Not sure what to do from here

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Permalink Reply by Kath Hope on February 6, 2014 at 21:35

Hi Lee and sorry to hear you're still struggling with daytime tiredness  It sounds like your treatment is going very well if you've got your apnoeas down to 2 and under, so the next question would be to ask how much sleep you're getting and how long you've been on CPAP for?  It does normally take a while until people feel the full benefit of CPAP therapy as there's a lot of sleep debt owed your body.

Another thing to consider is to have blood tests done to check for diabetes, hypothyroidism and anaemia.  Bearing in mind how high the link with hypothyroidism and diabetes is, it's beneficial to have this checked every year, which my own GP insists on!

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Permalink Reply by Terry Vella on February 6, 2014 at 21:54

Lee, I agree with Kath, I know you are seeing your GP, but have you been back to your Sleep Specialist to get them to look at your data and possibly investigate any other sleep disorders you may have?

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Permalink Reply by Lee on February 7, 2014 at 7:29

Hi
Thankyou for your replies, I have been on cpap for 8/9 mths and have no problems using it in fact although I hated it at first I now won't be without it. I have had bloods taken in the last 5 mths that's come up with nothing, I am now in danger of losing my job if I can't stay awake x

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Permalink Reply by Kath Hope on February 8, 2014 at 1:02

No wonder you're frustrated Lee, if you've had a clean bill of health in other areas.  Ask your GP if he's willing to do Vitamin D tests, as a lot of people with sleep apnoea are low in this and it can cause tiredness.  Another reason could be what Terry mentioned (any other sleep disorders).  I know you mentioned your apnoeas are low now, but do you know this from every night or was this just what your sleep clinic commented on back when you had your CPAP trial?  Are you able to check data from your machine to see if this low AHI is happening every night?

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Permalink Reply by Lee on February 8, 2014 at 4:28

Hi kath
Yes I've been tested for vitamin b and d, I have baffled the clinic , one consultant says I have sleep apnoea another says no, I have excessive hyper insolumance what ever that is, I have checked my data every day and it's always under 5.
I have been on machine for several months now and using it ok.
When I go into a sleepy stage I cannot control my eyes my colleagues say that my whole face changes and I go,very pale my eyes just want to close my arms go heavy and although I can hear people around me it seems like they are far away. I then get electric shock feelings in my arms and fingers this can last anything from all day to 10 to 15 minutes during the sleepy stage I have no idea what I'm doing. Just lately it has gone from lasting a short while to staying with me all day. Also sometimes maybe once every other month I am so awake I will stay up all night because I can't sleep which is most bizarre. My sleep consultant has just prescribed me dextramphetamines much to my gp,s discust as this is a licenced drug for narcolepsy and ADHD and I haven't been diagnosed as either clearly I don't want to become addicted to these and I'm only taking them for when I am at work I really need to stay awake it's embarrassing trying to serve customers when I have no idea what I'm doing especially as I work in a bank. My doctor is happy to sign me off although I can't see what good it will do as when I go back to work I will,still have the same problem so I am struggling on. I have never experienced anything like this before and it is gradually getting worse as it was only happening at work now and again to happening daily for most of the day and now it's happening at home it really is taking so much energy to even get dressed I will be ok for an hr after waking and then I feel so tired that I just want to sleep for England I do have another question is sleep apnoea covered by disability living allowence as someone told me this is a recognised disability I'm not so sure as so many people seem to suffer with this I've never heard that you can get help for it. To be honest with you exteme tiredness is a killer people thnk you are just tired it is nothing like that at all it takes over your body you cannot control it no matter where you are. I do get very upset because when I am at work people think ahh she is pulling a fast one although they have been great in letting me get off for some fresh air although this helps for the short term after 10 mins I'm back to extreme tiredness, all I do know is that this cannot continue like this my marriage is suffering my child of 5 is suffering and I to am suffering.
As I write this imhave had a full eight hrs sleep my reading was 3.9 and now I'm up at 4am wide awake and I know I will be in for a bad day this forum is my last hope

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Permalink Reply by Kath Hope on February 8, 2014 at 15:19

Oh Lee, I'm so sorry to hear all of this and can understand how desperate you are - even more so with having a young child to care for.  The one thing I'll say is never ever give up 'hope' because there will be an answer to this!

Just one other thought I had is medications which you may be taking for other medical conditions can also cause tiredness, so it's worth checking on these.

Whilst I'm not a medic, it does sound like it's not related to your sleep apnoea and there are over 80 other sleep disorders which could also be playing a part in all this.  A lot of the 'sleep clinics' in the UK are actually 'sleep apnoea' clinics, and I'm not sure what yours is, but it would definitely be worth you getting referred to a sleep centre specialising in other sleep disorders who can perform other types of tests, like  the MSLT (Multiple Sleep Latency Test).  It sounds like your sleep consultant is suspecting narcolepsy and the MSLT is the kind of test needed for this.  We do have members in the Facebook Groups with Sleep Apnoea who also have Narcolepsy and Restless Leg Syndrome - both of which cause daytime tiredness.  There is a good UK website about narcolepsy on this link, and they also list sleep centres capable of diagnosing and treating this http://www.narcolepsy.org.uk/  The National Sleep Foundation also have a lot of good information http://www.sleepfoundation.org/article/sleep-related-problems/narco...

Regarding your question about DLA, as far as I know sleep apnoea isn't normally a condition justifying this allowance, and that's because when people are on successful therapy they can usually continue to lead a normal life (if this is their only condition).  I do know that there was a petition a while ago to try to get narcolepsy included in DLA, but am not sure of the outcome.

I hope this information helps you in seeking an answer to your frustrations, and please keep us informed of your journey and we are here to support you all the way.

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