New to CPAP and related disorders

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Permalink Reply by Kath Hope on January 13, 2017 at 0:55

Well done Janine for standing your ground with the GP, and good to hear you're with a good sleep clinic willing to treat your UARS as not all clinics do.  Interestingly, there are a lot of people with UARS that require higher pressures.  You're a prime example of how debilitating UARS can be to a person, which is why it's sad not everyone gets treatment.  See the section on the website on UARS http://www.hope2sleep.co.uk/upper-airways-resistance-syndrome.html  You will see a link to Dr Park's book 'Sleep Interrupted' on the website, and if you haven't read it then I would highly recommend it to you as he talks a lot about UARS in it.

When the daytime sleepiness continues, despite good CPAP therapy, the next course of action is to check for B12 and vitamin D deficiency, but you've already done that which is good.  If you've only just recently started the B12 and vitamin D tablets, give it a bit longer as they can take a while before people feel the difference.

Another thing to check is any existing medications you are taking in case they are the cause of the fatigue.

Sometimes people also suffer from other sleep conditions as well as UARS or sleep apnoea.  Narcolepsy is one to check for with your symptoms, but you'd need to be referred to a sleep clinic that can check for these if yours doesn't.

A more obvious thing gets overlooked too.....that people are actually having a good 7-9 hours sleep every night WITH their CPAP machine.

Finally, my last thought would be whether you're retaining carbon dioxide and for this you would need your blood gases checking.

These are all the things I can think of right now, and I hope one of them is the answer you need, because I truly feel your pain.  I know first-hand what it feels like to have sleep deprivation spoil your life bringing up your daughter, as it happened to me through my undiagnosed severe sleep apnoea.  Things were much better with our son, because I got diagnosed when he was very young.

Good luck, and please keep us posted.  Hang in there Janine xx

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Permalink Reply by Jayzee on January 15, 2017 at 19:32

Thanks for your insight and views kath, I will be making sure these other elements are looked into! I'm having my third b12 injection next month and have been taking iron tablets for the last 6 months and the vitamin d I have been taking for 10 weeks...I will keep you posted on any other matters that do arise.

What are your thoughts on the ear piece that you can get for driving? When you nod off it sets an alarm off in your ear...was thinking for when I'm allowed to start driving again

Thanks again xx



Kath Hope said:

Well done Janine for standing your ground with the GP, and good to hear you're with a good sleep clinic willing to treat your UARS as not all clinics do.  Interestingly, there are a lot of people with UARS that require higher pressures.  You're a prime example of how debilitating UARS can be to a person, which is why it's sad not everyone gets treatment.  See the section on the website on UARS http://www.hope2sleep.co.uk/upper-airways-resistance-syndrome.html  You will see a link to Dr Park's book 'Sleep Interrupted' on the website, and if you haven't read it then I would highly recommend it to you as he talks a lot about UARS in it.

When the daytime sleepiness continues, despite good CPAP therapy, the next course of action is to check for B12 and vitamin D deficiency, but you've already done that which is good.  If you've only just recently started the B12 and vitamin D tablets, give it a bit longer as they can take a while before people feel the difference.

Another thing to check is any existing medications you are taking in case they are the cause of the fatigue.

Sometimes people also suffer from other sleep conditions as well as UARS or sleep apnoea.  Narcolepsy is one to check for with your symptoms, but you'd need to be referred to a sleep clinic that can check for these if yours doesn't.

A more obvious thing gets overlooked too.....that people are actually having a good 7-9 hours sleep every night WITH their CPAP machine.

Finally, my last thought would be whether you're retaining carbon dioxide and for this you would need your blood gases checking.

These are all the things I can think of right now, and I hope one of them is the answer you need, because I truly feel your pain.  I know first-hand what it feels like to have sleep deprivation spoil your life bringing up your daughter, as it happened to me through my undiagnosed severe sleep apnoea.  Things were much better with our son, because I got diagnosed when he was very young.

Good luck, and please keep us posted.  Hang in there Janine xx

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Permalink Reply by Sleep2snore on February 24, 2017 at 13:04

Hi Janine,

             Narcolepsy was my first thought, however, there are other things that can cause this and I am not a doctor.

If you can't wake up properly there is something else going on, so back to your doctor and get them on the case.

If you have been or are a heavy smoker your lungs may not be exchanging gasses like they should be.  So as Kate said you should ask to get your gasses in your blood checked.  It may be that you are slightly low in pressure and just not quite getting the good from your machine that you should be, however, the fact you zonk out and they can't waken you or you can't speak properly is not good.  Get yourself along to the doctor and tell them what you told us, get it checked out.

It might not be something big, but the sooner you get on to it the better.

If you still feel tired during the day it may be you are not getting the benefit from the machine you should be.

Also, you need to get the sleeping pattern back to normal and try not to sleep during the day.

Avoid alcohol until you get things back to normal.

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Permalink Reply by Jayzee on February 24, 2017 at 14:09

Thank you both for your information and opinions on what it could be.

I have had another home oximetry test and they have asked me to do another as the data collected have some issues with! I am due to collect this again on Monday, I am also due to return to the sleep clinic to have them look at my CPAP date and reassess my condition.

I am still having episodes of zonking and my partner has said that some nights I can still snore with my mask on! I have a full face mask so to me either the pressure isn't correct or the machine is not what I am needing but something more 'industrial' is needed lol.

I will keep you all posted. It is frustrating and the doctor has said I need to give it time! How much time though? It's ok for them to say give it time but time I don't have as my daughter is heavil dependant now upon her grandad (her father and I are not together) and he isn't well himself!

Thanks again for you support and advice....I WILL BATTLE the doctor and keep going until I get a proper diagnosis!

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Permalink Reply by Kath Hope on February 25, 2017 at 12:13

Janine, if you are still snoring in the mask it could well be that the CPAP pressures need adjusting.  Do you have data on the machine that shows your AHI whilst on therapy?

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Permalink Reply by Sleep2snore on March 17, 2017 at 14:21

If you snore with the mask and machine running the pressure is to low, the mask is leaking to much or air is getting out via the mouth.

Just had a quick read of you first post.  Though you say this happens during the day, I wonder if you have sleep paralysis as well.

Causes. During rapid eye movement (REM) sleep the brain has vivid dreams, while the muscles of the body are essentially turned off. While sleeping, the muscles are unable to move so that the person won't be able to act out dreams with their body. Sleep paralysis happens when a person wakes up before REM is finished.

Sleep paralysis is a phenomenon in which an individual, either during falling asleep or awakening, briefly experiences an inability to move, speak, or react. This is a transitional state between wakefulness and sleep, characterized by an inability to move muscles.

Sleep paralysis is the sensation of not being able to move when dropping off or waking from sleep. Your mind is alert and your eyes can see, but the rest of your body is paralysed. This is terrifying enough, but it gets worse. Because you're not entirely conscious when sleep paralysis occurs, hallucinations are common.

Narcolepsy. Sleep paralysis can sometimes be a symptom of another sleep disorder called narcolepsy, which causes severe daytime sleepiness and an inability to stay alert for more than a few hours. Although there's no cure for narcolepsy, the condition can usually be managed with appropriate medication.

Sleep paralysis is a temporary inability to move or speak that happens when you're waking up or, less commonly, falling asleep. Although you're awake, your body is briefly paralysed, after which you can move and speak as normal. The paralysis can last from a few seconds to several minutes.

Sleep paralysis is a phenomenon in which an individual, either during falling asleep or awakening, briefly experiences an inability to move, speak, or react. This is a transitional state between wakefulness and sleep, characterized by an inability to move muscles.

http://www.thesleepparalysisproject.org/about-sleep-paralysis/

What happens in narcolepsy?

In people with narcolepsy, however, the nocturnal sleep pattern is much more fragmented and typically involves numerous awakenings. When falling asleep at night, or during the day, people with narcolepsy may rapidly enter REM sleep, leading to unusual dream-like phenomena such as hallucinations.

There are several symptoms, but not everyone has all of them

There are four key symptoms of narcolepsy, though people with narcolepsy often exhibit only some:

Excessive daytime sleepiness (EDS)

Falling asleep at inappropriate times throughout the day and/or experiencing chronic pervasive sleepiness and fatigue. Excessive sleepiness will also produce poor concentration and attention with effects on short term memory. At least part of the sleepiness may be secondary to disturbed night-time sleep.

Cataplexy

The most specific symptom in narcolepsy but it does not appear in all patients. Around a third of all patients with narcolepsy do not have cataplexy. Cataplexy attacks involve a temporary involuntary muscle weakness in response to emotions or the anticipation of emotion. Positive emotions such as laughter are the most potent triggers, though other emotions such as anger, fear, embarrassment and surprise may also provoke attacks. The severity of a cataplexy attack can vary from mild facial weakness to buckling of the knees and collapse, but without loss of consciousness. Cataplexy attacks can last for seconds or up to two minutes and can occur repeatedly for up to 20-60 minutes.

Sleep paralysis

An inability to move while being conscious either when falling asleep or when waking from sleep. This usually lasts for a couple of minutes, but can last for up to 30 minutes.

They appear to be interlinked. 

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