If you don't already know, I have a sleep disorder called Obstructive Sleep Apnea, or OSA for short. It means that I stop breathing in my sleep. That also means that, while I stop breathing, my oxygen levels drop, my heart races, and I wake up.
Forty five times an hour, on average.
You can probably see how this could be a bad thing.
It affects me in other ways as well, but those are the highlights.
There is a treatment for it, and one that works vecy well for me. That's a CPAP machine. It forces air through my throat, which means my throat can't collapse, so I don't stop breathing. I love that machine. It worked great!
Alas, it's been having problems lately starting about a month ago. Added to that, we've had more than our usual share of overnight power outages, and the result is that I haven't slept well in about a month.
Fahim and I finally located a local reseller of CPAP machines, but not only do they not have any in stock, they don't know prices, nor do they even know which models they can get in.
Two and a half weeks later, and they still don't know.
We can order one in from the US, and that'll likely triple the price and be a huge nightmare as far as customs is concerned. We haven't ruled it out - we're just looking at options.
We can fly to India or Dubai or something, but again, that'll dramatically increase the price. Still, not ruled out.
Meanwhile' I'm going downhill. Hallucinations are already a regular part of my life again, as are the constant headaches, fatigue, and general feeling like crap.
Why am I telling you? Why not? Gotta amuse myself somehow.
Oh the life I lead.
Oh yeah. Just be glad I don't drive. Sleep deprived drivers are more dangerous than drunks, from what I've read. Bob can likely confirm that. Posted by Noemon (Member # 1115) on :
quote:Fahim and I finally located a local reseller of CPAP machines, but not only do they not have any in stock, they don't know prices, nor do they even know which models they can get in.
And by what criteria are they considered a reseller of CPAP machines?
What's the expenisve part of ordering it from the US? Might it be possible for one of us to get you one and ship it to you, and have you wire us however much that ends up costing? Or would that be just as expensive as your buying it yourself?
Posted by Kwea (Member # 2199) on :
I can look into buying one, maybe...I promise this isn't an internet scam.
There are a few place near to me that sell them, I think. I will get you prices, if you want, providing I can find them...I am new to this area, remember, so thatis in no way a givem. Posted by quidscribis (Member # 5124) on :
quote:Originally posted by Noemon:
quote:Fahim and I finally located a local reseller of CPAP machines, but not only do they not have any in stock, they don't know prices, nor do they even know which models they can get in.
And by what criteria are they considered a reseller of CPAP machines?
What's the expenisve part of ordering it from the US? Might it be possible for one of us to get you one and ship it to you, and have you wire us however much that ends up costing? Or would that be just as expensive as your buying it yourself?
Because they have a contract with a manufacturer of CPAP machines. I checked on the manufacturer's site. Yeah, hardly heartwarming.
Expenses, other than the machine itself include shipping ($100+ US) and import taxes, which will likely be equal to or greater than the cost of the machine - they ding heavily for all electronics entering the country. So now, the cheapest machine I can find at $300 (and this is an excellent price - when I bought my dead machine 7 years ago, I was happy to pay $1400 CDN, or about $1000 US) will now cost at least $700 US, and likely more. Flying to India might just end up being the most cost effective approach.
We can afford it if we have to. We'd just like to find a way that's cheaper, if we can.
Oh, and to complicate matters, this is Ramadan, so Fahim is more tired, headachy, and irritated than usual, and his ability to travel and run errands and the like is severely hampered. Yeah.
Posted by quidscribis (Member # 5124) on :
Oh hey, there are lots of places we can buy one from over the internet - accessibility isn't the problem. Accessibility and not outrageously priced - now, that's the key.
Posted by Kwea (Member # 2199) on :
Ouch...that is WAY out of my range to buy, even as a temp purchase.
I hope you figure it out, and it works out for you ASAP. Posted by ketchupqueen (Member # 6877) on :
Oh dear. *prays*
If there's anything we can help with you can't do yourself or that would be much easier for us-- calling US manufacturers and harassing them about parts or specifications or the like, or anything like that-- please don't hesitate to ask. Posted by quidscribis (Member # 5124) on :
Kwea, I appreciate the offer and the spirit in which it was offered.
For us to buy from an American company and to ship it is easy - there are plenty of places on the internet that are set up to do that, and I've dealt with some before. I know which are reputable. That's not the problem. It's the massive expenses getting it into this country that's the problem. Or, rather, where the hate is.
kq, thanks. You're very sweet, and of course I'll take your prayers. I'll let you know if anything comes up.
Edit because, last time I checked, players!=prayers.
[ October 20, 2005, 06:51 AM: Message edited by: quidscribis ]
Posted by Enigmatic (Member # 7785) on :
quote: Oh yeah. Just be glad I don't drive. Sleep deprived drivers are more dangerous than drunks, from what I've read. Bob can likely confirm that.
My narcoleptic friend and his three totalled cars can also provide some anecdotal evidence along those lines.
--Enigmatic
Posted by Tante Shvester (Member # 8202) on :
Hmmm. They sell those on ebay.
Posted by erosomniac (Member # 6834) on :
Don't bother trying to buy them on eBay, they're very much against eBay rules and policy (since the use of a CPAP machine is governed by prescription in the U.S.) and eBay likes to randomly take them down and reverse the transactions on the ones they can't. Or at least, that's what they did to me. Bastards.
quid, do you know if labelling an item as a gift will help? It does for most countries - it avoids the bulk of duty taxes. If this is the case wherever you are, I (or someone you know better, probably) can find one and send it.
In fact, I think my company (an eBay consignment company) took one in recently...if we haven't returned it yet, that may be a viable option. I think the consignee wanted roughly 300 for it, including new hoses and mask.
Posted by erosomniac (Member # 6834) on :
Just checked the database - we have both a CPAP machine and the humidifier unit. Do you need both? Do you want either? Let me know.
Posted by quidscribis (Member # 5124) on :
Enigmatic - uh, yeah, that's pretty much what I was talking about.
Tante - I know. I checked them out. For the price they end up selling for, I may as well get new - there's not enough of a savings. That combined with no tech to service the thing if I have a problem, and I'm really better off with new.
UPDATE: Fahim called that company, and by coincidence (translation: they probably heard days ago but were too lazy to call. Or didn't think we were serious about buying), they heard back from the manufacturer today and will have pricing and shipping (ie how long it will take) info for us later today.
Posted by quidscribis (Member # 5124) on :
Labelling as a gift helps with most things, but this is a large enough item that it will go through the central post office, which means it will be opened, and once they see what it is, because it's electronic, they'll charge. Guaranteed. They charge even on demo items, free software, etc. Even when you can prove it.
I would never use someone else's mask, aside from me probably being allergic to it (chemical sensitivities to the oddest things, including the majority of all nasal masks) and it never fitting (I have a very small nose). Sharing someone's snot? Ew!!!!!!
Humidifier - no.
We'll likely go with the local company, assuming they come through, and that's vhat ve prefer to do. If the item is damaged during transit, we don't have to eat the cost. I'll keep yours in mind, though, erosomniac. Thanks for the info. Posted by Shigosei (Member # 3831) on :
What if we bought one here, disassembled it, mailed it to you part by part, and you put it back together there?
Posted by Bob_Scopatz (Member # 1227) on :
I'm assuming your old one is completely dead and impossible to repair.
did the Electronics burn out or something else?
The reason I ask is that, for next time anyway, it'd seem to be wise to have a backup CPAP around when your primary one starts to go bad.
(((quid)))
Honestly, the data on sleep deprivation in driving aren't that reliable, but I suspect that people who hallucinate are at higher risk for crashes than those who do not, whatever the cause of the hallucinations.
I do hope this situation is resolved soon. Sounds horrible. I complain about waking up at 4 am all the time. I can't imagine waking up 45 times an hour gasping for breath...
Posted by quidscribis (Member # 5124) on :
Rotor something or other. Fahim's going to see if it can be fixed. On a whim. And I'm somewhat serious about that.
CPAPs are calibrated for the correct pressuce for each patient. My brother's apnea is about as severe as mine. but he requires 20 cm of water (and I forget the rest of the units after that) whereas I require 8, and certainly no more than that.
If my brother were to use mine, he would continue to have apneic events. If I were to use his, I wouldn't be able to exhale past the pressure (this was proven even better after general anaesthetic, when I had huge problems exhaling past my normal pressure. Huge huge huge problems.)
Even if we can get the rotor replaced, I'd still have to find a way to calibrate the pressure. In a country without qualified technicians, never mind the proper equipment..
CPAP backup a good idea? Yeah, I'll agree with you on that one.
Oh, I should mention it doesn't feel like I wake up 45 times an hour gasping for air. It feels like I never fell asleep. Or I slept like crap. Really bad insomnia, even. Only once, maybe twice, in the decades I've had this, have I ever noticed myself gasping for air.
Posted by quidscribis (Member # 5124) on :
quote:Originally posted by Shigosei: What if we bought one here, disassembled it, mailed it to you part by part, and you put it back together there?
Brilliant!
Posted by Noemon (Member # 1115) on :
So quid, how common is bribery there? Is it possible that things are taking a long time because people are waiting for you guys to grease wheels or something?
Posted by Jim-Me (Member # 6426) on :
Mine just bit the dust, too, about two nights ago... Erosomniac, do you still have the one?
Quid, I soooo feel your pain. Life without CPAP is very bad for me. When I did my sleep study, they went ahead and let me try a CPAP machine for the last hour of it... one hour of real sleep and I felt a decade younger. It was truly frightening, the difference it made.
Posted by Shigosei (Member # 3831) on :
Hmmm...I've been really fatigued lately...*goes to look up sleep apnea*
Posted by mackillian (Member # 586) on :
quote:My narcoleptic friend and his three totalled cars can also provide some anecdotal evidence along those lines.
quote:Hmmm. They sell those on ebay.
Those two sentences should not be that close together in posts.
Posted by quidscribis (Member # 5124) on :
Noemon - bribery is extremely common here, but not in these circumstances. It's more likely that they'll roll their charges into the price of the machine. And that's also why Fahim is making the phone calls. If it was me calling, the price would end up much much higher. But no, that's not why it's taking so long. That's because everything here takes a long time and no one is ever in a hurry and efficiency has no meaning.
Jim-Me - yup. You understand perfectly.
They didn't call back yesterday, which is, of course, no surprise. Fahim will have to call them again. Sigh.
Posted by rivka (Member # 4859) on :
Any luck, quid? Jim?
Posted by Jim-Me (Member # 6426) on :
none yet... there's a place here that can fix mine, but they have to have a prescription to do it. Which means I have to go through the sleep study all over again because the company that did my original one is no longer in existance, so I have no idea where to go for the medical records... grrr...
Posted by Theaca (Member # 8325) on :
The doctor that ordered the study would have it...
Posted by erosomniac (Member # 6834) on :
Yes, the one we have in the store is still there - drop me an e-mail, and we can talk about getting it to you?
Posted by Dead_Horse (Member # 3027) on :
I sympathize, quid. A month or so ago I had to get a new machine because I had taken mine over to my husband's house and he refused to let me take it when I left. It was a long 3 days getting a new one, and now I have to have another sleep study, too, or the insurance won't pay for it because it's been 6 years.
And now you've been 5 days! I hope you get one soon.
FWIW, when we used to send my brother and sister-in-law stuff to Sri Lanka, when we wrote on the box what it really was, like tools, or chocolate, they never got it. But if we wrote "educational materials" they got the box intact and unopened every time.
Rain
Posted by Ryuko (Member # 5125) on :
Wow, now I feel guilty for being so irritated that I can't keep mine on... At least my problems aren't even half as bad as you guys'.. Good luck quid... :/ Wish me luck in trying to keep from tearing my mask off!
Posted by ketchupqueen (Member # 6877) on :
Ryuko, have they suggested prongs to you instead of a mask? My mom says that can help.
Posted by ketchupqueen (Member # 6877) on :
Dead Horse, isn't it illegal for him to not let you take it?
Posted by quidscribis (Member # 5124) on :
rivka - no, no luck yet. Fahim will make calls today.
Jim-Me - that sucks, so completely. Does your primary physician have a copy of the sleep study? In Canada, they do, and I then got my primary to issue me a prescription for travel purposes (airport security) which can easily be used for other purposes.
Deadhorse - um, no, mine first started acting up just over a month ago and finally died completely about 3 weeks ago. But "educational materials" - that's something I haven't tried. Thanks for the tip. And for the record, that man needs to be horsewhipped for keeping your machine.
Ryuko - be patient. That's normal adjustment problems. It'll get better. But yes, by all means, try the nasal pillows. They're much easier for many people and far less claustrophobic.
Posted by Ryuko (Member # 5125) on :
Ketchupqueen and quid: I haven't thought about pillows, but the problem's not claustrophobia I don't think. It doesn't bother me at all, except that sometimes it doesn't ramp up fast enough, and I want to breathe out of my mouth. I was thinking about getting a full face mask for that reason. I almost always take it off when I'm asleep, so I really have no idea why. Posted by quidscribis (Member # 5124) on :
How long have you had it now? And you know you can bypass the ramp, right? I haven't used that since my very first month on the machine.
Posted by Jim-Me (Member # 6426) on :
I got the doctor through the sleep clinic... I don't even remember his name. I haven't had a primary care physisican in a while, so it's pretty well lost.
Posted by Ryuko (Member # 5125) on :
quid: Almost a month. It's the tester machine and there's no way for me to mess around it.
Posted by ketchupqueen (Member # 6877) on :
Ryuko, call the doc who prescribed it for you and tell him/her about your problem. There might be something that s/he can suggest.
Posted by quidscribis (Member # 5124) on :
Ryuko: you can bypass the ramp most likely. Let me guess . . . You put your mask on, you breath, and you wait for the machind to turn on automatically, right? Instead, turn it on manually. Press the on button, wherever that is, and that usually bypasses the ramp altogether.
Alternately, call the company that provided you with the machine and have them walk you through changing the settings over the phone. It's fairly easy to change these things - it usually takes about 30 seconds. (My respiratory therapist was also a friend from university days. I learned all sorts of stuff from her. )
JimMe, can you locate the name of the doc anywhere? What if you contact the state licensing board and ask for the names of all sleep specialists? Would going through that list - and it won't be very long - twig your memory?
Posted by Ryuko (Member # 5125) on :
Nope, Quid, it's automatic. It starts at 5.0 and goes up according to the pressure it feels in my body. Faaaancy. Which reminds me, it neads cleaning. Posted by Jim-Me (Member # 6426) on :
it probably would, but he wasn't a sleep guy, he was an ENT guy... and you can bet there's tons of those in Dallas alone.
Thanks for the suggestions, but if I don't find one second hand it's probably going to be easier just to get a new study done...
Posted by ketchupqueen (Member # 6877) on :
Jim, do you remember where you got the machine you have? Would it be possible to call them and get the doctor's name?
Posted by Theaca (Member # 8325) on :
And the company supplying your current machine ought to have a copy of the original report and the doctor's previous order in their files. But the documentation needed for these things is just ridiculous sometimes. I have to do a whole page of documentation of the necessity if I want a patient's CPAP oxygen to be warmed and/or humidified. Sleep apnea documentation and paperwork absolutely drive me up the WALL. Then the person moves or something breaks and it's like starting all over. It just doesn't make sense to me.
Posted by ketchupqueen (Member # 6877) on :
Theaca, why are the machines so heavily regulated? It seems to me it's easier to get large doses of narcotics.
Posted by Theaca (Member # 8325) on :
Most of it is insurance related, I'd bet. CPAP equipment costs more than narcotics maybe? Although narcotics add up and CPAPs last awhile. In any case, the more hoops the insurance companies require, the less doctors tend to order and that saves money. After awhile the documentation begins to seem important. And it IS important, to some extent. But there are limits.
But there are hoops for narcotics too. Paperwork, documentations. Bleh. Worst medication hoop I've seen was for this girl with rheumatoid arthritis since age 16. She had it in great control and then moved across the country with her husband. Came to me to refill her medication X because it took 2 months to get in to a local rheumatologist. The insurance company sent me a form. They wanted dates, all the drugs she was on, how long she was on them, why she couldn't be on those drugs rather than expensive drug X, all the docs she had seen, the dates of hospitalizations the past 10 years, etc. She's had the SAME insurance for 3 years! She's been on the drug 18 months! And I, of course, had none of her old medical paperwork yet, as it takes time to get records transferred. The amount of detail impossible to guess at. I think I finally lost my temper and yelled at the woman on the phone who was being so obtuse about the whole thing. But, hey, until all the right papers got sent in, the company didn't have to pay for the drug. The patient did. $1000 a month or something like that. Some of my details are a bit fudged, because I don't remember exactly, but you get the idea.
Oh, don't get me wrong, documentation of medical problems and narcotics is very important, as are checks and balances. And more narcotic monitoring goes on than it appears. But when documentations are stretched out to waste the doctor's time and save the companies a few bucks then it is very frustrating.
Posted by ketchupqueen (Member # 6877) on :
Oh, man. That's awful.
I guess moving is always kind of a pain for things like that.
Posted by Theaca (Member # 8325) on :
Haha. You should see the form I had to fill out on this lady with such severe urinary incontinence that she needed adult diapers. I couldn't just order the diapers. Oh no, I had a two page form to fill out about my plans, treatments, goals. In detail. I had to rewrite the whole dang thing yearly, too.
Oh, wheelchair repairs. Wasting my time documenting why the patient needs a new headrest or padding or whatever. Luckily the medical supply places and home health nurses help fill those out. But even then I have to sign them personally.
Posted by ketchupqueen (Member # 6877) on :
Freaking crap! That's insane!
I hope your patients love you.
Posted by Theaca (Member # 8325) on :
Some are so grateful it's kind of sad. One wonders what other offices did to them. Others act like it's OUR fault they have to wait a week or more for the papers to go through. It's not like they sit on my desk more than 24 hours.
BTW, this is why so many offices won't take medicaid. The paperwork medicaid requires for EVERYTHING is incredibly time consuming for offices and staff, and they get paid squat by medicaid. We can make tons more money dealing with just other companies. My current office won't do medicaid. Just isn't profitable for an office as small and struggling as ours.
Posted by ketchupqueen (Member # 6877) on :
Yeah, I've noticed that many offices that take medicaid are older doctors that have already made their money, or are state-established and largely underwritten.
Posted by quidscribis (Member # 5124) on :
I didn't go the insurance route to buy my machine - didn't have insurance to cover it. But I worked for my friend's respiratory therapy company (accountant) and saw the amoung of paperwork they had to submit to the insurance companies. It was horrendous. Frequently, patients gave up on treatment because the paperwork was too intimidating.
How sad. And quite frankly, how very wrong of the insurance companies to make it that difficult to get proper medical treatment. *grrrrr!*
Posted by quidscribis (Member # 5124) on :
Update:
So we got a call from the local reseller of CPAP machines three or four days ago. Finally. They want to charge Rs. 88,000 (about $880 US) for a CPAP machine, undisclosed model (they sell for as low as $250 or $300 US in the US) with no indication of how long it would take to arrive.
They didn't even ask if we wanted it. They just gave the info to Fahim and then hung up. Lousy customer service.
And I just received an email from a Hatrack friend and lurker - sweet, sweet lady - offering her old CPAP because she doesn't need it anymore. (She was upgraded to another machine.)
Yep, there are good and decent and kind people in the world, and some of them hang out here. Nice to know, isn't it?
But I declined on both counts.
Why?
I can see the eyebrows raising. I can see thoughts of craziness running through people's heads. Oh yeah, I can.
It's a bit of a bizarre story, but it's all true.
About a month or so back, I came across a website that has, for free download, an ebook that that gives instruction for using their Emotional Freedom Technique. Yeah, a bit of a dorky name, but whatever.
So I figured that there's no harm in trying it out - all it'll take from me is time. I'm so beat up from not sleeping that I'm not good for anything anyway, and really, what do I have to lose?
Absolutely nothing.
So I read it and applied the techniques. That night, I slept far better than I had since my CPAP broke down. A few more days of applying the technique, and my OSA symptoms are gone.
No more hallucinating, no more morning headaches, no more getting up to pee in the middle of the night, no more needing to sleep 12 hours to make up for lousy quality sleep, no more taking two hours to get rid of that awful groggy feeling. In fact, I was about 90% of the way back to how I was with my CPAP after the first day or two.
Huh. Not what I was expecting, that's for sure.
Anyway, I'm still using it and applying it to my sleep, and making improvements, and happy to say that, what with the symptoms of my apnea being gone, it's looking like I may not need a CPAP any more after all.
Bizarro world. Posted by Nell Gwyn (Member # 8291) on :
Yay for not needing the CPAP in a land of uncertain electricity!
I was wondering about that just the other day. Hope it keeps working for you!
Posted by Belle (Member # 2314) on :
Jim-Me, call your insurance company. They'll have a record of who they paid for your sleep study, and that will get you the name of the doctor so you can get your prescription.
I needed the name of the anesthesiologist that did my surgery and it wasn't on the hospital bill, so I called my insurance company and had the info in about three minutes.
Posted by Noemon (Member # 1115) on :
Cool that you've found something that works for you, quid! I'm glad to hear that you're doing better.
Posted by aspectre (Member # 2222) on :
Quid, has the technique you were using continued to be effective?
Posted by quidscribis (Member # 5124) on :
Yup.
I've been using it to improve things, and now, I'm at 100% of where I was before the CPAP machine died.
I have occasional insomnia, but I had that before the CPAP died, so it's nothing new, and it's going away again. I usually get it for one or a few weeks at a time, then it goes. It's going. So, it's following the regular pattern. Although, in all honesty, it's also not as severe as it has been in the past.
As far as symptoms of apnea goes, I have none. Not one single one left.
I also used that technique to get rid of eyestrain, which I used to get every single day, usually within an hour or two of starting to use my laptop, so by the end of the day, I'd have terrible eye pain. It's gone, and has been since the first time I used that technique.
I've also used it to get rid of my headaches. That was a bit more stubborn and took a couple of weeks of using the technique, but I realized yesterday that I haven't had a headache since then, not even a mild background one, and that's unusual for me.
Yep, it's working. And I'm real happy. Posted by Noemon (Member # 1115) on :
That's great! I'm glad to hear it. Posted by quidscribis (Member # 5124) on :
Thanks. Me, too, Noemon. Better yet, I'm glad to be living it. It's fantastic to be able to breathe normally. Posted by MandyM (Member # 8375) on :
quid, this EFT is facinating. My hubby suffers from apnea to the point that he needs to do a sleep study but his new insurance hasn't kicked it and we can't afford it any other way (and he is less than willing to go anyway). We can't sleep in the same room most nights because his snoring is so bad. I am going to read up more about this and I'll let you know how it goes.
Did you just read the free manual from the site or did you order anything? It seems so easy.
Posted by quidscribis (Member # 5124) on :
I've paid no money, nor have I ordered anything. I'm cheap, and my husband is cheaper. Everything I've done is from the free download.
There are some other considerations.
Before I started treatment for my apnea, my results showed that I had 45 apneic events an hour, which is mild-moderate. After I'd been on treatment for a few years, my number of events was much lower (results from another overnight sleep lab), but I don't remember the exact number. The theory is - and I've read a lot of supporting documentation about this - that, when a person suffers a lot of obstructive apneic events where the throat collapses (which is mine), it can cause physical damage to the throat which can make the apnea worse. The years of successful treatment allowed the throat to heal. Actually, it probably only took a few months, but whatever.
So part of what I'm saying is that this method might not have worked had I not had CPAP first, or it might have taken a lot longer to work given that the throat was damaged. I don't know, nor will I ever know.
There's a link above on the Didgeridoo thingie - it actually made the news in Sri Lanka, as well. The short version there is that learning to play that instrument over the course of several months can also improve snoring and apnea, so that might be another avenue to consider, especially in light of your husband's resistance to getting treatment.
Personally, if this was me, at the beginning of considering treatment, I'd be inclined to use EFT while I waited for the doc's appointments and for the sleep lab. I can't guarantee that EFT will work for your husband, and I wouldn't want to count on it until or unless it actually did. Apnea is far too serious. And I would still go to a doc and have an overnight sleep lab done.
But like I said, since he's going to wait anyway, there's no harm in giving it a try. And that's something I absolutely would do. It costs nothing but time.
And yeah, it's freakishly easy for the results I've gotten. That's why I keep calling it bizarro.
Good luck. And please, keep me updated on what happens. I'm curious... Posted by Tante Shvester (Member # 8202) on :
Interesting. I wonder if it could cure my lupus. This is a pain in the butt condition to have. My case is pretty mild, but there is always the worry of some life-theatening complication surfacing again.
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Brilliant!
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