Interesting Side Effect

The last few days here have been hot, record breakingly hot, with today at 113 degrees. Overnight it has been in the 80's.

In my previous life, before CPAP, I really struggled to sleep in the heat. Amizingly, now I'm breathing compressed air, I'm sleeping vey well despite the heat. I know I pass out as soon as I turn the light out, and wake when the alarm goes off.

I love my little bedside companion!!

Cheers

K

PS We get some relief next week; most days around 90 only!

I know exactly what you mean, I live in Adelaide so we are in the same heat wave, it was 113 here a couple of days back but the thermometer in the shade under my verandah actually reached 50 degrees celcius (122 in fahrenheit!) I really struggle in the heat as i have MS and most of us with MS struggle with temperatures considerably less than this. I am new to all this CPAP/BIPAPstuff,, i have had my diagnostic study and tiration study and starting using a Respironics Bipap Auto SV 2 weeks ago (after being dx with complex sleep apnoea), at the moment they have a long way to go to get good readings as supposedly my AHI is still around 94, we are waiting to get some feedback from my Sleep physician but even with those figures i feel like i am getting much better sleep- i too have been able sleep through the night despite the temp only getting down to the 90's the other night, i got to sleep quickly and woke feeling pretty good when the alarm went in the morning!

Glad to hear there may be some relief in the temperature soon, i have been too scared to watch the weather forcast, this time last year we had 15 days in a row with temps over 100, i ended up in hospital as the heat caused problems with my MS- i am hoping things don't get to that point this year

karen

Sorry to hear that you're struggling, it can be really tough, and we can't do much about the weather!

Actually, I quite enjoy the hot weather, although having a few days in a row tends to get a bit wearing. The saving grace has been that the RH% has been pretty low. I'm just intrigued that with CPAP the heat has no effect on me during the night. I was in Far North Queensland over New Year, and the humidity was extremely high, and very uncomfortable. Despite that, I slept like a baby (a real baby, not a John McCain baby) I'm fortunate to be able to still play an active sport, but I'm not looking forward to 7.00pm on Monday, playing hockey in 37 deg C

Is your machine data capable, and if so, do you have software and a reader. My experience was that until I got the software and started collecting data, I didn't make much progress, and as soon as I could see what was happening I was able to bring my AHI's down from 15's and 20's to generally less than 3.

Suggest you go to the control panel, list your equipment, and if you can, upload some data. There's a wealth of experience amongst the members of this board, and they'll help you to get the best results from your therapy (and probably faster than the pro's)

Wishing you a cool change

K

I have only been using anything at all for a bit over 2 weeks, my sleep physician sent me to a supplier and he prescribed a Bipap such as the respironic bipap auto SV or the Resmed Vpap adapt sv because i had a mixture of OSA and Central. He believes that the MS has led to decreased level of function of both the intercostal muscles and the diaphragm rather just the usual upper airway obstruction. He also said that the MS and some medication that i basically cannot not be stopped are leading to the centrals. He sent me to one particular DME because he felt that they had a bit more expertiese in the more complex problems. They have loaned me the Respironics machine to begin with and i have returned every 3 days to have the data read and for some reasons the AHI has jumped up to 94 to 98, they tell me they cannot distinguish between the Obstructive events and centrals, they have not given me any other data so i do not know how many are apneoas and how much are hypos- either way i feel better with this than without it! Anyway, they have been emial him the data but it seems like he has been on leave. The DME wanted me to try a straight cpap and sent me home with an remstar series M auto with C flex, they set it to 5 to 20 and i was willing to give it try but concerned as my physician had said this type of machine had dealt with the obstructive events but not the centrals- it turns out it was this type of machine that was used in the sleep lab. the sleep lab had found that i needed high pressures of 17 to 20 to get my oxygen sats up and deal with the obstructive events ( my oxygen sats go to the low 70's and on at least one lengthy event dipped down to 53).

I did try to use the CPap but could not get to sleep because it felt like i was suffocating, it was hard to tell whether any air was coming through at all whereas even in the lab i was aware of the air coming through the mask- i kept waiting for the level to adjust so i perserved for over an hour but could only do that by removing the chin strap and mouth breathing everynow and then! In another thread it was suggested that needed to be asleep before the machine would work out the correct rates and i understand that but even after an hour the readout was still down on 5, There is no way i could get to sleep without more air coming trhough. with the previous machine they had reduced the level to 16 at one stage to see if that would get the AHI down and although that did not feel enough i preservered and did get to sleep but found in the morning i had removed the whole gear in mysleep- the only way i managed to keep that one on at 16 was to remove the chain strap and then the data apparently had a high leak figure. at the higher levels i keep the mask on all night adntolerate the chin strap and leaks have not been a problem. The DME staff had commented that somepeople who do not get good results on the respironics bipap sv do better on the resmed. And from doing some reading based on info i have been directed to by folk on this board it sound like the resmed may be worth a try but the DME did not want to try that yet. They have let me have the respironics machine back until we can get somemore guidance from the DR. I have told them that i would try the straight cpap but felt they needed to change the bottom number on the settings - but i still worry about the centrals, I also know that in the titration study i kept on waking up because of the feeling of breathing out against the high pressure, so at very least i believe i need a bilevel machine.

I really would like to try the resmed machine, i worry that as MS is degenerative neurological condition my needs could change in time and i may not be able to work a great deal longer so i do not want to buy one machine only to find i have to try to find the cash to buy something different . I certainly want to get the software to get the data myself- my background is nursing and i have a number of complex medical problems and have always dealt with them by being pro active and working directly with my treating Dr's but unitil the machine business is settled it is not really an option but i think i will have to put my foot down and insist on getting more data from the DME instead of them simply saying they will send it to the MO. I have sent away for an oximeter that will record data, so at the very least i can keep track of some of my results. I bought that online so hopefully that will arrive in the next week

Anyway, back to the weather- we had our hottest night on record this week it was just under 34 degrees! i have usually struggled to sleep in that sort of heat but i was using the respironics machine and was sleeping well despite the supposidley poor data- they only thing i can think of is with any kind of sleep apnoea our sleep is poor quality, i think from the sleep lab report i saw, less time is spent in deep sleep so it takes far less to disturb sleep- i think that as soon as the sleep quality improves and we get to deep sleep more of the time it just takes far less to disturb sleep- it seems logical when i think about it

I wish you well trying to play hockey in this heat! Hockey was my sport in younger healthier days (i played in Goal) I will be thinking of you!

karen

Karen,
Since you're being given loaners, it migh be worth your while to buy software for Both Resmed and Respironics machines, to help you understand how they treat you - and maybe tweak them to work better.

Once you've decided which machine to buy, you may be able to sell the unneeded software to someone else.

O.

Hi Karen

I agree with ozji. Being able to read the data makes a huge difference. I use a Resmed auto, and I'm very comfortable with it. I know you're self funded, just like me, and everyone else in this country with such an enlightened health care system (not) but if you can get hold of a resmed auto with the USB adapter, I can help you with a copy of the software. Let me know.

I wish you luck with your complex health issues. I'm sure it's a pain, but I can assure you that getting the CPAP treatment working is a revelation. I'm now a new person.

By the way, I was a goalie too, until circumstances about 15 years ago gave me an opportunity to switch to the dark side. So I had the surgery, and had my IQ increased, and started playing on the forward line. Now I'm a centre forward,and I hate keepers!

Monday at 7.00pm will be about 36 (97 deg F for our American friends) so I'll enjoy an hour of running around, then have a cold beer, or 2, or 3, then have a shower and I'll sleep like a log.

Here's hoping you can get to that stage yourself

Cheers

K

hi to my neighbours in the south! have been following the horrific weather and my heart goes out, used to be a melbourneite (also love SA). i never used cpap until i moved to the tropics so i dont have anything but hot and humid to compare to, but somehow i did seem to find it easier to sleep when it got really hot with the cpap on..a very interesting side effect indeed.

who would have thought you guys would get slammed with such heat, when we are supposed to be the ones...i only remember 1 day last year we hit 41 with 95%humidity, i hope it gets cooler soon.

all the best

Thanks for the offer of software K, i will keep it in mind when we work out the next step. I am a bit reluctant to splash out for multiple versions of software simply because i do have to be careful of finances at the moment- having said that i know that i need to get this sorted and work out what machine i will have long term so that i can get the right software and start trying to take control of some of this stuff- the ínteresting if not disturbing thing about the DME is that once the sleep physician referred me to the DME, it is them that are altering the settings and reading the results- they only seem to focus on the AHI and when i asked how a figure of 98 was possible using the Bipap SV when it has been set to a background resp rate of 16. if each event is suppossed to be a mininum of 10 secs it does not seem possile, especially when i actually feel like i have slept better- the response was that they do not really understand the finer points of how these things work especialy the more complicated machines like the BIPAP SV- that was a scarey comment, it sounds like an admission of we do not really know we we are doing, its just a bit of trial and error!- At least they have admitted they need more guidance from the Doc, its just a pity he has gone on leave!
based on the original conversation i had with my Doc and so other information that i have been given here and there i really would like to give the resmed version of the machine i think it is called the Vpap Adapt SV, i think that has a better chance of working than the straight CPAP- i am not prepared to ignore the centrals especially when the theory is that it is the MS that is the culprit

anyway everything is on hold until we get feedback from DOC, in the meantime i will keep reading so i can understand this stuff better- at the moment i have a very broad under standing of the basics but not enough to start challenging the DME's. I wish i could get them out of the picture and deal directly with the Dr, especially now that the person i have been dealing with has admitted to being sales person rather than some kind of practioner

have fun at hockey- how devious, a centre who has been goalie in a former existence!

41 and 95% - I think I'd brave the stingers and sleep in the ocean.

We've been pretty lucky here since the RH has been quite low for the 3 really hot ones. The best way to deal with the heat when the humidity is low is to sit in front of a fan and wear minimal clothing so as to get the maximum cooling effect. Doesn't quite work in my office (all my women staff would resign if they saw me in shorts, let alone without a shirt)

The only explanation I can think of for the extra sleep comfort with CPAP is that we are able get into a deeper sleep, so we don't keep waking up. I love that little humming sleep companion beside the bed!

K

hey k,

the stingers dont worry me, its the crocs, they actully come out onto the beach and then back in the water inside the stinger nets. but at the moment while you are frying eggs on the bituman, we have cyclone ellie bearing down on us, fortunately i am not that far down the coast, i am further up towards the cape but we are getting the gale force wind and rain for 3 days straight. isnt fair, wish we could bottle it and truck it, rail it, pipe it something it down to you lot!!

ps have aircon in the bedroom but when the power goes out we have slept outside near the pool, no crocs no stingers!

cheers gvd

I was in Port Douglas over New Year. I heard that there were sharks inside the stinger net one morning, but I didn't realise that the crocs went into the ocean.

What part of FNQ are you in?

K

between ellis beach and port douglas now have just moved down from way up past cooktown, and yes there are crocs everywhere around here!! stay away from the beaches and estuarys this time of year as they are breeding and fiesty. we had one in the lagoon two blocks from our house, almost ate a dog and the kid. happliy it was captured without eating anyone/thing and set free far far away!

gvd

They don't bother me. Once they get a taste of my leathery old hide and stringy legs they'd spit me out and find something juicier.

Crocs!! between crocs sharks, stingers and blue ringed octupus, i knew there was a reason i don't like swimming in the Sea, I went to far north queensland a few years back- my first trip after having my leg amputated and getting my first prosthesis. It was an interesting trip! for starters i had been provided with aprosthesis that stayed on by using a silicone liner that clings to the skin. when they work they provide a very stable limb-unfortunately the system i used was desinged in iceland and i do not think they ever dreamt of the sorts of heat and humity in the farnorth- i kept losing my leg if i did not take off to ëmpty it out and dry it every hour. This should have been a warning i guess.

we went to the daintree river to do the touristy bit of a cruise up the daintree river, as mentioned i was still getting used to the whole artificial leg thing and definately needed crutches- when trying to transfer to the boat from the jetty, the aft of the boat started to drift away from the jetty so the gap between the 2 was getting bigger- now usually i would have thought the worse that could happen is that i fell in and got wet- i have always been a great swimmer so falling in a river is not the end of the world. To my dismay a glanced downwards and along the bank a little- and there i saw my first glance of one of many of the rivers inhabitants - a rather large Croc at least 2 metres just basking on the bank-all of a sudden i was very quickly using every muscle i could to try to maintain my grip while someone attempted to resecure the boat- all i can say is before having a rather larger croc in the immediate vicinity, this would have been a guaranteed fall! perhaps its a new form of rehab- it worked for me! I am just glad i had only recently "emptied"the leg so that it did not fall off!

I loved farnorth queensland but that humidity was tough! and i see you guys are having problems with dengue fever too at the moment- i really hope i can make another trip to queensland later this year!

stay cool guys

Sorry this is off topic but its not oten i find other australians on the forums i use

So, it just reached 46 here, thats 115 deg F. Feels a little warm

K