BattMecke Posted December 13, 2018 Share Posted December 13, 2018 Hello All, I live in Des Moines, IA and have an official diagnosis from the Neurology department of a local hospital. It doesn't feel like an ideal fit, I have left the last two visits feeling like an oxygen junkie begging a hesitant doctor for my fix. I have been told I will not receive an official script for anything higher than (2) tanks at 8 lpm. At the 25 lpm that proved effective during my last cluster (one year ago), those two tanks might last a day during a cluster! But I digress. I was given a prescription for Amitriptyline... has anyone else ever been prescribed or heard of this medication being used as a daily preventative medication? Quote Link to comment Share on other sites More sharing options...
CHfather Posted December 13, 2018 Share Posted December 13, 2018 Freaking barbaric. What is wrong with these people!?! If they're actual tanks, you can buy a regulator that will go up to 25lpm. But as you suggest, if they're small tanks, they won't last long. Eventually you might wear down the oxygen supplier, who will tire of constantly having to replace them. Or you can switch to using welding oxygen, as many people do. There was someone else on the board just today or yesterday who was prescribed amitriptyline. It is not a first- or even second-line preventive, at least as far as I know and have read. You know about the D3 regimen? Your best bet for long-tern prevention. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Meanwhile, I guess you know that you ought to be looking for a different doctor, preferably at a headache center. I just looked at the old recommended doctor list that posted here. Sadly, none in Iowa. 2 Quote Link to comment Share on other sites More sharing options...
BattMecke Posted December 13, 2018 Author Share Posted December 13, 2018 Thanks for taking the time to respond and provide additional information. I will look through this and have made a promise to take a more detailed account during the next cluster. I've used hallucinogens recreationally since around the time the headaches started, and while I had read of reports of triptymines helping CH sufferers, this was the first attack I've aborted and avoided sumatriptan. Quote Link to comment Share on other sites More sharing options...
jon019 Posted December 13, 2018 Share Posted December 13, 2018 Hi... ….CHf way ahead of me as usual....and I echo his outrage! Sorry, but you're 0 for 2......with their first ignorance being about the MOST IMPORTANT abort available: OXYGEN. All the other sh** should come AFTER that and ONLY if the oxygen doesn't work. Second, amitriptyline is an OLD line med (Was prescribed over 25 yrs ago...for ME...no benefit...bad side effects). Tis normally used as an anti-depressant and it or related meds have had some benefit for migraine...have never heard of anyone with CH benefitting. A) you GOTTA find a headache specialist or a pain and headache clinic. Are there any college teaching hospitals close by? B )find some way to get oxygen...welding or medical.... it doesn't matter (depending on health ins you may want to find even a general MD who is willing to prescribe). C) start the D3 regimen now....even if you didn't have CH it's good for ya Best Jon 2 Quote Link to comment Share on other sites More sharing options...
FunTimes Posted December 13, 2018 Share Posted December 13, 2018 I would take the os script and fill that first, you can then get your own regulator from amazon to fit the tanks you get, 2 is better then nothing. I would then start working on the o2 supplier, I was given 4 e tanks when I was first set up with my O2 and after being very creative with the delivery driver and calling into the company for refills I am now up over 12 E tanks, 2 m60 tanks and 2 M tanks. The cost stays the same for monthly refills and it takes a little time to build up your stash but it is worth a try. Drivers dont care what you have and most of the time keep a few extra tanks on the truck. the youngsters on the other end of the phone taking orders dont care how many tanks you have and only type into the system what you order and most companys do not have the best inventory tracking software so they do not remember what you have. It may not be the most ethical thing to do but then again limiting you to only 2 tanks of something like oxygen is not the most ethical thing they can do either. 3 Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted December 13, 2018 Share Posted December 13, 2018 I need to meet FunTimes one of these days. His process of getting extra O2 tanks is exactly what I've done. Often the drivers have no accountability for what they have on the truck, and don't report what they pickup or drop off other than what's on the drop off sheet. When they come to drop the 2 tanks. Say you really need another to get through to the next drop off. I've had guys pushing me to take 2 or 3 extra tanks before. The company just wants to get paid from the insurance co., and have to spend as little in gas exchanging tanks as possible. If you call every two days for refills, I'd bet they'll start leaving extra tanks. J 3 Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted December 13, 2018 Share Posted December 13, 2018 Oh, about forgot the VA gave me Amitriptyline some time back as a last resort sorta med. I read the side effects list and decided not to take it. A friend of mine is a nurse and his hospital uses an off brand of the exact same stuff called Elavil. The nurses nicknamed it Evil.... Because most people that take it, become manic when they give it to them... J Quote Link to comment Share on other sites More sharing options...
FunTimes Posted December 13, 2018 Share Posted December 13, 2018 The E size tanks fit nice in a 2 litter soda bottle carrier the pepsi and coke guys use in the super market, they will hold 8 tanks and keep them from falling over when you store them. When your o2 delivery guy comes to drop off your tanks you can take the empties to him in that carrier and ask him if he can just refill the rack for you and you will keep it at your back door for him to make it easier for the next time he comes to deliver. I have done this a few times with only 6 or 7 bottles in it and he fills mine back up with 8 tanks. I have a few extra soda crates for the next time he comes to just trade them out with him. I have also had them not bring a larger M tanks and he gave me a few extra E tanks to hold me over for my next delivery. 2 Quote Link to comment Share on other sites More sharing options...
jon019 Posted December 14, 2018 Share Posted December 14, 2018 I am amused and delighted with the O2 stories...if there was a 1000% like button I would use it. My experience very close to what is described....seems the lower down you get in the O2 shop organization chain... the more likely you get what you need (provided you are in the good graces of the guard dog (shop mgr). Usually picked up my own tanks...by happenstance one day got to know the back room tech..."Norm". Knew about CH, knew the requirements, instrumental in getting M60 tanks in house (previously only e-tanks), offered to link tanks to get the 25 LPM I asked for, GAVE me a $250 M tank regulator "use as long as you need". If there is a clusterheadache hall of fame...Norm belongs! Having had experienced many of the horror stories re obtaining O2 you see reported here and elsewhere... you may understand why I almost bust out crying in the middle of a business office. EVERY visit after I bypassed the front desk and steamrolled to Norm in the back room.... Wise advice to get on the good side of delivery driver...they are usually people persons and can and will do stuff for you that corporate or "office" can't or WON'T. I'd throw a tip at 'em.... Also always found remarkable the apparent disinterest in "tank accounting". They made damn sure I paid on the way out.. but NEVER asked for or accounted for the tanks afterwards.... Best Jon 1 Quote Link to comment Share on other sites More sharing options...
jon019 Posted December 14, 2018 Share Posted December 14, 2018 Hope I'm not misunderstanding. Sounds like they are sending you an O2 concentrator: "I don't have a need for E tanks". NOOOOOOOOO!...won't work...you NEED tanks...at LEAST e's...better yet, M60's...or the welding tanks discussed before...………. Best Jon 1 Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted December 14, 2018 Share Posted December 14, 2018 BOF, My oxygen co, prefers E tanks because they're easy to transport, both in the truck and around your house. I keep a rack of 10 in my front hall closet. Then transfer 2 at a time to my "CH Chair". Then I put the empties in a rack on the front porch for the O2 guy to swap out whenever he comes around. You can easily carry an E tank, but the M and M60, not so easily. J 2 Quote Link to comment Share on other sites More sharing options...
CHfather Posted December 14, 2018 Share Posted December 14, 2018 Brain', Yes, you need some kind of a stand to hold the bigger tanks. There are stationary racks that hold them, and there are also carts (with wheels) that will stand in one place or can be moved. I am imagining that a competent O2 supplier will provide that if they give you large tanks. There are racks for the smaller tanks, too, and I assume one should also be provided to you if you get a smaller one or several smaller ones. For example: https://www.globalindustrial.com/p/medical-lab/medical-equipment/oxygen-therapy-and-supplies/economy-oxygen-rack-holds-6-e-d-or-c-cylinders?trackType=4&trackPrimKey=0&trackCatKey=0&webCatKey=0&presentType=98 1 Quote Link to comment Share on other sites More sharing options...
fourdog Posted December 22, 2018 Share Posted December 22, 2018 A simple two wheeler works well for a simple cart. Also Batt Mecke there are some great Docs at the Mayo Clinic to help . Quote Link to comment Share on other sites More sharing options...
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