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The Snoring & Sleep Apnoea Forums

The 5 year saga continues!!!

Talk about all aspects of sleep apnoea. Request help from others with the same problem, tell your story, exchange tips & techniques ..
Max68
Sergeant Snorer
Posts: 33
Joined: Wed Nov 23, 2016 11:10 am

The 5 year saga continues!!!

Post by Max68 » Wed Nov 23, 2016 12:11 pm

A friend pointed me in the direction of this forum so I was hoping that I might find some advice on how to proceed in my annoying situation. Sorry if this is the wrong forum to post.

For the past year or so I have been suffering from chronic insomnia and have been on long term sleeping tablets. Without the tablets I get woken up usually by either an involuntary body movement (mine) or I wake up coughing. It's strange because it only happens just after I have dropped off for the first time and only seconds after falling asleep. After being awoken from either an electric zap (that's how the body jerks feel) or the coughing fit I then take an absolute age to drop off again although eventually I will fall asleep. With the sleeping tablets I will usually just fall asleep although last night when I took one coughing woke me up again almost immediately after I had fallen asleep. I feel very tired all day although not so much since moving to a lower mg sleeping tablet but I never feel sleepy tired just exhausted, almost like I haven't slept properly.

So I am tired during the day, I know I snore, coughing wakes me up and in the past before all this started I had woken up a lot in the night to go to the toilet. I also have type 2 diabetes although it is controlled. By all accounts that's five red flags for Sleep Apnoea. But here is my problem, I have had two sleep studies done on the NHS (I pushed for a second one) and both came back negative. Results showed that whilst I do snore there is no evidence of sleep apnoea and my oxygen saturation was always in the mid 90% area which is normal.

So whilst I obviously didn't want sleep apnoea I was also hopeful that if it had been then treatment could have sorted out my insomnia. The consultant didn't really know why I had the insomnia and just suggested the usual stuff like sleep therapy which I have tried and it hasn't worked. It's the coughing that worries me but at the same time it only happens just as I am falling asleep first time round. I don't get woken up coughing after that first time but I am at a loss at what is going on.

I see my GP again next week and I am going to ask what to do next but he has already said that as far as he knows there aren't really any sleep clinics that will offer anything different than what the NHS have done in the South East where I live. I also can't afford to go private so that limits my options.

So I was wondering/hoping that someone here may have had a similar situation and might be able to advise what I should do next. Thank you.
Last edited by Max68 on Wed May 17, 2017 7:37 pm, edited 2 times in total.

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Sleep2Snore
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Re: New to the site, would really appreciate some advice.

Post by Sleep2Snore » Fri Nov 25, 2016 11:26 am

First thing is you may have more than one thing going on here.
Insomnia is one thing I have no experience of other than reading what others have posted.
Butterfly might be worth sending a PM to as she had both Sleep Apnoea and Insomnia, she went to Harley Street (Private) for treatment, but she might give you a few pointers.
She had to keep to a pattern of behaviour before going to bed and she did struggle but I think she got there in the end. Ask he for advice. though you may have to post a few messages before you are allowed to PM her, this is to try to stop Spammers. You will also have noticed your message took a while to appear, but don't worry, once it is seen you are not a spammer your messages will appear quicker and you will be allowed to PM people.

Now, you said that when you first fall asleep you wake up coughing? Now do you feel any tickling or soreness in your throat?
The reason I ask is that might indicate your throat is offering to close, it may not be that but it could be.
What kind of test did they do for Sleep Apnoea? Was it a full sleep in the hospital connected to wires connected to your head with a band round your chest (Polysomnography )or was it a home study where you either get a machine home or some other device with sometimes a clip for your finger?
Has anyone ever noticed you stop breathing during the night for more than a few seconds? Are you overweight (though you don't need to be)?
Do you drink energy drinks or loads of coffee as this can stimulate you and keep you awake? Do you play a gaming machine as this was causing my son problems as it was stimulating his brain and he couldn't sleep?
Going to the toilet a lot during the night can be a sign of Sleep Apnoea, but there are other causes.
What you can do is to get Snoreclock for your Smartphone or Tablet and record yourself sleeping. Go to the page and have a look, it explains what you can do with it. You can listen to yourself or look at in a graph. You can also take it to your doctor or print it off.

I am not a doctor and I see you have had a test for Sleep Apnoea, but unless it was an Polysomnography it might not pick up a mild Sleep Apnoea.
Ask your doctor about it again and see what they are going to do to help you, if you get no answers ask for another opinion, it should not bother the doctor. Though to be fair he has sent you for two tests already and if they were the proper test, a Polysomnography, then it may be something else.
You will need to ask him to do a full blood test to see what else is going on with you.

It is well worth recording yourself, after you fall asleep you will not know what is going on. Your blood saturation levels look ok if they are in the high 90% range.
I am not sure what is going on with you but if you have had the proper test for Sleep Apnoea and it has came up negative then you have to get the doctor to send you to a sleep specialist or do a hole raft of tests to get to the bottom of it.

Let us know how you get on.
S2S - Sleep2Snore

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Sleep2Snore
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Re: New to the site, would really appreciate some advice.

Post by Sleep2Snore » Fri Nov 25, 2016 11:26 am

Sorry if it is a long reply.
S2S - Sleep2Snore

Max68
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Joined: Wed Nov 23, 2016 11:10 am

Re: New to the site, would really appreciate some advice.

Post by Max68 » Fri Nov 25, 2016 12:52 pm

Sleep to Snore thank you for your reply I'll try and PM Butterfly as you suggested and below I have answered your queries as well as I can.

Q. Now, you said that when you first fall asleep you wake up coughing? Now do you feel any tickling or soreness in your throat?

No tickling or soreness in the throat at all bar three weeks or so a few months back and it was down to a virus. Throat is never dry or anything in the morning so never had a problem in this area.

Q. What kind of test did they do for Sleep Apnoea?

They were both done earlier in the year. It was in a hospital overnight with an oximeter on the finger and a band and sensors around the chest with video and audio equipment recording me through the night. So no electrodes on head. Both tests were the same although for the second test I did it after taking a sleeping tablet so they would have more hours of data to look at rather than me just tossing and turning like I did in the first one. Both sets of results showed :
"there is no evidence whatsoever of obstructive sleep apnoea and his calculated 4% dip frequency was less than one per hour with a mean overnight oxygen saturation of 96%."

Q. Has anyone ever noticed you stop breathing during the night for more than a few seconds? Are you overweight

My partner and I live separately but she has never said I stop breathing. Snoring yes but stopping breathing no. Yes I have a little more padding that I would like.

Q. Do you play a gaming machine as this was causing my son problems as it was stimulating his brain and he couldn't sleep?

No.

Q. Going to the toilet a lot during the night can be a sign of Sleep Apnoea, but there are other causes.

I did have investigations on this years ago and I have an over stimulated bladder so take medication for it. On a sleeping tablet I see through the night easily though.

Q. What you can do is to get Snoreclock for your Smartphone or Tablet and record yourself sleeping.

I actually videoed myself for my consultant and he didn't see anything untoward apart from the fact that I kept waking up.

I have had blood tests galore and they don't show anything wrong. Had an MRI as well a few months ago to check for anything sinister and thankfully that was clear. It's all very strange.

Last night for instance was a night without the sleeping tablet and I lay there for ages until I drifted off but was awoken by my body jerking, so no coughing last night but then didn't drop off until 4am. I guess because I have been on sleeping tablets for so long I could be suffering from rebound insomnia when not using them. Have spotted online that there is a sleep clinic not a million miles away so may ask my GP to refer me there. It does say that you can self refer but I suspect that means privately I don't think you can self refer as an NHS patient.

Thank you again.

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Sleep2Snore
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Re: New to the site, would really appreciate some advice.

Post by Sleep2Snore » Sat Nov 26, 2016 4:19 pm

It's all a bit odd as you say.
I know of one person that woke up with a jerk and they found he had a very mild Sleep Apnoea and Central Apnoeas.
It took them a long time to find it though and it was with the the wires on the head during a Polysomnography and he had been tested before and found negative for Sleep Apnoea. Having said that it sounds as if you might not have Sleep Apnoea or if you have it is very mild.
Your blood oxygen is okay so I think in your case it is keep investigating until you find something.
Loosing just a tiny bit of weight might bring you out of it if you are just on the slippery slope towards Sleep Apnoea.
However, you do not fit the profile, but then again neither do a few people I know. I have seen more fat on a chip than on them.

Good luck, let us know if you find anything.
S2S - Sleep2Snore

Max68
Sergeant Snorer
Posts: 33
Joined: Wed Nov 23, 2016 11:10 am

Re: New to the site, would really appreciate some advice.

Post by Max68 » Sat Nov 26, 2016 5:03 pm

Thank you for your reply. It is very odd, and has been this way for months now. It's only been this last couple of weeks that I have been particularly tired during the day though which is very strange considering the insomnia has been going on pretty much a year but then again I have had a cold this last couple of weeks so that probably doesn't help on top of clocks going back, darker evenings all that sort of stuff. It's a jet lag type of tired, very debilitating but I couldn't sleep even if I tried.

I do dream quite a lot so obviously get into REM sleep but when I wake up I just don't feel like I have slept although obviously sleeping tablets will make you drowsy next day and when not taking them it's taking me hours to get to sleep so it's not perfect conditions to be refreshed. The really odd thing is that I feel tired all day but in the evening I perk up and I am fine which then doesn't help come bed time because I am alert. It's possible I may have some sort of delayed sleep phase or something. Most people I speak to never feel refreshed after a nights sleep anyway and we are all getting on a bit so maybe hitting my late 40's doesn't help, maybe there is such thing as a male menopause!

I'll see if my GP will send me for a Polysomnography. Even if it again tests negative for apnoea hopefully the electrodes on the head might pick up some sort of brain activity which I guess your standard NHS test doesn't.

Max68
Sergeant Snorer
Posts: 33
Joined: Wed Nov 23, 2016 11:10 am

Re: New to the site, would really appreciate some advice.

Post by Max68 » Sun Nov 27, 2016 1:30 pm

Well I downloaded the Snorelab app as it was free.

Monitored between 0.40 and 09.30 so 8 hours and 53 minutes with a sleeping tablet. Time snoring was recorded at 9%/47m. Snore score of 4 and all snoring was in the mild range. The App has Mild/Loud/Epic. Highest cluster of snoring was between 4am and 5am where it looked pretty much non stop and just after 6 it peaked briefly and was at the higher end of mild but generally bar that and between 4 and 5 it was all at the lower end of mild or none at all. Quite surprised actually because I thought my snoring was quite bad so not sure if I'm fussing over nothing, the App isn't great or I had the phone too far away.

At 7am I awoke and also set my video camera up so got 2 hours of footage between around 7.15 and 9.15. Scoured the footage and I do snore at times but no evidence of stopping breathing, coughing or gasping for breath. I do fidget and turn over etc but guess everyone does that. On fast forward my shoulder rhythmically bounces up and down so breathing seems consistent so not much to see on that coverage.

So why do I struggle to get to sleep, jolt awake on first effort falling asleep but rarely more than once and yet I am still tired during the day?! Maybe another medical condition, delayed sleep syndrome or possibly my own snoring waking me up could be possibilities. Interesting albeit frustrating.

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Sleep2Snore
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Re: New to the site, would really appreciate some advice.

Post by Sleep2Snore » Mon Nov 28, 2016 10:34 am

The short answer to that is I don't know!
My brother often used to jolt awake when he started to sleep, maybe several times, the wife also does that quite a lot which can be annoying as I am usually just dropping off when she does it.
As for not sleeping I think you need to get your doctor to get a referral to someone that can help with that.
I remember Butterfly saying she was told to avoid some things and get into a routine at night.
If Butterfly has not got in touch try a search for her posts as she had a lot of sleeping problems s well as Sleep Apnoea.

Sorry I can't be of more help, but please let us know how you get on.
S2S - Sleep2Snore

Max68
Sergeant Snorer
Posts: 33
Joined: Wed Nov 23, 2016 11:10 am

Re: New to the site, would really appreciate some advice.

Post by Max68 » Mon Nov 28, 2016 11:21 am

Thanks. Tried to PM Butterfly but unable to do so. Might be because I am a new user. Seeing GP later today anyway so will try and get referred again to a different hospital this time.

Swindonian
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Re: New to the site, would really appreciate some advice.

Post by Swindonian » Tue Nov 29, 2016 11:38 am

Hi, your story is so similar to my own that I think it might help if you visit my post dated 23rd October 2013 which you can find on page 8 under the subject "Diaphragm Spasms and Insomnia". You are right there is a temporary restriction on new members being able to send private messages but it is brief so please attempt a p.m. to me if you think I can help in any way. Eric

Max68
Sergeant Snorer
Posts: 33
Joined: Wed Nov 23, 2016 11:10 am

Re: New to the site, would really appreciate some advice.

Post by Max68 » Tue Nov 29, 2016 12:51 pm

Thanks Swindonian that's interesting. I did suffer with heartburn and a couple of times I awoke with stomach acid in my mouth but it was rare. I also sometimes suffer from hiccups if I eat too quickly but I guess that could be true of everyone. The heartburn and acid reflux are fine now though as I take Lansoprazole daily.

It's not always coughing though that awakes me. Last night was a typical night without a sleeping tablet. Lay there for ages and then I assume just after falling asleep I was awoken from a feeling like someone had slapped the bottom of my feet (that's a new one!). Lay there for ages again and then just as I was dropping off my right shoulder went into spasm and I woke up. It's literally like an electric shock. Eventually drifted off.

Saw the GP yesterday and he has referred me to a different sleep clinic. He is sending me off for a full bloods again and also a chest xray. I did ask about an endoscopy but he didn't think that was needed. If the sleep test comes back negative again I may push for an endoscopy.

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Sleep2Snore
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Re: New to the site, would really appreciate some advice.

Post by Sleep2Snore » Thu Dec 01, 2016 11:58 am

Swindonian wrote:Hi, your story is so similar to my own that I think it might help if you visit my post dated 23rd October 2013 which you can find on page 8 under the subject "Diaphragm Spasms and Insomnia". You are right there is a temporary restriction on new members being able to send private messages but it is brief so please attempt a p.m. to me if you think I can help in any way. Eric
The post is HERE just to save you searching for it.

Right click and open in new Tab or Window.
S2S - Sleep2Snore

Max68
Sergeant Snorer
Posts: 33
Joined: Wed Nov 23, 2016 11:10 am

Re: New to the site, would really appreciate some advice.

Post by Max68 » Sat Dec 03, 2016 12:10 pm

Thanks S2S got it.

Well had chest xray and haven't heard anything in the 4 days since so hope that's good news. Just awaiting the bloods on Monday and sleep clinic appointment.

In the meantime I have been doing a fun experiment using the Snorelab app with different remedies and it throws back some interesting scores.

On the Snorelab website it says : "The Snore Score is SnoreLab’s unique measure of snoring intensity used to compare snoring across nights and between people. Essentially, it is a function of the volume and duration of your snoring. The average user scores around 30, whilst a score more than 100 puts you in the worst 15% of snorers".

My scores :
MON 28 NOV
TIME MONITORING 8h 23m
TIME SNORING 9% / 47m
SNORE SCORE 0
REMEDIES TRIED Anti snoring ring
SLEEPING TABLET No

TUE 29 NOV
TIME MONITORING 8h 16m
TIME SNORING 9% / 47m
SNORE SCORE 5
REMEDIES TRIED Anti snoring ring
Snoreze oral strips
SLEEPING TABLET Yes

WED 3O NOV
TIME MONITORING 7h 5m
TIME SNORING 15% / 1h 5m
SNORE SCORE 6
REMEDIES TRIED Anti snoring ring
Snoreze oral strips
SLEEPING TABLET Yes

THU 01 DEC
TIME MONITORING 7h 27m
TIME SNORING 10% / 42m
SNORE SCORE 4
REMEDIES TRIED Anti snoring ring
Nytol throat spray
SLEEPING TABLET Yes

SAT 03 DEC
TIME MONITORING 8h 22m
TIME SNORING 17% / 1h 24m
SNORE SCORE 29
REMEDIES TRIED Anti snoring ring
Nytol throat spray
Snoreze nasal spray
SLEEPING TABLET Yes



Just an interesting set of results,. Firstly on Monday and Tuesday I intriguingly spent the same percentage and time snoring each night but I felt I didn't fall asleep on Monday until around 4.30 am because I wasn't using a sleeping tablet.

Monday to Thursday I was always in the Mild area, which I must confess was surprise to me because I thought I was a bad snorer (the settings show Mild, Loud, Epic) Saturday though I hit the high realms of loud around 6am and peaked at epic just after 7 and just before I woke up at 9. All through the night it had been at the higher end of mild which in itself was higher than other nights and yet I was using three snoring remedies?! Plus a leap in snore scores from 0,5,6,4 up to 29 (Whoah!!!)

It then occurred to me this morning as to possibly why. The snoring ring makes no difference anyway but I wear it because I have just got used to it. But the throat spray and nasal sprays work (although they didn't) by relaxing the throat muscles that make you snore. However is snoring not created by the muscles in the throat relaxing too much, so any snoring remedy that relaxes those muscles will actually compound the issue because you are relaxing even more than those muscles would without any remedy. Surely what any snoring remedy of this kind should be doing is "strengthening" the muscles not relaxing them.

Not much use in real terms as obviously only sleep studies can really check what's going on but an eye opener all the same with regard to some of these remedies on sale!

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Sleep2Snore
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Re: New to the site, would really appreciate some advice.

Post by Sleep2Snore » Sat Dec 03, 2016 8:28 pm

Your snore score on the last night was only more as you slept longer due to the sleeping tablet.
I reckon if you slept the same amount of time without the sleeping tablet you would get much the same score.

Snoring ring. Waste of money I think. Many have tried a lot of these magical cures, to be honest they are a waste of good money.

However there is a device and a few much the same that are know to work for some, though they do have other problems like dribbling out of the mouth.

https://www.youtube.com/watch?v=1G8ZMGJb6tg

These have also been known to help with very mild Sleep Apnoea as it holds the tongue forward.
There are a few that work in a similar way. Just Google them. Or click on top of the video and then the side videos on Youtube.
S2S - Sleep2Snore

Max68
Sergeant Snorer
Posts: 33
Joined: Wed Nov 23, 2016 11:10 am

Re: New to the site, would really appreciate some advice.

Post by Max68 » Sun Dec 04, 2016 11:34 am

Thanks S2S. Yeah I thought that might be the case but Saturday was with a sleeping tablet at 8h 22m with a Snore score of 29 and yet Tuesday was with a tablet and was 8h 16m but with a Snore score of only 5. So pretty much the same amount of time but a big difference in scores. Saturday was the only day the decibel level hit loud and epic as well. Only another sleep study will help though so I'll just wait for that.

In the meantime I am going to install a program called Flux which changes your PC's lighting depending on time of day with I believe the intention of filtering out blue light in the evenings. I work from home on a PC so screens all day probably don't help but at the same time was never an issue for years. Can't do any harm, worth a try and see if a warmer evening screen makes a difference.

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