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Showing content with the highest reputation on 01/13/2020 in all areas

  1. ..dang...I hate it when the beast finds our address again.... ... don't get too hung up on the "right" technique...we all kinda figure out what works best for us...try different styles.... ...in my case hyperventilation not usually possible and my best success was a slow in-out (hold in every few) with an attempt to clear my mind of EVERYTHING except "breath" (hard to do... GOOD distraction!)...and calmed me the f@#* down....which was near as critical as the O2... Best Jonathan
    2 points
  2. ...hi Jost...it ain't glib when we suggest/push/cajole/beg a fellow cluster head to try O2..tis the #1 primary MEDICALLY acknowledged abortive for a cluster hit. Has SAVED LIVES and sanity (like mine)and it's a crime when one of us runs into a med professional who can't or won't prescribe it...or ins that won't cover. A few yrs ago on another forum it would be referred to in almost every thread....it's that important. Some folks don't know about it...I always presume NOT until I know for sure. And I will continue to risk pissing someone off because I can STILL feel the tears from 35 yrs ago when I aborted a hit "like water down a drain"...and I KNEW I just got my life back.....YMMV... but it's damn important to try. I learned about it pre any forum...then the job was to find a doc who would work with me (critical)...and fights with 7 insurance companies. The alternative of untreated CH was sufficient motivation for the battle... Others can detail welding setups way better than I..but yur already 90% there ...and you are gonna be able just shake your head at the failings of some in the med/med insurance community... PFDAN Jonathan
    2 points
  3. https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/
    2 points
  4. Before I begin my rant, or preaching to the choir, I want to thank many of you who have shared your stories with me over the last few months. I'm currently off cycle, on the D3 regimen, and having just visited my GP yesterday for a 6 month follow-up, wanted to relate a couple stories: I guess I'm lucky. My GP is very supportive of my condition. He admits he doesn't see it very often, hasn't had a patient with it in about 20 years, but he listens to me and generally helps with the proper prescriptions I need without objection. This saves me from having to make special trips to the Neurologist, which is time consuming and costly. Yesterday I asked my GP to write a script for O2, and another to change my Sumatriptan from the auto injector to the vial. He did both without objection. He wrote the O2 script properly (15 lpm for 15 min, per attack, for Cluster Headache, and used the proper ICD10 Diagnosis code of G44.009, indicating that insurance should reimburse). He did balk a little at the D3 Regimen, but agreed to run the lab tests for the proper levels. He wouldn't condone the "ridiculously high dose of D3", but also understood that ultimately that was up to me. So, now I have a proper script for O2 and another to get the right delivery mechanism for Sumatriptan. I'm excited! I'm pumped! This is supposed to be the hard part and doc just agreed to everything, straight off. I carry my happy ass on over to CVS to get my new Sumatriptan script filled. Whoa there dude. Slow your roll. "See in our system, drugs are listed as red, yellow or green. Red means we can't get it, green no problem, yellow means its a maybe, and may possibly be gone soon. The vials you asked for are listed as yellow." Well can you order it or what? "Yes, just letting you know, we may not get it, and if we do, it might be a few days." Fine, will you let me know? "Sure" (Said with the same enthusiasm as the kid at Burger King having just been asked to make sure there are no pickles on your burger) Somewhat deflated, but not down and out yet, I roll on over to the local medical supply company in my town. That went something like this: Hi, I have a prescription here from my doctor for oxygen. Can you help me get this filled? "Do you have insurance?" Yes I do. "Well, we can't just give you oxygen. Have you had a blood test with blahblahblah results showing you need oxygen to breathe?" Well, no, I haven't, you see, I don't need oxygen to breathe. But I do have this prescription right here, from my licensed medical doctor, if you'll just take a look at it, I'm sure it'll explain everything. (Won't even glance at the paper in my hand) "Sorry, but a prescription isn't enough. We need lots more paperwork. You need to show you have a valid medical reason for it." (Me getting agitated now) I'm sorry, I must have missed something - I know I'm a little hard of hearing and maybe a little dense. See, I always thought that was the point of going to see a doctor, and getting a prescription. The DOCTOR, decides that a drug or treatment is medically needed and he writes a prescription. I take it to a pharmacist, and they fill it. If there are questions, the pharmacist can call the doctor. Since the pharmacy doesn't carry oxygen, I'm here to see you. So, are you a licensed medical doctor or nurse practitioner? Did you recently perform an examination on me and determine that I don't have a valid medical reason for this Oxygen? Are you qualified to decide what is medically necessary? "No, but the problem is your insurance won't pay for it - you want it for cluster headaches, right?" Yes, and that's the first intelligent thing you've said so far. But you haven't even asked me who my insurance provider is, so not sure you'd know straight off that they won't reimburse, but fine, how much to simply sell me the tank with the oxygen in it? I'll pay for it out of my own pocket. (Walks back to talk to someone else - comes back after a brief exchange with unknown unseen coworker) "It'll be $175 a month" Wait - its a monthly fee? I'm asking to buy a tank with oxygen in it. How do you sell that on a subscription basis? "Well, the fee is the rental on an oxygen concentrator. We won't sell you any oxygen in a tank." OK - let me explain again, My DOCTOR, performed an examination on me this morning in his office, and then determined that I need 100% pure oxygen @ 15 lpm for 15 minutes at a time. If you would have taken just two seconds to actually read the prescription I tried to show you, you would have seen that. I know that a concentrator won't provide that. So are you now attempting to countermand my doctors orders? Furthermore, I need this treatment for about 3 months out of the year. Why would I want to pay a monthly fee for something I wont use for 9 of those months? Basically, you're asking me to pay you $2100 a year for something that I can get on my own for less than a quarter of that. I can see the tanks in the back of your offices here, so I know you have them. What's the problem here? "Sorry, that's all we can do." Well, this seems at the very least, bad business. It's no wonder insurance companies don't want to reimburse when companies like yours are using practices like this. Obviously, I won't be back and will find some other way to procure what I need. Later on in the day, I called the insurance company, and sure enough they won't pay for oxygen to treat CH. I asked them why, but I didn't want to give the call center agent a bunch of crap for policies she didn't create and can't do anything about. She said she would send me a complaint form, but so far, that hasn't happened either. But it seems odd to me that they will gladly shell out hundreds of $$$ a year for my triptans, but wont give me $60 worth of O2. Somewhat deflated now, I'm still trying to find the best way to go on the O2. It looks like Airgas may be the best option short of going the industrial route. I'm going to call them today and see what they say. Anyway, if you made it this far, thanks for listening. I feel better just getting it off my chest.
    1 point
  5. Hey guys, I'm so much of a mess that it hurts to search for the information. Could you please help me with these O2 questions? Thank you very much. 1. How do I use it? Like do you just keep breathing it until you feel better? I was always scared that I would hyperventilate or something. 2. Are high flow valves available or do I have to mod one? I am handy and can do it, just need tips. 3. Any other tips, suggestions or help would be awesome.
    1 point
  6. When suffering the unique, not describable pain that cluster headaches inflict it is natural and normal to grasp for whatever explanation makes sense at the time. We seek to understand lunar cycles, barometric pressures, previous wrongdoings, higher powers, trauma and infectious processes when seeking an explanation. In reality cluster headaches remain elusive in terms of definitive causes and universally effective treatments. Cluster headaches were first described hundreds of years ago before food additives and other entrapments of modern living. Speculation, deduction and personal anecdote dominate discussions among the afflicted. A sequence of biochemical events that result from a virus, parasite or bacteria theoretically may trigger a cascade leading to cluster-like headaches. It is theoretically possible headaches could continued to be triggered after the disease has been treated but this requires a bit of imaginary thinking. Viral encephalopathies are a completely different animal than C dif infections. C dif usually occurs when antibiotics have disturbed the bacterial balance of the gut. Time may tell if there is an infectious disease component to classic cluster headaches but it is more likely the headaches with an identifiable etiology like trauma, infection etc are mimicking clusters. This is an important distinction because in these cases treatment options discussed here are less likely to work. In the end information is good and worth discussing. Who would have thought ulcers would end up being treated as a bacterial disease? Or Lyme disease being a cause of human suffering? Or HPV contributing to certain cancers.
    1 point
  7. Review of what the others said and some additional thoughts here. Hyperventilating is actually good when you're trying to do it. In general, you will get good results if you exhale deeply before your first inhale of O2 (having drank down an energy shot or some caffeine before you begin), then inhale as deep as you can, hold it for a few beats, and then fully exhale, forcefully, with a "crunch" if you can to get as much as possible out of your lungs. You can stay on it as long as you need to, plus 5-10 minutes after the attack has been aborted to hold off future attacks). You'll get the hang of it quickly, and develop your own approach. Some people will turn down the flow rate and breathe more naturally in later stages. When you feel better you can read more about hyperventilating here: https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/ Tips: Look down toward your feet as you do the O2. This helps. If you have a standard non-rebreather mask, there will probably be an open circle of holes on one side of it (usually, one side has a gasket and one is open). Put your thumb over that circle when you inhale, or cover it with tape. You don't want any room air mixing with the O2 as you inhale. For the same reason, make sure you hold the mask firmly to your face -- don't use the strap. The mask made for CH is very highly regarded: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit You only need a higher flow rate if you have to wait for the bag on your mask to refill while you are using the best breathing strategy. If you can do what I said above and the bag is full after your full exhale, you're good. Yes, you can buy higher-flow regs, but as Rod' said, different size tanks take different size regulators. The two types are CGA870 for smaller medical tanks and CGA540 for larger medical tanks and all welding tanks. If you go to amazon and type cga 870 into the search bar, you'll see what those look like, and can compare to what you have. Check with us before you buy.
    1 point
  8. been using 02 for roughly 5 years now. I have both tanks and a concentrator. The tanks have a regulator allowing up to 15lpm. those are for work or away from home. The concentrator up to 10lpm. That’s my at home option. I started with a standard mask and my last cycle picked up a non rebreather mask on amazon. i use the hyperventilation method and mix in deep breathing when I feel like it. all options have been effective for me. Anecdotally, the non rebreather mask works well. typical response time is anywhere from 5-20 minute using these options the research shows 100% 02 anywhere from 7L-12L with any mask options works. Of course there will be some individualization for what works for you. hope that helps
    1 point
  9. Oh yea I always chug some caffeine on the way to the o2.
    1 point
  10. 1. Hyperventilating is good get as much pure o2 in your system as you can. You need a non rebreather mask. One with a bag and stay on the o2 for at least 5 min after the banging subsides. 2. Yes if your supplier doesn't give you one amazon sells em. Make sure the fittings match your tank. I don't know what tank you got so can't help with that yet.
    1 point
  11. Update - Airgas, Here in Tennessee, will not deal with me directly, even with a prescription. The guy I spoke to said "It would be illegal for me to sell you oxygen". He referred me to Apria Healthcare, so it appears he gets the question often enough to know what to tell folks. Tried calling Apria - they still have some hoops to go through - need to call my doctor's office and have them provide the doctor's office notes and demographic information by fax (Hello, 1985 called and they want their technology back) I'm still not sure why these companies need all this additional info. You'd think I was getting opioids in bulk (In fact, I probably could get that easier than getting a tank of one of the most common elements on the planet) Anyway, doc's office is closed early on Friday, so yet another delay. Thankfully I'm not in cycle, so no real rush.
    1 point
  12. Venting is a good thing! Especially when you were treated so rottenly! Not unusual though. It is very infuriating to be put in a position of fighting for a non-destructive med when they will happily pay for one that can be destructive! Sounds stupid, no? The best of luck with Airgas! Hopefully someone who has fought this battle and won will help us out here. I just went with a welding set up.
    1 point
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