diamondmaker Posted September 28, 2013 Share Posted September 28, 2013 Depends on the knowledge of the emergency room staff. If they try to give you opiods like dilaudid and demerol, they are clueless. Of course this will make you feel better as far as being high, but won't touch the K6-K10 levels of pain, and certainly will not abort anything. If they give you a shot of imitrex and slap an O2 mask on you (non-rebreather at high flow... not one of those canulas), they know what they are doing. Anything is possible going into an emergency room. Say STOP, what is that drug! If it is a imitrex pill, nay nay at them and tell them to go get the injections. If it is opiates, nay nay them again and suggest they just hook you up properly to high flow oxygen with a NRB mask. You can tell them to give you a Ketamine drip, but that is a slim chance unless they have a doc on duty that is familiar with it. Edit: If they offer you a valium or other Benzo, take it! It will help you put up with the frustration of their lack of knowledge and/or their inherant "slow to get you anything" deal. Quote Link to comment Share on other sites More sharing options...
diamondmaker Posted September 28, 2013 Share Posted September 28, 2013 Got to question your O2 set-up. Sorry in advance if you have done your research, but most of us find that when we get no results from oxygen, we are using it wrong. And for those chronics that it quit working for... higher flow with the O2ptimask, or a demand valve system has brought them right back into it working again. O2 Mask ref below, and up to 25 liters per minute! http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=o2ptimask Quote Link to comment Share on other sites More sharing options...
Austin Posted September 28, 2013 Share Posted September 28, 2013 Hay JMS I get that chest feeling and it sucks along with being unable to breath the o2 is the only way sorry to hear you get these I'm on my 23 year and 3+ months into this cycle. I just got this setup for $110 bucks a month with refills on the o2 last night had been the only night i actually slept in 3+ months Take care and be well A Quote Link to comment Share on other sites More sharing options...
CHfather Posted September 29, 2013 Share Posted September 29, 2013 Austin, what do you do with the concentrator? Most people have very little success with them as a primary O2 source, and as I read about this one, it seems like it only produces 5lpm. Glad something's working for you, but if this plus the small tank is your whole setup, I think most everyone here would suggest that you talk to Lincare about getting rid of the concentrator and getting a big ("M") tank instead. Am I missing something? Quote Link to comment Share on other sites More sharing options...
Austin Posted September 29, 2013 Share Posted September 29, 2013 Hi CH Father Actually i think my cycle is over so in a feeble attempt to deal with it i had to get the concentrator because they wouldn't give me the tank and that only had a 5l valve but i had a 15 l valve i changed it but i really hadn't had any bad ones for a few days so i don't know if it worked or not know what i mean. Also i just got 2gr of arg cub's mushrooms that i also did so hopefully they will be gone. So i can at least eat a decent meal for ounce. Hopefully they are over close to 4 months this time and really bad with the heart issues i had been getting. It would be nice if the machine worked for them and my thought is that the nigh ones are so bad maybe if i use it all night it would at least reduce the severity of them. The night before i got that i had a half tank of o2 with the 15l valve and got awoken with some bad ones but used the face mask and it took 15-20 minutes to reduce the pain behind my right eye and i didn't have the chest pain nore the breathing issues. Only this past 2 months i have noticed that my mouth gets very dry when the bad ones occur. Does that happen to any of you? I mean really dry and even if i drink a shit load of water its dry right after. And also i noticed that i can't swallow either or barely. Soon i hope to get some mushrooms when i go to Colorado for the next attack and i really hope they work because the way these have been coming for the past 4 years they have been getting worse by a lot. I had thought they couldn't get any worse. But as far as the machine goes i had to get it and that is costing me $100 a month which is a small price to pay to get the bottle which is only $10 rental doesn't figure uh. Thanks Austin Quote Link to comment Share on other sites More sharing options...
CHfather Posted September 30, 2013 Share Posted September 30, 2013 I'm very glad your cycle seems to be ending, Austin. That's the important thing for now. I don't know whether you intend to return the tank and the concentrator to Lincare or hold on to them, but I think that if you educate them they will understand that a concentrator is nearly useless to you. (We went through the same thing with a Lincare office -- they sent a concentrator and said it was the best they could do, but after I insisted they found a nice big tank and a 15 lpm regulator.) You're wasting $ big time on the concentrator -- heck, you could buy a big tank from a welding supply place, and get your own regulator and mask, for far, far less than you're paying them over time. If you want to be persistent with Lincare, I'd start by sending them this article about high-flow O2 for CH: '>http://jama.jamanetwork.com/article.aspx?articleid=185035 You might want to ask to talk to the respiratory therapist at Lincare; you'd probably get a more empathetic ear there. Also, if it's taking 15-20 minutes to abort, maybe you'll find some useful tips at the CB Oxygen Page that is underneath the MENU tab on the left side of the page. Most people find, for example, that the O2ptimask that's discussed there cuts their abort time significantly. Anyway, here are PF wishes to you! Quote Link to comment Share on other sites More sharing options...
diamondmaker Posted September 30, 2013 Share Posted September 30, 2013 Don't get lazy now that you are PF. Get strait on to getting an O2 setup that will work. Tips: If you buy your own regulator, which is cheap, they can't charge you rental on it. After working for years with apria I am finally at the stage where they don't even charge rent on the "M" tanks. I explained to the Resp Therapist that I only use it A few months, then it collects dust for a few months... yet I must have it available at any unpredictable moment or it means a trip to the ER. I know I am lucky, But explaining to them that you have all your own equipment, all you need is the tanks, changes the game. Be aware that those small E tanks use a different connection than the big tanks. and all welding tanks. Check this regulator: http://www.amazon.com/HCS8715M-Medline-REGULATOR-0-15-CONNECTION/dp/B000JIVWPA/ref=sr_1_1?ie=UTF8&qid=1380520451&sr=8-1&keywords=oxygen+regulator+15lpm this is the CGA-870 connection that will fit your E tanks http://www.amazon.com/Low-Cost-Regulators-Regulator-0-15LPM-CONNECTION/dp/B002J7FLTW/ref=sr_1_2?ie=UTF8&qid=1380520451&sr=8-2&keywords=oxygen+regulator+15lpm This is the one that fits the big tanks, CGA540. Although most will advocate getting even a higher lpm regulator... 25 lpm... at least for your big tank: http://www.amazon.com/Oxygen-Regulator-Standard-Body-CGA540-protector/dp/B00BXRBERC/ref=sr_1_4?ie=UTF8&qid=1380520742&sr=8-4&keywords=oxygen+regulator+25+LPM Edit: OOPS, that last link said 0-25 lpm on the selection page, but in the detail page it says 0-15 lpm. OH Well... they are out there and easy to get. Quote Link to comment Share on other sites More sharing options...
Professor_Tanaka Posted September 30, 2013 Share Posted September 30, 2013 There are a sad subset of us for which O2 is ineffective. If I catch it early O2 knocks it down for as long as I huff, but I am slammed within 10 minutes of stopping it. That seems pretty common among the minority of us who find O2 useless... O2 is more of a 'pause button' than an abortive. I have more O2 gear than most... in fact I rebuild and donate demand valves to those of us who benefit from O2. Thus I can safely say my gear could do the job. I even have one of those clunky O2 concentrators pictured above sitting around. : An experiment I performed last cycle was sleeping with 5l/minute of O2 via nasal all night to see if it reduces the number of nighttime hits. Results were inconclusive on the negative side. :-/ Quote Link to comment Share on other sites More sharing options...
CHfather Posted September 30, 2013 Share Posted September 30, 2013 When I played football in college, I was a very mediocre defensive end, but there was a fantastically good linebacker on my side who always seemed to tackle the many runners that I missed. That's how it feels here -- always somebody to do a great job with the stuff I let slip by. Thanks! Quote Link to comment Share on other sites More sharing options...
Marc Posted October 4, 2013 Share Posted October 4, 2013 If one goes to the emergency room for CH, is there a typical drug that is given for the pain? Can you request a certain drug? We've had bad experiences with steroids and certain other drugs. Also, has anyone experienced a "heaviness" feeling or tension in their chest during CH? Heading to the ER is generally the last thing you want to do for a CH. But, if you feel that you will end up there: - Get a copy of your diagnosis and treatment plan from your MD. - Take it to the ER BEFORE you need to go, and have them create a file for you. - Have them note the presentation symptoms that you will exhibit upon arrival in order to cut their diagnosis time! - THIS is a great time to be suer that they understand that your CH's are not simply drug seeking behavior. I repeat, ER visits for CH's are almost counter productive compared to what you can for yourself in the same amount of time. Marc Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted October 4, 2013 Share Posted October 4, 2013 I'd have to agree with Marc. ER is the last place I'd be going. Personally never had a good experience at the ER. Either my attack is over by the time they call me back. (ER's are good at ignoring someone writhing in pain in the waiting room)... Or, they refuse to do anything of actual benefit to the CH attack. Instead they want you to wait an hour for a useless MRI.... Once an urgent care center did help, before I got a script for O2. The nurses quickly called my neurologist that confirmed what I told them that I needed 100% O2. Within 5 minutes of getting there, they had me a tank and non-rebreather mask. NEVER got that from an emergency room. They're more focused on proper procedure and policy.... Quote Link to comment Share on other sites More sharing options...
razorPP Posted October 5, 2013 Share Posted October 5, 2013 the dreaded er trip, i had to go and i was in a bad way, the doc said this wont cure you, they really did not know anything about ch, he did give me phen, dilaudid and demerol, i took a nice nap in the er for a few hours, so it reset something, but when i got the bill, even with insurance, i was shocked..in the hundreds, so now i stick to my maintenance plans, rc, d3, o2, ect... Quote Link to comment Share on other sites More sharing options...
ChefChris Posted January 18, 2014 Share Posted January 18, 2014 I get morphine and D.H.E. IV. usually works for about a week, however, I bust with shrooms now and life is effin' awesome!!!!! Quote Link to comment Share on other sites More sharing options...
weatherman Posted January 18, 2014 Share Posted January 18, 2014 With plenty of O2 at home (25 lpm regulator / Optimask) and lots of Imitrex ...                   I WOULD NEVER CONSIDER THE ER By the time I got to the hospital and waited (surely writhing in pain) for an hour to be seen, the CH would be gone. Must have blood coming from some orifice to really "get their attention". Rather just sit at home and wait it out. Luckily, this idea has never been tested. Have heard too many horror stories on ER trips. weatherman Quote Link to comment Share on other sites More sharing options...
kika Posted January 25, 2014 Share Posted January 25, 2014 In many hospitals on Ontario, IV DHE would be used if the MD knew enough about clusters. When I went in last summer, I requested 02 alone and it was totally effective. I was shocked that the ED staff agreed to it though. Word must, finally, be getting out! Quote Link to comment Share on other sites More sharing options...
shya Posted January 30, 2014 Share Posted January 30, 2014 My Boyfriend gets a Demerol shot and the K8-10 is gone within 7 minutes.O2 does little to nothing for him.He has been given Morphine and others but the Demerol is the only things that works Quote Link to comment Share on other sites More sharing options...
CHfather Posted January 30, 2014 Share Posted January 30, 2014 O2 does little to nothing for him.   It's my assigned role here to suggest that he's probably not using O2 right. It doesn't work for a very tiny fraction of people who do use it "right," but almost always we find here that people who say it doesn't work for them can get it to work if they use the right strategies. You/he might take a look at the CB oxygen page under the MENU tab on the left side of this page. (Or maybe he's just pretending it doesn't work -- https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1391061090 ) Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted January 30, 2014 Share Posted January 30, 2014 maybe he's just pretending it doesn't work -- https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1391061090  LORDY that is clever as all heck!! ;D ;D Quote Link to comment Share on other sites More sharing options...
derekjoel Posted February 10, 2014 Share Posted February 10, 2014 I've had good luck and back luck with the ER I go to near Seattle. I've gotten pulled in on priority and put on O2 and then another time I was pulled in quick and they at least came around and gave me 2 1mg shots (If I remember correctly) of demerol which did take care of it (K7 or so). I'm on my 22nd year of CH and JUST now learning about oxygen so I'm pretty excited. I should be getting my rig next week. I think I've gone through ~20 episodes now. O2 is WAYYYY better than demerol. Demerol helps it but then you're gumbi for hours and hours. Plus about 90% of the time I throw up on the way out of the hospital on my way home. My wife can attest to all snacks I've left behind in the trash cans and in the shrubs along the route home. Quote Link to comment Share on other sites More sharing options...
VivienneDarius Posted February 13, 2014 Share Posted February 13, 2014 i guess you just have to tell the emergency staff that certain meds don't work for you and they can then figure out what to give you instead. Quote Link to comment Share on other sites More sharing options...
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