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  1. ... yeah.... he's wrong! .... crap like that is what makes FB such a dangerous minefield for clusterheads... mixed in with that absolutely essential care, compassion and vital info is stuff like this that does a disservice.... especially to the folks new to CH and those w/o the time, desire, ability, means or motivation to go in depth. i mean no disparagement to the many good folk on the many sites... and i'm there too.... but the info is just so scattershot and unreliable it's scary.... with much difficulty checking the bona fides of the poster or researching a topic.... ... the pioneers of busting figured a better way.... the info is right here.... and the Yales and Harvards of the world are finally getting on board.... .... if the anecdotal reports from thousands of clusterheads on the dangers and consequences of overuse (even "proper" use) of triptans isn't enough.... it's right in the medical literature and on the dang label/insert of the script!
    9 points
  2. I've not been in cycle for a few years now and O2 is my primary abortive when I am. I have not used a triptan in very, very long time, but I still carry one in my pocket everywhere. I will not be caught out and get slapped around again. They have a place in our treatment plan but IMHO they should not be a primary abortive. The more you use them, the more you need to use them. People may deny that, but they are only fooling themselves.
    7 points
  3. Got to love a straight shooter I completely agree with @jon019 on this one. This bit just makes me wonder about the influence being interjected on this individual. Seems that it could be a Dr. that disagrees with alternative medicine or even a family member that is unsettled by the thought of medicating with alternative (non-pharma) meds. Either way, my personal experience with triptans was awful. Sure, I got a good 20 to 30 minutes or so of reprieve from the use of the nasal sumatriptan and sometimes with maxalt as well. In the end what sealed the deal with me on triptans was a slowly ramping up cycle where I had believed my neuro that said I absolutely must take the medication at the slightest hint of an attack (I believe this to be true for migraine not so much CH). About a year ago, I did just that and experienced the looongest, worst hit filled cycle of my entire CH career! I hadn't understood the way my CH worked at the time and thought even one spike meant the end of the world as I knew it. Turns out that sometimes I get random spikes then nothing for months after. Since ditching the triptans (knock on wood) I have never experienced anything of that sort again. Do I still keep a few nasal sprays in my purse.. Yep I sure do because if I'm in a critical client meeting where I could stand to loos a project for the company I could use 30 minutes to buy me a close and am willing to suffer to keep the ball rolling at the firm. Anyhow I felt compelled to respond to this as my experience with triptans was so bad that I have road out many a hit without them for the simple fact that I knew in the end I would be better off for it.
    7 points
  4. Kat, my Neuro prescribed it for me about a decade ago. He handed me the script with 'Ask on your site how this works.' My reply was 'I'm 15 pounds underweight. Where is your trash can?'
    6 points
  5. Hi @Jackie mielniczekplease get off the topamax b4 your body starts getting used to it . So hard to get off it , and as people have said it will do nothing for your headaches .It will make you lose loads of weight plus you will start getting mood swings, plus you start to forget things , your short term memory gets shot to bits . Plus you start to miss words out of sentences when your speaking to people . Horrible med !!!!! You really need to see a headache specialist, get a proper diagnoses. Then if you have CH the first thing you need to get is O2 simple as that . Good luck keep us posted
    6 points
  6. Welcome to the community!! Dallas Denny
    6 points
  7. ... this made me smile cuz i been there... once was lead on a critical sales presentation to some very important clients.... was seated between company President and VP having to prove myself to them too. a hit started right when i did, and quickly got to an 8...there was NO out, i just had to keep going for 45 mins. when the tears started leaking hit side i turned my head so they wouldn't see. might have been the bravest thing i ever did in my life..... and i have no recall of anything i said.... but i made the damn sale! they might have wondered why after the handshakes i ran out of the room tho...... .. thanks for sharing... triptans have their place... i never go anywhere w/o a Zomig ns..... but only as a last resort abort for years now. too many of us know exactly what you experienced.....
    6 points
  8. @ZBM hey I’m a 30 year old female and I’ve been on the regimen since I was 26. The cofactors are nothing but good vitamins you should probably be on every day anyway. Magnesium (good anti inflammatory properties), and fish oil is good for the heart. You can even add any turmeric supplement in there too. Really good anti inflammatory properties there as well. @xxx will chime in shortly I hope. He is the d3 GOD
    5 points
  9. Naw. Everyone on here is a SOMBODY. Tell all us what you do to mitigate your CH and what has been offered you to do as such. You may find yourself kindly surprised at all this community has to offer.
    5 points
  10. For full accuracy: remove the hair, add about 50 years and 50 (or 60) pounds, insert computer, and replace vest and tie with ripped pajama top. But back in the day, I did get to do some fun things.
    5 points
  11. kat', I suppose you have checked this out thoroughly, but from looking on google, it seems like there are lots of welding O2 rental places in Puerto Rico, and also maybe a place where you could rent a concentrator, which might be better than nothing (https://www.rentittoday.com/medical-equipment-rentals/san-juan-puerto-rico-portable-oxygen-concentrator-rental-for-cruise-ship-22966). Maybe it's more of a hassle than you want to go through on vacation, or even too much of an expense. But maybe worth bringing your mask and regulator just in case. Another thought is that you might try some of the FaceBook CH groups and just put out a request for whether there's anyone who lives in PR who might be willing to loan/rent you a tank, or can recommend a place to get one. (I don't expect much to come from this, but I sent a message to the Puerto Rico Tourism Company, asking about getting O2. Many years ago, I actually worked for them, doing training at resort hotels on the island.) Story about a PR neurologist: https://www.latinoleadersmagazine.com/marchapril2022/2022/5/11/i-can-feel-your-pain-dr-franchesca-fiorito-headache-center-in-puerto-rico
    5 points
  12. Hi Rachel! Your PCP is absolutely wrong. What they probably mean is that it’s very hard to get insurance to cover it. They can very easily write a script and fax it over to a medical supply facility. You may just need to be a self pay patient. That’s how I do it.
    5 points
  13. As someone who somehow hasn't had any bad experiences with countless injected doses of imitrex, I still agree with Jon'n Bosco, whom I may now refer to collectively as JoBo. Same regarding this: I do thank my lucky stars I was able to find my way to this community/forum and embed here before FB groups were a thing.
    5 points
  14. .....are there any holes in the mask? tape 'em/plug 'em....you want pure O2 with no room air mix... ....make sure flow is high enough for bag to refill for next breath....you don't want to be waiting... ...some find breathing directly from tube better...just be sure no nose breathing while using mouth tube... ....downing an energy shot (2 oz/5-hr energy type quick, easy, no sugar) on the way to tank enhanced effectiveness immensely for me.... ...absolutely critical to start O2 immediately upon perception of hit...stay on after for as long as it took to abort...if i waited or could not get to tank quick enough there was a point where no amount of O2 would work. since it is best to avoid triptans as only a last resort abort, learning your hit "tells" is vital. is not always obvious to the clusterhead as many report that others around them can see a hit coming before they do....weird but true. ....hyperventilation (some start even before getting to O2 tank) is reported best method....others (me) find slow DEEP breaths just as effective with added benefit of calming effect....another is breathe and hold. try various methods to see which works best....a combination worked best for me (slow/deep/hold..repeat), sometimes within same hits.. ...no, reliable sources of medical/welding O2 will not give you "bad oxygen"....note that scuba tanks are compressed air, not O2 on the off chance this is what you're using... ...schedule changes are poison to clusterheads....a sadly limiting factor for many....i had to maintain very specific routines...especially sleep and eating (low blood sugar a trigger)...
    5 points
  15. ...hi ft...welcome! very interesting post...thanks, herein my comments... Cluster Headaches has no triggers. ...gonna have to disagree....aint no absolutes with CH except the pain. lotsa triggers for me...., but, like you say...when IN cycle They attack in regular intervals. ....definition of CH....then it changes... Certain foods and alcoholic drinks will make the attack periods last longer and the headaches much more intense. .....naw, not for me.... 35 yrs....a hit was a hit no matter the cause... A headache that last 10 to 15 minutes with a beer in your system might last a few hours. ...if my hits hits were 10-15 mins i wouldn't even be posting....90 mins every damn time....tho several cycles the hits were 0-10-0 in 2-3 mins, i was very willing to accept that over unaborted 90 mins.... Alcohol and chocolate for me can trigger an attack while in a cluster period - i got ralnot while I am in remission. Alcohol is the worst. Avoid it at all cost while going through a cluster period. All kinds. Alcohol will only make things worst. YUP! Eats dry soups and teas often. Stay hydrated. ...absolutely but watch them dry soup mixes.....lots with msg (massive trigger for many) in various hidden forms. hydration is critical for CH and many other issues.... Responsibly consume caffeine such as hot coffee. It helps; each individual might have to figure out how to use coffee for their own selves. ....caffeine at the wrong time for me was a trigger.....as an abort ONLY, in the form of 2 oz energy drink, vital. folks really do need to figure this.... A warm shower during an attack can help.LY, i ...hottest setting i could stand on hit spot helped as long as i could stand....hit was back full force when stopped... Relaxation is also needed. ....a trigger for me....20 yrs of hits 20 mins AFTER work stress stopped nearly every day. relaxation in the form of deep/slow breathing of oxygen at first sign of hit, enhanced with energy drink was my salvation... Stress does not cause clusters; stress causes the attacks to last longer and makes it take longer for us to return to remission. ...different strokes for different folks...stress was ALWAYS a prevent for me.....cortisol/adrenaline? dunno. my longest remission was while caring for Ma her last days...and will executor. days after that 5-6 months....BLAM! hits were back to "normal" If you are an anxious person pre- and post cluster periods you may be subject to panicky feelings; panic attacks. This is part it this disease. The pain is intense and during periods you had then will executorve to take time to deal with your feelings so that you can expedite a return to remission. ...the mental aspects of dealing with CH are incredibly important. i considered maintaining sanity thru this nightmare as a lifetime achievement.... You have to remain active and have a regular sleep pattern and wind down after activities slowly - never to fast. ...ok...i walked 5-16 mi/dy on the job, which felt great, but not any effect on CH. maintaining a consistent sleep routine, actually any routine, was very important for me.... I had not had an attack since Oct. 2021 until a little before Christmas Day 2022. I am about three weeks into a cluster period now. Sometimes I get about 8 - 10 attacks a day imainly at night and some early in morning around 9:00 am. Most lasting about 30 minutes and some lasting longer up to 3 hours. I have had these a long time, about 20 years and can share remedies that might helpful to people. Thanks for listening and have a wonderful day. ....do you use oxygen? life changing abortive for me. please do share, we depend on it... best jon
    5 points
  16. @BoscoPiko so sorry to hear about that! My corgi, Norman, is my entire life. So I can sympathize with you. It’s no fun when our pets are down and out. Dogs pick up on our emotions so try to stay positive as best you can! I’ll share a picture of my Norman to cheer you up. do you have any strong ginger pills for the shadows?? Glad to hear the seeds have helped
    5 points
  17. ...woo-hoo kat...good for you....clusterheads kick ass!! ...your experience is so NOT uncommon that it boggles the mind. a business whose express purpose is to provide oxygen to scripted patients yet acting like ..."well, but not YOU"....SMFH.... ....ya gotta look at it as a "game"...i guess i learned it from negotiating business contracts, but it is a lot harder to blow off an anonymous caller or paper requestor than a real live (in our case incredibly HURTING) person. made it a point to meet and engage with a seemingly endless treadmill of O2 shop managers..... so they knew me as a person and not a "file". i aint charming, but the consequences of failure were so high i did my damndest.... with pleasant discussions and reams of medical citation documents. not saying this will always work, sometimes the corporate walls are impregnable....but it worked for me more times than not. ESPECIALLY important, just like getting that first HA specialist neuro appointment, is becoming a "regular". once achieved the hurdles can just magically melt away. and if they don't....clusterheads don't give up....the stakes are just too high......
    5 points
  18. Agree with @jon019 that 240 is a very low dosage. I am on the extended release, and I have always wondered if it has done much good. I did notice a few minuscule changes after taking it for a bit like less attacks when in cycle but that's about it. In the beginning, I was scripted with 160 a day (a joke). I upped it on my own (not recommended) anyhow at one point I upped it to 640 and started experiencing heart palpitations so I backed down to 480. Even now, I don't believe that the verap has had much bearing on my prevention. A newer member on here mentioned that they were trying to avoid pharmaceuticals and I completely agree with that approach, it scares me to know that I am ingesting a substance that messes around with my heart. Nothing that is scripted to us thus far has been developed specifically for cluster heads (at least I don't think), most have had the underlying real approach to migraine, minus the D3 reg designed by good old Batch (a cluster head himself). I am now feeling the need to question my neuro as to why he scripted the ER and not the IR but at the same time I can't help but to know deep down that it's due to a lack of knowledge regarding the disorder I suppose what I'm beating around the bush about is the simple undeniable evidence that some of the best reported medicine has been from nature e.g., shrooms that just grow in the forests, LSD that has been created from mold on rye, seeds from naturally occurring plants etc... To sum this response up and be hopeful, I want to say that I do believe there is a treatment that doesn't need to include foreign ingredients ..
    5 points
  19. I had the same thought as @CHfather regarding the cluster-like HC (hemicrania continua) when you described your 24/7 symptoms @Jackie mielniczek. Even HC is unilateral though - are your headaches on one side at a time (which is a hallmark of both CH and HC)? The thing about topamax is it is a near universally reviled POS for being both ineffective and having the worst debilitating side effects (just as @kat_92 has described her experience), so since it is not helping you at all, well if it were me, I'd get off of it. Hate to say it, but if your neurologist isn't a headache specialist, you should seriously consider scooting on over to a specialist instead. Regular old non-specialist neurologists all too often don't know what to do with us.
    4 points
  20. Have been wondering about this - completely understood how stressy McNerve-Wracking it has to be, but I bet it will be a really successful procedure, and it'll be a case where we end up being really thankful for modern surgical advances. Still expecting to see springtime 2023 photos here of your pup bounding around pain free and carefree. Our Cluster Bunny is like some kind of sociopath in that way. Without reservation I'm sure I can speak for a whole gnarly load of clusterheads here when I say the same back atcha, double!
    4 points
  21. Well I have to say that all of you lift my spirts! I love the light hearted banter and mild jabs at one another. You all make my day each and every time I'm on here. I was speaking to my husband the other night and said to him that if all of social media worked like this site we would be golden. My pup goes in tomorrow morning for surgery and I am sick with worry. It's so nice to know that I have all of you! Of course my shadows chose to kick in big time today when I had to play hostess but .God willing I made it through. You all are the best thing that has happened to me in a long time. I appreciate you all very very much!
    4 points
  22. ...for one easy payment of $19.99 + s&h i can help you focus Shaun....
    4 points
  23. Nope. I have not thought that you silly man! I am old and do not waste my brain thinking about such stuff Shaun. I have enough to think about: Remember my pills, remember to eat, remember to feed the critters, remember to answer you, remember to devil Jeebs, remember to go to the loo, remember to finish my coffee.............................. Leave age out of it and get new glasses. LOL.
    4 points
  24. Have you lot ever thought , it may be us that's at fault . It may be an AGE thing . Just a thought tech and old age don't go together
    4 points
  25. ...no spit....there's a bug!!...i just lost another entire post here. ....and smartphone autocorrect comes from the devil's fingertips in my experience
    4 points
  26. ....no regrets either way Jeebs....as usual we gotta find out for ourselves...share among ourselves....then bring the world into our reality. this one so promising it deserves repeated attention. the potentials for CH and mental health issues demand it....
    4 points
  27. Jus', it really would help if you'd tell us what you are taking now for your cluster headaches. In the meantime, if you feel like it, you might look through this doc that has info about treatments: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
    4 points
  28. I so understand how this could be a favorite as I have a hard time believing that there is a Cluster Head out there that hasn't had this awful thought plague there mind. Sometimes it's hard (especially in the beginning) to imagine living forever this way. As for tracking meds and attacks, I initially used my outlook email calendar. I still shake my head when looking back and seeing my loggings of migraine. I no longer track the attacks as they have continued to morph, making tracking somewhat silly. There is something to be said about a diligent documenter and has proven helpful for some in the past. I now focus on things like supplement packaging, dosing levels and odd happenstances like warning signs as well as the last time I ingested something outside of pharma. Excel is a great tool as you can easily auto sum or create neat formulas like (cell such and such equals this or that). Now days I try and pre-package everything from morning intake, evening intake and for fuc8ks sake intake. It just makes my life a bit easier being able to grab a baggie although I do get the odd looks at Michael's craft store when buying out the small sized drug looking baggies...
    4 points
  29. Alicia, your experience was wretched. I would love to stick all these 'know it all docs' in a room and give them ONE cluster with only each other to look to for help. No meds, no phones, no O2, just each other. Then they can 'judge' the situation. You know, lie down, turn off the lights, etc. Preferably a dozen in a ten foot square room! Glare.......... Yes, it sounds like CH. Yes, they will try the migraine box no matter what if they were educated years ago, are arrogant, or are too big for their britches. My current Neuro did the same thing. I was livid. I had a return appointment and that is the first time that I made my husband go with me for a doctor visit. He made one statement: 'I want my wife back. She leaves at 8pm every night and enters hell with the pain.' The doctor smartly changed his 'diagnosis' right then. All because the MAN said X. Which is infuriating, but did get me what I needed. Not sure of your marital state, but if you are married, perhaps drag him with you for support? Should not be needed, but it can be. The funny thing was that I was referred to him by my NP for Clusters when I had to take too much carbamazepine, was seeing in triplicate and still getting hit. So, my doctor believed me, but the Neuro did not. The suggestion that you drive with a Migraine is nuts! People don't drive with them either! It sounds like she is more interested in seeing you without any relief and in a wreck to boot than out of pain. In addition, O2 does not help migraine. How did she explain that bit? The D3 Regimen is awesome!! It will slow the ramp-up, lower the max intensity, and for many it can prevent a cycle completely. Just get your blood work done on a regular basis and have your D3, Calcium, and PTH checked. If they are good, even if the D is 'high', you will be good to go. The other two items must stay in spec. I would not be surprised if the combo of the Pred Taper and the D3 did end your cycle!!! It has done that for a lot of people - the D3. Neurology Today has even done an article on the lack of D3 in their patients and the issues it causes. I have hardly had a cycle in years thanks to taking those vitamins. There are others who have written on this thread who are pain free due to it as well. Anyway, if she did read to keep up on Clusters, she would know this and she would know that the ratio has finally changed after decades of it being stated that Clusters are 8-9 men to 1-2 women. This is proving out to be false after finally being looked at. Currently ratio is about 6:4 and some are already saying 5:5! So, no, it is not attached to that chromosome at all. I went undiagnosed for over 30 years. I was given two meds in the beginning when this started in my early 20's, but after that, I was on my own. I got migraine 'shots' when it was to the point that I had to have a break from pain. But back then I was Chronic and low level. That mess would do nothing for me today. You did not ask, but for those shadows you can: Eat ginger or make ginger tea, drink some caffeine, try Excedrin for Migraine as it contains caffeine. I'm sure that others have suggestions to add to this short remedy list. Those are the methods that I currently use and remember. Getting old sucks! LOL.
    4 points
  30. Welcome to the club that is not so fun to be in! but we can get you figured out and in a better place. What have you done so fat to treat the cluster portion of your misfortune? Being a welder gives you an edge as you should be familiar with oxygen and how to obtain it. You can read all about that here on this site. Other things you will want to read up on are the D3 regimen, % hour type energy drinks and check out the busting stories section of the site. Ask a tun of questions and everything will hopefully get much better for you physically and mentally.
    4 points
  31. I like to think the Vit D regimen is responsible for your nice remission, but in an attempt to remain objective, and risking going overboard on a technicality, I'd also acknowledge that while typically we find our attacks returning following a prednisone taper (mine always have), occasionally prednisone treatment will put a CH'er into a sustained remission continuing after taper down, and it sounds like that could be an additional possibility in your case. I still like the D theory though.
    4 points
  32. @Alicia Clusterhead if the vitamin d regimen is working please don’t stop it. The side effects are minimal and it’s good to be on year round. I don’t understand how a doctor can tell you to come off vitamins
    4 points
  33. Thanks for the responses guys, it's so different hearing from people who know what you are going through! The good news is that she did agree to send a referral to the headache clinic where hopefully I will be seen by a headache specialist. I still worry that I will hear the same thing there as I did today, but hopefully I will have better luck. Honestly, this site has been such a blessing, especially since I think the Vitamin D is working and this isn't information you can easily find researching Clusters on the internet.
    4 points
  34. I’m really sorry to hear about this. Without being negative, you need to find a new doctor asap. The fact that she wants you to stop oxygen is WILD. From what you describe, you fit the profile. I have seen about 6 neurologists since college…many of them insisted I had migraines. If your blood work is fine, there is no reason to stop the d3 regimen. I am annoyed for you over this.
    4 points
  35. ...yup ...they call him MISTER Tibbs...or rather "Master Member" for a reason.....
    4 points
  36. You know... You @CHfather have helped so many (my self included) on here, I think you get a full pass with PJ wearing, a bit of weight gaining and aging to boot as well! I couldn't re-pay you for all the words I have had the chance to noodle on. Good Man indeed you are. Thanks for being you!
    4 points
  37. Lots of people do it this way -- no prescription required: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/ Your PCP is probably wrong . . . For a long time, Medicaid didn't cover O2 for cluster headaches, but now it does, or at least it can. This is a little complicated -- regional Medicare/Medicaid centers are allowed to determine whether or not O2 is covered for CH in their regions. And of course, you'd need a prescription. Welding O2, as discussed in that link, works fine, with no prescription needed. Since you are new to CH (we don't actually think there is such a thing as "cluster migraines," except maybe for a very, very small percentage of people), you might look at this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
    4 points
  38. Jobo have hit the nail on the head as far as triptans are concerned. They have there place in are God forsaken world , but God so easy to over use because they are right there and can give such great relief in minutes , but over use means prolonged cycle rebound attacks simple as that .Been there done it !!!!!!! Not a good place to be . I jabbed at every sign of an attack a few years ago,I just didn't want to face the pain , I had o2 but didn't really know how to use it . I found this forum a few years ago know ,I've learnt so much . I'm off the triptans just like @BoscoPikoand have learnt how to manage my CH. Again just like bosco I do carry a triptan around with me when I'm out and about if I'm in cycle .Don't want to be thrashing about on the floor bang my head on the ground ,Will end up in a straight jacket (again)
    4 points
  39. Ok Jeeb.. This bit reminded me of pulling a shaunjeeber! This too has happened to me bud. After all was said and done I strangely got kudos for sealing a deal that I remembered noda about. Was later told that I spoke to the trades involved in the project along with current economic escalation impact.. Maybe God has a soft spot for us.. I sure like to believe as much.
    4 points
  40. Some O2 thoughts. (1) Your mask probably has a set of small open holes on one side. Block those so that no room air gets in when you inhale. (2) Some people find that when a tank is relatively low in O2 (maybe 1/3 full or thereabouts) O2 is less effective. (3) If the bag is not full when you are ready to take your next deep inhale, your flow rate is too low. As far as changes in frequency/timing/severity of attacks, many people do experience that.
    4 points
  41. I don't think the walking has any real effect on CH as far as prevention with the exception of a short term abort/reprieve. On some of my super long 3-4hr. attacks I will take a swift walk to get a little "banger break" but they always come back as soon as I sit down and relax for more than a minute or so. Consistent sleep is a biggie for me, interrupted schedule always has me shadowing super bad the morning after. Anyhow.. two cents for what it's worth.
    4 points
  42. Follow up. I have been on Nurtec going on 6 months 1 every other day as a preventative. Migraines are about 1/2 as before the Nurtec and only had 1 bout with Clusters. So far I am happy with the results.
    4 points
  43. LOL I have to admit that this bit made me laugh. I am a lover of all things cheese as well. I think the nixing of dairy is legit to a degree, but I have been on the D reg for quite some time with wonderful results and I have not cut the cheese (pun intended)
    4 points
  44. @BoscoPikoSo sorry to here about 1 of your babies being struck down , but don't worry to much bosco I'm sure she will be fine with you and your hubby looking after her . Get some ginger down you for the shadows (You already know that) shame you haven't got some vit L .could take you out of reality for a bit and the cluster bunny would hate it
    4 points
  45. ...hi be23...welcome....i make no assumptions so some of this may not apply... .....get yourself an Optimask from ClusterO2 Kit - Clusterheadaches.com - Online Store the shop masks are crap... ....your e cart and a 15-25+ lpm regulator from Amazon/Ebay....shop will want to lease at ridiculous prices ...rethink buying "a" tank....you are gonna need at least 3 e's or 2 m-60's. tho tanks don't really expire they do have "expiration dates" that O2 companies have to comply with. testing/recert required periodically..... and they may refuse to refill an uncertified tank and/or private. if you buy ask ahead if they will... ...it may be different now but i refused to monthly lease tanks from Lincare....just did an exchange as needed....worked great. running it by your insurance company may help....your argument being lower cost....the shop more likely to listen to them than you...
    4 points
  46. So true I have a great relationship with my o2 delivery drive (Dave) I can ring him anytime day and night and if he is working he will drop everything he is doing and drop me off new o2 tanks if I'm getting low
    4 points
  47. .....sorry, this is a further thread jack...and liable to be missed by folks who should see it....but, sigh..i need to say..... ....adding a little bit to my "regular" and playing the "game" comments above. it happened to be convenient so i picked up and delivered my own O2 tanks...they loved it, saving them money and hassles.... AND, for me, keeping a face to the "file". also, lugging your own tank(s) with their frigging name on it makes it REALY hard to deny that they "carry tanks". the downside here is that developing a relationship with the delivery drivers can be immensely beneficial. those folks see and hear and "get" the patients at the other end of these tanks. there is many a clusterhead who can attest to delivery drivers going far above and beyond for them. also, never hurts to poke your head into the back room and introduce yourself to the techs who fill tanks and prep equipment..a thank you goes a long ways with folks who rarely see YOU.....
    4 points
  48. I thought it could be something like that, but she made it sound like they simply don’t carry oxygen tanks at their supply…and I was like “well I have one of your M tanks at my house right now LOL”
    4 points
  49. The anticipated completion date of the Yale psilo/CH study is June of this year.
    4 points
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