defiance Posted June 15, 2016 Share Posted June 15, 2016 Hello everyone As I am writing this my father is being hit worse than usual. I tried everything to calm him down the best I could but of course nothing worked. So now I have to stand here and watch him suffer the likes that I had never seen before. I have a call coming in from the doctor today and I swear I am at my wits end because if he doesn't give us the oxygen therapy I might just go off on him. This thing is destroying our family. Every time he is hit all he does is pray for death. I can't take it anymore. Sorry but I had to get this off my chest. Hope everyone else is having a better day. Quote Link to comment Share on other sites More sharing options...
Dallas Denny Posted June 15, 2016 Share Posted June 15, 2016 G'afternoon defiance Sorry to see that you and your Dad are going thru a rough patch! Don't let your docs decision define your course of action regarding oxygen! I just have medicare for insurance and they won't cover O2 for CH so I've been using welding oxygen for several years now.....a bit of a hassle but fairly inexpensive and it will be a game changer for your papa! Vent away! We've all been there! Sending positive thoughts and pain free wishes ya'lls way! DD Quote Link to comment Share on other sites More sharing options...
defiance Posted June 15, 2016 Author Share Posted June 15, 2016 G'afternoon defiance Sorry to see that you and your Dad are going thru a rough patch! Don't let your docs decision define your course of action regarding oxygen! I just have medicare for insurance and they won't cover O2 for CH so I've been using welding oxygen for several years now.....a bit of a hassle but fairly inexpensive and it will be a game changer for your papa! Vent away! We've all been there! Sending positive thoughts and pain free wishes ya'lls way! DD Thank you. As I am writing this another wave has come upon him and he can't take it. Dallas, or anyone, please inform me on wielding oxygen. I would appreciate some details regarding it because I don't know what else I can do. Quote Link to comment Share on other sites More sharing options...
CHfather Posted June 15, 2016 Share Posted June 15, 2016 Find a welding supply store near you (use google). Go in and ask for a 60 cubic foot oxygen cylinder. (That's fairly small, but it will get him started and treat several attacks. The larger sizes are hard to lug around, but you could go up to 80 cubic feet or more, or get two 60s, or just start with the one 60 and see how it works out. What you get depends in part on how much of a hassle it is for you to get to a welding supply store for refills.) Do not mention that you want it for medical use. You want it for welding. If you're uncomfortable doing this yourself, maybe you have a more knowledgeable friend who would accompany you, or you can make up a story of some sort, in case they ask, that explains that you are getting this for someone else, you don't know anything about welding, so you're just buying what he told you to get. It's actually pretty unlikely that you'll be asked any questions unless they just feel like chatting with you -- you're just another customer to them and their job is to sell you what you want. At some places, you can buy or rent. I would suggest that buying is more straightforward. There's paperwork associated with renting. It won't be inexpensive to buy -- several hundred dollars, at least. If things don't work out for some reason at the first place you go to (though there's no reason they shouldn't), go to another place. You're not a criminal; you're saving your father's life. I've been told that Tractor Supply, which is a national chain, has tanks. Maybe check the store locator there: http://www.tractorsupply.com/?cm_sp=Header_Nav-_-Links-_-Logo NOTE THAT you want a cylinder/tank that is full. Some places also sell them empty. Ones I've bought at welding supply stores have always been full. You can just ask, after you've bought it, "Do I need to fill this or is already filled?" You will also want (but not completely need) a cart with wheels for the cylinders, or at least a stand to hold them. If getting this makes you uncomfortable, you can skip it for now. I'm going to make this next part simple -- there are other ways to do it. At amazon.com, buy this regulator -- https://www.amazon.com/IMAGE%C2%AE-Welding-Welder-Regulator-Cutting/dp/B00JP9WIF2/ref=sr_1_4?s=hi&ie=UTF8&qid=1466033168&sr=1-4&keywords=welding+regulator-- and this mask -- https://www.amazon.com/Medsource-Adult-Non-Rebreather-Oxygen-Mask/dp/B00BBFQ64M/ref=sr_1_3_s_it?s=hpc&ie=UTF8&qid=1466033238&sr=1-3&keywords=nonrebreather+mask. Use whatever quick delivery options there are that will get these to you at the same time as you get the O2 tank(s). Both of these items are eligible for Prime fast shipping, if you are a Prime member. Quote Link to comment Share on other sites More sharing options...
spiny Posted June 16, 2016 Share Posted June 16, 2016 Hey there!! What he is going thru sucks big time. I am sure that you are handing him some caffeine first thing. He needs to let you know when I first starts. If you watch him you might even beat him to the draw on that one. Head or face rubbing can be not noticed by the CHer, but family will see it. Other emergency measures include putting an ice cube on the roof of his mouth at the start and sucking on it. Sticking his nose up next to the AC vent of the car with the air running wide open. Running a few inches of screaming hot water in the tub to stick his feet in. Then putting a cloth on the painful area - hot or cold depending on what works for him. Some go for the shower method - using either hot or cold as their head dictates. Some rub the painful area with an ice cube too. Keep him from getting too hot. No outside in the heat work for now. Just let him move as the pain dictates. Restless movement due to the pain is part of the condition. You don't want him to bang his head if he can help it. But, some banging is pretty common. Please, check out the D3 Regimen in the Clusterbuster Files section. It is easy, cheap, and effective for most. It can start working in days. Lowers the intensity and length of hits for a lot of us. For some, they go into remission with D3 alone. Great stuff there. It is as hard to watch a hit as to have one in my opinion. You feel helpless and that sucks. The emotional pain that a supporter feels is draining. Hang in there!!!! You will get this on the right track soon. 1 Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted June 16, 2016 Share Posted June 16, 2016 Defiance, What part of the country are you? I have to say your father has a pretty awesome kid... Everyone above has some great O2 advice. If you were near me, I'd run a tank over to you. J Quote Link to comment Share on other sites More sharing options...
defiance Posted June 16, 2016 Author Share Posted June 16, 2016 First off thank you to everyone here. So much info and support. I don't know what else to say other than thank you. ThatHurtsMyHead, I greatly appreciate your offer man but I am in California. Regardless just to offer such help to someone you don't even know just thank you man. Well I'll do a little update now. The doctor constantly pushes us to go get an MRI but my father doesn't want to as he isn't feeling well enough to do so. Nor does he want me to call 911 to have him escorted to the ER. His blood pressure sky rockets when the headache hits and so we are going to try some blood pressure bills and hope that does something. Spiny I had a question about the D3. I haven't had a chance to really look that deep into it but I do remember a table of different pills. Does he need to take one of everything? or were those just options that he could choose from? I probably should look at that page but at the moment I just don't have the time to do so which is why I am asking. Any feedback, as always, is greatly appreciated. Take care everyone. Quote Link to comment Share on other sites More sharing options...
surgeonasim Posted June 16, 2016 Share Posted June 16, 2016 Tons of great advice there..... Different things help differently at different times. I hope someone else might have benefited from acupressure. Though I have been pain free for the longest period in the (almost) three decades with the ol friend...I remember it helped me out in a few instances.....pinching the same side eyebrow real hard ....TO THE POINT OF BEING PAINFUL. Between thumb and forefinger, the inner half of the brow. The importance of D3 loading and Oxygen cannot be over-emphasized though. Wishing you happier , pain free sights, and soon. Quote Link to comment Share on other sites More sharing options...
CHfather Posted June 16, 2016 Share Posted June 16, 2016 The ER won't help him. If they know what they're doing -- which is unlikely -- they'll give him O2 ot a sumatriptan injection. Otherwise, they are just likely to shoot him up with opioids or other crap that won't help. Yes, he has to take everything on the D3 regimen. What does that mean, "We are going to try some blood pressure pills"? Verapamil, a blood pressure med, is a first-line preventive for CH. Of course, he has to do it daily, under a doctor's supervision. I don't know whether other types of BP meds -- verapamil is a calcium channel blocker -- will work. But verap is not an abortive, it's a preventive, and its effectiveness has nothing to do with his BP going up when he has an attack. I'm kind of mystified. Maybe we've discussed this, but does he have no pharmaceutical meds for his CH? No imitrex, no verapamil . . . lots of other things that might have been prescribed. If not, why in the heck not? And please please please get him the O2!!!! Quote Link to comment Share on other sites More sharing options...
defiance Posted June 16, 2016 Author Share Posted June 16, 2016 The ER won't help him. If they know what they're doing -- which is unlikely -- they'll give him O2 ot a sumatriptan injection. Otherwise, they are just likely to shoot him up with opioids or other crap that won't help. Yes, he has to take everything on the D3 regimen. What does that mean, "We are going to try some blood pressure pills"? Verapamil, a blood pressure med, is a first-line preventive for CH. Of course, he has to do it daily, under a doctor's supervision. I don't know whether other types of BP meds -- verapamil is a calcium channel blocker -- will work. But verap is not an abortive, it's a preventive, and its effectiveness has nothing to do with his BP going up when he has an attack. I'm kind of mystified. Maybe we've discussed this, but does he have no pharmaceutical meds for his CH? No imitrex, no verapamil . . . lots of other things that might have been prescribed. If not, why in the heck not? And please please please get him the O2!!!! CHfather I cannot emphasize enough how much I have tried to get this doctor to prescribe proper pills. I don't get it. I told him about verapamil and he says no that won't help him because that is for hypertension. I almost went off on him there, but I managed to keep my composure. I am going to start looking for a different doctor. The medication we are going to try is metoprolol. I'll be honest my father can be very difficult and so I am doing what he said as this was his idea. I have no hopes of this medication working but he wanted it as it was something he was prescribed for his blood pressure a while back. I tell him about wielding oxygen and he declines.......someone please tell me what am I to do here? He expects immediate results and I tell him,unfortunately, it doesn't work that way. I just don't know what else I can do. Quote Link to comment Share on other sites More sharing options...
JeffnTx Posted June 16, 2016 Share Posted June 16, 2016 I'm in the middle of a cluster now. I tried to get "welding" O2 and had no luck. They all told me I had to go through a medical supply company and have a Dr px. Jumped through those hoops, which took time and headaches, but the O2 helps immensely. I told the doc that I tried to get O2 under the welding need. He replied that for people with certain heart conditions pure O2 can be lethal. So one reason thay do require a px Quote Link to comment Share on other sites More sharing options...
CHfather Posted June 16, 2016 Share Posted June 16, 2016 Jeff', Glad you got the oxygen, and that it's helping! Just to be clear for anyone else reading this, if you go to a welding supply store and ask for medical oxygen, or ask for tanks using medical-oxygen terminology (an "M" tank, on an "E" tank, for example), they are going to send you away. If you go to a welding supply store and purchase oxygen for "welding," there is zero reason for them to turn you away or to ask any questions about why you want it. Also -- I am 99% certain that your doctor is misguided. Some extreme pulmonary conditions might be contraindicated, but beyond that, the general literature shows no contraindications for sensible oxygen use. Since I am not a doctor -- but I am very accustomed to doctors spouting nonsense about CH treatments, particularly oxygen -- I suppose no one should take my word for this -- but no one should be deterred from pursuing oxygen, either. Sorry if I sound cranky. Doctors, who should be the gateway to oxygen, are instead the primary obstacle to getting it, and that just burns me up. Quote Link to comment Share on other sites More sharing options...
CHfather Posted June 16, 2016 Share Posted June 16, 2016 So sorry, defiance. I really feel for your father. He's far from the first CH patient to become difficult when dealing with this awful condition. I had to fight my daughter every step of the way to get her oxygen (she has CH, not me). She even wouldn't try it once I had it set up, until she got desperate one night -- and it changed her life. I will never forget her laughter as the pain washed away. It's terrible, but also not uncommon, to have an uncaring moron for a doctor. You would think he might just look something up, right? Here's a document from the American Headache Society that might help him stop being a cruel jerk: http://www.achenet.org/assets/2/7/GoadsbyCluster.pdf But probably not. There's a list here of recommended doctors: https://clusterbusters.org/cluster-resources/ Maybe you can get him to one of those, or at least to a headache center, where the likelihood of helpful diagnosis and treatment is pretty high. 1 Quote Link to comment Share on other sites More sharing options...
Dallas Denny Posted June 16, 2016 Share Posted June 16, 2016 Hey Jeff! You CAN NOT let the welding supply folks know you intend to breathe the welding O2!! They are in business to sell welding gases and supplies....as long as you don't let on that you're gonna breathe it, it WILL NOT be a problem! I've always just walked in and told them I needed to lease a large cylinder of welding oxygen....no one has ever asked me any questions....however, if they would have, my story would have been that i had a bunch of heavy scrap metal to cut up and a friend was loaning me his cutting torch rig but he loaned out his O2 cylinder and it was never returned.....that eliminates questions about needing acetelyn....by telling them I'm going to be using a cutting torch, they'll also expect me to be burning thru a lot of oxygen....the real drawback is having to hump a large, heavy O2 cylinder around....but if I can manage it at 69 years old....beats the living hell outta doin without! DD Quote Link to comment Share on other sites More sharing options...
mit12 Posted June 17, 2016 Share Posted June 17, 2016 Defiance, Where are you in california? If you are near Santa Anna give Dr. David Sosin a call. He will work wonders for your dad. Hang in there. Quote Link to comment Share on other sites More sharing options...
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