will the doc know if I changed pressure?

[PhiloHypnos]

Hi,

I'm using a continuous CPAP and I'm pretty certain that my pressure is not high enough. Its currently set at 12.4

I'm being treated for the OSA in the UK on the National Health Service which provides the treatment and machines for free (the machine belongs to the hospital).

Still waking up multiple times every night, usually after vivid dreams, sometimes with episodes of sleep paralysis, which is NOT a fun experience. My throat feels a bit sore after my nocturnal awakenings, which is a sign of continued OSA. I use a chinstrap so its not due to mouth breathing. Having difficulty waking up in the morning. Drowsy all day with brain fog if I sleep less than 8 hours. Groggy, with brain fog, headache and afternoon drowsiness if I give in to the urge to sleep as much as I feel physically compelled to, beyond 8 hours. it seems the only way I can feel ok during the day is if I manage to wake up after exactly 7:30 hours of sleep. But I find it extremely difficult to wake up after that amount of time. The alarm goes off and I can hardly keep my eyes open. I know this shouldn't be the case. The Doc told me that If the pressure was set at the right level I would wake up naturally, have no problem getting up, and feel refreshed. Either that or I have central apnea or mild narcolepsy on top of my OSA. My GP has ruled out any other possible causes for the drowsiness with blood tests for liver & thyroid function and blood glucose, all of which are normal.

My pressure was originally set at 12 after the sleep study. after complaining about continued drowsiness, the lung function medical technician at the hospital bumped up the pressure. But because she only increases it by 0.1 each time. I've now had it increased 4 times already. Each time I feel a bit better, which indicates that the adjustments are heading in the right direction, but still feel short of optimal each time.

I'm fed up of having to go back to the hospital every 2 weeks to increase the pressure. I really feel the pressure needs to be increased to at least 13 or 13.5. But at this rate I'm going to have to visit the hospital at least 6 to 10 more times! I'm scheduled to see a specialist to ask for more tests to see if I also have central sleep apnea / narcolepsy, but it will take another month before I can find out (long NHS waiting times). I have a PhD thesis to write and I am finding it impossible to concentrate because of the drowsiness and brain fog. The damned thing is already 2 years overdue mainly because of this problem! I cannot bare having to wait another few months before the pressure is finally optimal.

I actually know how to increase the pressure on my machine (Resmed Escape S8), although I am not supposed to. I found the manual on the web.

What I'd like to do is bump up the pressure to 13 in the hopes I can become productive again. Then I'll bring it back to 12.4 before I see the technician at the hospital to get the pressure "officially" increased. I'm hesitant to do that however because I'm afraid the technician might be able to see that I changed the pressure. Does anyone know if the machine records any changes to the settings? I don't want to get in trouble with the technician and hospital. The machine isn't my property after all. And I know how UK medical professionals can get very touchy when their patients get a bit too proactive.

All I want is to be awake, have a functioning brain, finish this damned thesis and get a life again!

Any suggestions would be hugely appreciated.

arkein

[Wulfman]

Since your machine (Resmed Escape S8) is not data-capable, they wouldn't be able to track any changes you've made. If you HAVE to take your machine in, you might want to set it back to the prescribed pressure.

HOWEVER.....I don't recall seeing whether you mentioned which mask you're using......so, if you're using a nasal mask, you need to make sure you're not leaking your therapy air out your mouth at night. ("dry mouth" would be an indication)
Sealing your lips with tape or Polident adhesive denture strips (if they're available in your area) would help.....or, getting a full face mask......and ruling out leakage before increasing your pressure (although going from 12.4 to 13 wouldn't be a huge increase).


Den

[rested gal]

I agree with Den.

The Escape records only hours of use (compliance) so there's no way I know of for anyone to see that other pressures have been set, if you put it back to the last setting they had it on before they go into the menu again themselves.

My throat feels a bit sore after my nocturnal awakenings, which is a sign of continued OSA. I use a chinstrap so its not due to mouth breathing.

A sore throat is much more likely to be a sign of mouth-breathing or mouth air leaks (cpap air detouring into the back of the mouth and gushing out the mouth.

Using a chinstrap is no guarantee at all that a person can't mouth breathe and/or mouth leak during sleep. Try this little experiment right now while you're wide awake. Close your jaw tightly enough that you are clenching your teeth. Let your lips relax open while teeth are still clenched. Try to exhale...with teeth clenched and lips completely relaxed. Bet'cha can.

LINKS to: Mouth leaks - Air Leaks - Tape - DIY Guard
viewtopic.php?t=8011

If you had a ResMed Elite instead of the Escape, you'd be able to see leak data in the little window on the machine the next morning. You'd know for sure if leaks were under control or not. If it showed a high leak rate, you wouldn't know which was the culprit...mask or mouth, but you'd know there was a problem and could start dealing with it. The Escape, unfortunately, doesn't record that kind of info.

Going up a tenth of a cm at a time, as they've been doing, is a waste of time, imho. Whenever I make a change to my own pressure settings, I do it in full cm's. But...that's me. And I'm no doctor.

Good luck, arkein. This has to be extremely frustrating for you. You're definitely trying.

[birdshell]

<snip> If you HAVE to take your machine in, you might want to set it back to the prescribed pressure. <snip>

This did happen to me, and unfortunately the DME provider's RT did not tell me that he had re-set the pressure. I slept at my initially prescribed pressure for about 2 weeks before really suspecting that something was truly wrong.

Please note that I had had another PSG study and so the original prescribed pressure had been increased by prescription, and there was a tag to that effect on the machine. I find that unethical, and immoral on a basic human level.

SHEESH, and "they" tell us that we are not to know how to operate our own machines. In this case, I'd never wanted to fix my pressure before. Thankfully, I knew that the information was on the forum.

So, if you do take your machine in, please check the pressure setting for accuracy afterward.

Karen,
Who could have spit mouth tape at that RT

[arkein]

Many thanks Den, Rested Gal, & birdshell for your input and kind words,

much appreciated! I'm happy I found this forum.

I use a nasal mask + heated humidifier + a good snug chin strap. My sore throat used to be worse before I got the humidifier and then chinstrap. But re your information it seems mouth leakages might still be a problem. I'm pretty confident I can rule out mouth breathing but exhaling might still be an issue. The nasal mask does sometimes leak (occasionally from the sides or the upper lip when my mustache gets too thick! lol), but not very often, and I tend to wake up because of the tickle and then readjust it.

I'll take your advice and try taping those lips together to rule out mouth leakage before I bump up the pressure.

I'll definitely be sure to check pressure settings and bring back the pressure to the original setting when I bring the machine back in.

In the end. The main thing is that I get relief asap. So if they can't tell I might as well increase the pressure myself. Since the Technician has already had to increase pressure twice this month I'll be able to get a letter from the doctor anyway, explaining the continued OSA problems to my University, to clear my name and prove I'm not taking so long because I'm lazy or anything.

Thanks again!!!

[Snoredog]

I would request a Sandman Auto, if you have centrals it will avoid those, if you have obstructive events it will respond to those and still avoid the centrals.

If you have centrals you don't want to blindly increase pressure. They should be able to tell you if you had centrals on your PSG, but the UK is different than the US.

IF you want to change the pressure on that machine, just hold down the right and center buttons at the same time for 3 or more seconds then release, it should put you in the setup menu where pressure can be adjusted. Press the Start button to exit Setup. You use the up/down buttons to change values, left and right buttons to navigate to next field.

and no, they won't know you changed the pressure. Unfortunately with that machine you have no idea if you are going the right direction or not.

[arkein]

Thanks snoredog,

Here's how it works here in the UK:

The initial sleep study, as I had it, was only for OSA and prescribed by a respiratory medicine specialist. That test, I've been told, does not check for central sleep apnea. They diagnosed OSA and the hospital gave me the resmed S8, which is the only machine on offer for OSA. Its all free on the UK National Health Service (well, actually paid for by our taxes), which is wonderful, but the NHS is on a budget so they provide you with the strict minimum they can get away with, no fancy machines. It took me a lot of haggling just to get a humidifier.

After I reported occasional sleep paralysis and continued drowsiness, the respiratory technician recommended I ask the respiratory specialist to refer me to a sleep specialist to check for central sleep apnea / narcolepsy. So I'll have to go to another hospital with a dedicated sleep clinic for that, and given NHS waiting times it may take up to 3 or 4 months before I get the sleep test.

I'll experiment with tape first to see if it helps. if I feel better then that should indicate mouth leakages and I'll try and haggle again to get a full face mask. I've just read that mouth taping isn't very safe, so better get a full mask if I can. I have chronic acid reflux, so sealing my mouth might not be a good idea...

I've also just read on the "our wisdom" pages that too high a pressure might actually cause central apnea... is that really so?

[Snoredog]

Thanks snoredog,

Here's how it works here in the UK:

The initial sleep study, as I had it, was only for OSA and prescribed by a respiratory medicine specialist. That test, I've been told, does not check for central sleep apnea. They diagnosed OSA and the hospital gave me the resmed S8, which is the only machine on offer for OSA. Its all free on the UK National Health Service (well, actually paid for by our taxes), which is wonderful, but the NHS is on a budget so they provide you with the strict minimum they can get away with, no fancy machines. It took me a lot of haggling just to get a humidifier.

After I reported occasional sleep paralysis and continued drowsiness, the respiratory technician recommended I ask the respiratory specialist to refer me to a sleep specialist to check for central sleep apnea / narcolepsy. So I'll have to go to another hospital with a dedicated sleep clinic for that, and given NHS waiting times it may take up to 3 or 4 months before I get the sleep test.

I'll experiment with tape first to see if it helps. if I feel better then that should indicate mouth leakages and I'll try and haggle again to get a full face mask. I've just read that mouth taping isn't very safe, so better get a full mask if I can. I have chronic acid reflux, so sealing my mouth might not be a good idea...

I've also just read on the "our wisdom" pages that too high a pressure might actually cause central apnea... is that really so?

If you have or suspect centrals and traits of narcolepsy then increasing your pressure won't help that. If they only treated you for obstructive sleep apnea, they should have been able to tell you from the study (did you have a PSG?) if centrals were seen or not.

Increasing your pressure on the current machine will only make centrals worse if they exist. Severe fatigue mimics all the symptoms associated with narcolepsy. Your best bet is to lower pressure back to where it resolved the obstruction portion and work on sleep hygene, tracking the hours you sleep being careful of any meds you are taking (including supplements). It can take some time to recover from fatigue, I don't think you want a narcolepsy diagnosis unless it is last resort because that can impact your ability to drive, to make a living, to obtain insurance etc. Not many notice overnight success with cpap, if you are like most you had it for 7 years before you sought treatment, you now have to reverse the effects of 7 years of poor sleep.

If you suspect centrals, the Sandman is still the preferred machine it is about the only machine out there that will accurately identify those and it responds appropriately when it does detect them.

[rested gal]

I have chronic acid reflux

Repeated episodes of acid reflux during sleep can wreck sleep architecture if it causes frequent arousals. "Arousals" don't mean wake-ups. "Arousals" jog you up from one sleep stage into a lighter stage, or out of REM into another stage -- without actually waking you up.
http://www3.interscience.wiley.com/jour ... 1&SRETRY=0
Symptomatic gastro-oesophageal reflux, arousals and sleep quality in patients undergoing polysomnography for possible obstructive sleep apnoea
Excerpt:
"Conclusions: Gastro-oesophageal reflux is common in patients with sleep disorders, is associated with increased arousal, decreased durations spent in the deeper stages of sleep and poorer sleep-related quality of life."

Acid Reflux can also cause the soft tissues inside the throat to become irritated and swollen. Swollen tissue is harder, more rigid. CPAP is designed to push aside soft tissue to open the airway. CPAP air can't do much pushing against a brick wall.

There are many reasons to treat acid reflux very aggressively. Could make sleep and cpap treatment go better.

viewtopic.php?p=229334

I've also just read on the "our wisdom" pages that too high a pressure might actually cause central apnea... is that really so?

"Pressure induced centrals" are pretty unlikely for most people, imho.

I think this kind of talk... "Raising your pressure higher than you need can cause centrals!!" greatly exaggerates the probability of that happening for "most" people. And even if a few scattered centrals happened occasionally, they are no big deal, imho.

Links to Central Apnea discussions
viewtopic.php?p=22702

[arkein]

Thanks again for the input,

@ Snoredog:

My sleep test didn't include a PSG (I'm assuming thats polysomnograph) hence the need to be refered to a sleep specialist rather than a respiratory specialist to ensure that I don't have Central Apnea. I doubt I have narcolepsy. No day time collapsing or cataplexy, just occasional sleep paralysis, and it seems to me to be more like excessive fatigue and the effects of low oxygen due to hypoapnea. If I do have narcolepsy or Central sleep apnea though, I'd rather know it, so that I could get prescriptions of provigil or the like / or a BIPAP or APAP machine, which would be covered by the NHS. In the UK where I live and in France where I come from, we have fewer worries about medical insurance troubles since both national social security systems cover us automatically regardless of priors. The only way I could get an APAP or BIPAP from the NHS would be with a Central Apnea diagnosis. I can't afford buying a machine for myself yet.

I've probably had OSA since my late teens, since I've been snoring and feeling drowsy since that age. been on CPAP for 1 year and 1 month. After a wonderful initial surge of energy, I still felt my drowsiness problem wasn't fully resolved, and it gradually came back and worsened, though never to the degree I was suffering pre-treatment. Thinking the CPAP was doing its job, I stupidly figured it must just be the way I'm hardwired, and didn't see the respiratory technician for 10 months as I was busy writing my thesis. Its only last month that I saw her again and she told me the drowsiness and headaches were probably due to the pressure not being set high enough. There was also a small tear in my tube causing a leak. She replaced the machine, tube and mask, increased the pressure, gave me a chinstrap, and I started feeling better. But I'm still not fully functional yet as you can see from my first message. because the last pressure increase made me feel better, I'm pretty sure that increasing the pressure further and resolving any leakages is going in the right direction.

I definitely need to be more disciplined in terms of sleep hygene. But it is difficult to keep regular hours when sleep troubles and inevitable naps keep wreaking havoc with my sleep patterns. My sleep times keep shifting forward gradually... just like before my treatment.

I can't wait for the PSG test results, which won't happen till a few months. So I'll just experiment with half centimeter increases for the time being to see if it helps. can't hurt!

@ rested gal:

I'm aware that GERD can cause sleep troubles as well. The reflux has gotten better as I've lost a lot of weight, though I've stopped taking my proton pump inhibitors for the past five months, because I was taking provigil (without prescription...bought on the net) to deal with the sleepiness, and in my experience the two drugs don't mix well. Perhaps I should try stopping the provigil for a few days and get back on the lanzoprazole. Provigil does help, but not 100%, and its bloody expensive when its not covered by NHS.

I also doubt that any possible Central Apnea I might have would be pressure induced... but I can only be sure after I get the PSG.

[arkein]

To be more precis about the sleep test I had:

It only included the pulse oxymetry and nasal air flow measurements. No oral airflow measurements. I usually breathe through the mouth and didn't sleep very well during the test, so I'm not surprised if the prescribed pressure was a bit off the mark. It did show a moderately severe AHI.

Can't remember if there was an ECG, but pretty sure there wasn't.

No Electrooculogram and no electromyogram.

[UKMischief]

Hi Arkein

As another UK Phd Student who uses an Apap machine (S7 Resmed Auto Spirit) I thought I should reply to your thread.

I got my Apap on the NHS after going back to the Sleep Clinic several times ..... They initially gave me one for six weeks to check out what pressure I actually needed. I had been constantly taking the mask off owing to the incorrect pressure that had been set on my then remstar cpap machine. it was set at about half the level I needed. After returning the Apap machine used for diagnostic purposes I resumed onto cpap. It wasn't successful and I convinced them to resume the treatment using an Apap machine. Now a couple of years later I'm sleeping with it often 8+ hours a night and are really enjoying the benefits of it! It has really changed my life positively!

The key thing that I've learnt from my experience is that you need to keep pushing them to give you the right treatment. Ask them to use a Apap machine to help you and them identify the correct pressure level you need. And then if it works ask to keep the machine. If the pressure needed is 12 or above I think they will give you one with no problem. The key is to remember it is what works for you. Treatment for everyone is a very individual experience and what works for one person might not be comfortable for someone else.

Also from reading your thread, if you breathe through your mouth I would request a full face mask. I use a mirage quattro and have been very impressed with how quiet it is and how comfortable it is.

Good luck!

[ozij]

I want to join the chorus of "you might still be mouthleaking".

And I don't think you should try to mislead your doctors about the pressure you're really using. Your doctors need all the information available to you in order to make good treatment decisions. You're will be doing yourself a disservice if you hide the fact that you have been sleeping better at higher pressure. Tell them you were feeling bad enough and therefore impatient enough to risk it. Trust it a two way street - try to build a trustworthy relationship with your doctors, whoever they are. If they turn out to be unreliable, change them. Going to your doctor with misleading information is like being without one. Whe waste your time on that?

O.

[arkein]

Wow, Thanks UKmischief & Ozij,

@UKMischief:

Brilliant to find someone who's been in the exact same situation as me, including PhD! I'll follow your advice and push for the APAP and Mask. They do eventually give in to repeated requests, but it does require quite a bit a negotiating, which is not always easy when one just doesn't have the energy because of the condition, nor the required knowledge. Thanks for the extremely useful input!

@Ozij:

I'll do the "sealed lips" experiment tonight to check whether thats one source of the problem. Couldn't do it last night as it was too late in the evening to get anything from the pharmacy. As for misleading the doctors: of course I'd rather not, but I really don't want to risk upsetting the technician as I'm afraid it might cause them to stall my progress, given that the equipment is not mine and it might be considered as "tampering" with hospital property. My motivation in temporarily increasing the pressure is twofold: 1) to confirm in my mind that I really do need a pressure increase, and estimate how much, so that I can then confidently push the technician to increase to the appropriate level as quickly as possible and avoid having to endure 0.2 increment changes for months on end. 2) to give me enough energy to do my thesis writing and actually go and see the technician! I've been putting off work and seeing them precisely because I had no energy or brain power to do so. There is a younger, more "laidback" technician who sometimes sees me, and if the feeling's right I might admit my experimenting to her as she might be more open to it.

Further update on my experimentation:

I increased the pressure to 13 last night and took my GERD medicine. I had no troube adapting to the change in pressure. I still woke up a few times during the night and remember having a couple of bouts of sleep paralysis... such a horrid experience...ugh... However, I feel much better today. It's not 100% ideal yet, but it is much better. I let myself sleep as much as I felt I needed, without an alarm. Got up after about 8 hours, which is 1 to 2 hours fewer than I had so far slept without the alarm. I don't have as much of the brain fog and headachey feeling as I usually get. So tonight I'll seal my mouth and keep the same pressure. then, if that doesn't do it, I'll increase to 13.5 with sealed mouth.

It seems I'm going in the right direction...

I want to thank all of you for your wonderful input. I'm so grateful! I'm going to register as a forum user.

Best to all,
arkein

[PhiloHypnos]

Voila! I'm now an offical member