Hope2SleepGuide

Sleep Apnoea Forum Bringing Help + Support to the Patient

Hi all, I'm new to the forums. I'm trying to get treated for years of suffering. Thus far, no doctor has referred me for a sleep study. 

Basically because I don't fit the stereotypical apnea sufferer, I'm slim, I'm not older, I don't fall asleep whilst watching television and I don't snore. 

But, I have a very large tongue, a thick neck for my size and I regularly wake up snorting, I can't fall asleep on back back due to obstruction. 

I also do feel like I desperately want to sleep and want to shut my eyes I just don't spontaneously fall asleep. I go up to bed for a nap instead. 

Last doctor I've been seeing said no to referral, I don't fit. I am going to a new doctor on Monday to try again, this time armed with the results of a sleepview sleep study, same one that's on this site.

I am hoping that is enough for the doctor to feel a sleep study is warranted. The result was a AHI of 24. 

Only every time I go to a new doctor they want to start with the same things I've already had done a billion times, iron test & nose spray. 

Does anyone have any links to information that could backup my case? I've seen that in the American criteria, it says sleepiness OR insomnia. And I have heard a statistic that 40% of Apnea sufferers are not overweight. But I can't find UK guidelines, not a reliable source of statistics that won't get me the look of  "Don't believe everything you read of the internet".

Thanks for any advice.

Views: 221

Reply to This

Replies to This Discussion

Hi Zachery and welcome (I did send you an email a few minutes ago). I'm sorry to hear you're struggling to get a diagnosis and you shouldn't have to prove that many of us are not overweight yet still have sleep apnoea (I'm not and mine's severe). In fact if you look at our charity website at the patient stories you'll see that none of the people on there are the 'typical' sleep apnoea sufferer!! http://www.hope2sleep.co.uk/patient-stories.html

Take the results from the SleepView with you to the GP and insist you get referred to your local sleep clinic, and perhaps refuse to leave the office until he/she agrees!!  Good luck on Monday and let us know how it goes.

Thank you Kath. Now I'm more confident that I sleep study is warranted, I'm going to push a lot harder. I'll give a update after Monday.

Hi Zackary, you can say to the doctor that you feel sleepy when driving during the day. This will guaranty you the sleep study. I highly doubt that you don't feel some desire for taking a nap while driving if you really have sleep apnoea.

Hi Milen, I never learnt to drive. Every time I went out to practice I felt like I wasn't alert enough to be safe. Particularly after two mistakes that could have caused a crash if I was unlucky.

I saw on a thread, I think on here, the recommendation to score in terms of how much you want to sleep rather then your likelihood of actually doing it.

Zackary, my sleep apnoea is caused by side effect of sinus surgery - my soft tissue in the throat got more swollen after the surgery. I lived for a year without realizing this because I didn't experience any sleep desire during the day. Even after it was confirmed after the mentioned 1 year period during an after-surgery 3D X-ray scan I still didn't took care because I didn't feel any sleep problems. Only after another half a year I started experiencing all sleep apnoea side effects. Unfortunately during this time I was relocating to different countries so I decided to postpone the exam. This mistake cause me the following - gaining 25 kilos on my already overweight body, increase in my blood pressure and heart rate, pre-diabetes diagnose and practically sleep-living through the day + 12-15 hours of sleeping during the weekends.

So I suggest you to take the sleep study no matter what. 

I appreciate the word of warning - I will definitely make sure I get a sleep study soon. Really, I should have pushed harder for a sleep study a long time ago. It's not so easy to do when you don't feel up to battling the doctor or even going to an appointment. If it turns out the screener is correct, then I could have avoided many years of suffering. Fortunately, I don't think I have any health complications at this point - but your reply warns me that I shouldn't delay.

I hope that you are OK but still better to check it in advance as sleep apnoea is very nasty, the symptoms could be hard to discover and even after discovering them it could be hard to relate. To tell you the truth I think that NHS must include this as regular 1 year exam, if not the full one at least they should give you a finger oxygen meter or something like that for a night.

It seems to me it would be much cheaper for heath centres to have a home screener - in the long run...

I agree Zackary, and it would be good for GP's to have them then they would know who needs referring to a sleep clinic.

Update. The doctor I saw was very good and referred me immediately, no questions asked. So if anyone else is in the same boat, get a sleep screener.

In fact any one reading this who has any suspicion of sleep apnea or suffers from fatigue even when you don't snore, are not over weight and no one has told them you that you stop breathing, get a sleep screener done. It's well worth the £50 to rent from hope2sleep. 

My doctor referred me two weeks ago, she said I would receive a letter giving me the option of which to be referred two.

I know waiting times are likely long, just seems like when we are talking about just that initial choice letter, I would have thought I would have gotten that.

Is it normal, should I be chasing it up?

I am wondering partly because I know recently my dad's referral letter wasn't sent until he rung up to ask, the hospital hadn't received the referral. :-/

But if I haven't been referred to a specific sleep centre, then I don't know who I'd ring to see if they had got it.

Reply to Discussion

RSS

Sleep Apnoea Forum

New to the Sleep Apnoea Forum? 

1. Stop by our Sleep Apnoea Welcome Center to introduce yourself to the SleepGuide community.
2. Start a New Topic of Conversation.
3. Post your photos - of yourself, your old CPAP machine, your new CPAP machine, your pet, something about you!

Interested in advertising, have a problem or need to contact us? Click the Report an Issue page.

 

Latest Activity

Nick Daniel replied to John's discussion Are every small CPAP machines any good?
"Yes, it does the job. I use a Powapacs Atom for portable power "
Wednesday
John replied to John's discussion Are every small CPAP machines any good?
"Hi Nick thanks. Does it do the job and could you camp with it?"
Wednesday
Nick Daniel posted a discussion

CPAP Total Face Mask

I was curious whether anyone has used the CPAP Total Face Masks and could pass on their observations? I've been using an Airfit F20 for years which is fine apart from the permanent red mark on the bridge of my nose, and have recently tried the…See More
Dec 17
Nick Daniel replied to John's discussion Are every small CPAP machines any good?
"I've been using the Resmed Airmini for about 5 years when travelling - overall lightweight and small and can be controlled by an App, but it does produce a loud whistling/wind sound for me which hasn't been reduced by an inline filter or…"
Dec 17
Greg Lloyd is now a member of Hope2SleepGuide
Dec 6
Jonathan replied to David Hudson's discussion Pressure waking me up. Belching and wind
"Hi It sounds like you need to have more conversations with your sleep clinic.  There's little point in having a high pressure if it means you cannot tolerate the machine.  There's an interesting video here…"
Dec 1
David Hudson posted a discussion

Pressure waking me up. Belching and wind

HiI'm using the prisma smart max machine. Initially I was just on a nasal mask, this changed as I was sleeping with my mouth open. I then went to face and nose mask and complained of bad wind and belching. Sometimes the pressure in the night was…See More
Nov 28
Jonathan replied to Jonathan's discussion ResMed AirSense 10 getting noisy
"Just to tidy this up, I finally had an in-person review by my sleep clinic yesterday, who agreed the ResMed AirSense 10 was "wheezy" and replaced the machine."
Nov 9
Collette rose replied to Collette rose's discussion 1st time and I’ve failed the mask leak test
"thank you jonathan,i did get the it pack so tried the small and still struggled but i was sat up in bed so will try lying down great suggestion "
Nov 3
Jonathan replied to Collette rose's discussion 1st time and I’ve failed the mask leak test
"Hi My first thought is "don't panic"!  We're all a bit different, and there are many things that can be tweaked.  I took to CPAP therapy like a duck to water, but I've had friends who say they can't cope, but…"
Nov 2
Collette rose posted a discussion

1st time and I’ve failed the mask leak test

Hi everyone, today I received my rental kit - prisma smart max, plus a Philips dreamwear mask which I’ve been wearing unconnected to try and get used to it. I just did a mask fit test using a medium mask and got a constant red/orange leak warning…See More
Nov 2
Collette rose is now a member of Hope2SleepGuide
Oct 31
John posted a discussion
Oct 30
Profile IconBill Wright, Nicole Watson, TJ Bennett and 2 more joined Hope2SleepGuide
Oct 29
John replied to John's discussion evil mask noise
"Ha well it lasted a couple of days but started howling again. But it's a step in the right direction, just needs a bit more work."
Oct 24
Jonathan replied to John's discussion Has anyone been told root cause of their OSA?
"Nope, I just accept that some people's throats tend to close when they sleep, due to a loss of muscle tone during deeper sleep.  Back when I was diagnosed, the sleep lab just filmed you whilst you slept, stuck an O2 meter on your finger,…"
Oct 24
Jonathan replied to John's discussion evil mask noise
"Good to know you found a solution!"
Oct 24
John replied to John's discussion Has anyone been told root cause of their OSA?
"Did anyone tell you exactly what the anatomical issue is, Jonathan?"
Oct 21
John replied to Jonathan's discussion ResMed AirSense 10 getting noisy
"Can't say I know about this."
Oct 20
John replied to John's discussion evil mask noise
"So I tore some fabric from one of the filters and glued it over the holes - and it worked!It was dead quiet, and the air was still flowing freely.It was quiet all night then after a few hours a bit of whistling until I gave it a wipe.Vast…"
Oct 19

© 2024   Created by The SleepGuide Crew.   Powered by

Badges  |  Report an Issue  |  Terms of Service