Don't know what to do anymore

[mrsk06]

Sorry for the bit of a rant but just feel really unsupported by my GP. After 10 years of back and forth to the GP with my unusual tiredness and that i have sudden bursts of sleepiness throughout the day even whilst having a conversation or even when writing! my head drops and i go into sleep but i dont recal this and its putting a big strain on my relationship with my husband as he feels i can control going to sleep and that im being rude! I fall asleep ah ok and on a night too! had lung function test to rule out sleep apeona and they are dismissing narcolepsy but yet i have all the symptoms of it. they are going to chase up the lung funxtion test and then hopefully i can be refered to the neurologist but how long will that take? Does anyone else suffer from these symptoms?

[y_not]

Hi,

Firstly a lung function test will NOT rule OSA in/out - that needs a sleep test which is either done at a hospital overnight or with a machine strapped to your chest overnight at home.

Take the Epworth sleep test (Google an online version) - print it and take it to the GP then demand a referral to the local sleep clinic. The Epworth questions are designed to give a good indication - you have the symptoms!

I used to fight to stay awake long enough to stop the car - I was the driver!!! I get your frustration and inability to find the energy to fight the stupidity of the GP but it's the only way. Once diagnosed and with a CPAP you will find that there is another life out there that you are missing out on/ sleeping through.

Fight them, see another GP, change GP's or, go to A&E and try and get them to refer you if all else fails.

Good luck & best wishes

[mrsk06 in reply to y_not]

Thanks for replying, I filled out the epworth sleep test form and scored 18 so now I'm just waiting to hear back for the results of the test of where I had the machine strapped to my chest to measure my breathing and then goodness knows when I will be refered but I'll just have to kick up a fuss. Fingers crossed it's not long!

[Noonoostar]

Hi I have similar symptoms as well as very long and deep sleep I have at least 11 hours most nights. I also don't wake in the morning despite numerous very loud alarms. My mum has had to move in with me and my daughter and it takes her a couple of hours to rouse me. I've been diagnosed with idiopathic hypersomnia and am prescribed 5 different medications that help with the symptoms but don't get rid of them completely. I don't know if that has been considered as a diagnosis for you, if not maybe research the condition to see if you think you have the symptoms.

[mrsk06 in reply to Noonoostar]

Thanks at least I ain't alone, but you do feel like it though if that makes sense esp when others around don't understand that you can't control it. I'll hopefully find out what's happening sooner rather than later x