The diagnosis is in
As some of you know, I have been going through the process of getting diagnosed for a sleep disorder over the last 6 months. It took me 2 years to get to the point where the doctors were no longer fobbing me off with "your depressed" (I don't see how smily sunny optimistic me could ever be thought of as depressed, unless you count the fact that I was miserable because I was tired!) Today was the big day I got all of my test results back and an official diagnosis!
Well after waiting an hour over my appointment time at the hospital this morning, I finally saw the consultant who then tried to tell me I had delayed sleep phase syndrome, because the Actiwatch results showed I wasn't sleeping until 2am?!?
I pointed out that I am always in bed by 11, and that i am always asleep within minutes, we were all quite puzzled until hubby pointed out that they weren't my results...ahh the joys of the NHS!
Anyway, when we finally got that sorted, all of my results confirmed that I have Idiopathic Hypersomnia. The doc has said that the best thing is for me to stay on the Modafinil, and self dose with anything from 100-400mg throughout the day, at what ever intervals I find most helpful.
Essentially, I am always tired, and they have got me on a tablet, that allows most people to stay up for 48 hours, and still feel alert. It just about get's me through the day!
He even said that If I wanted to take extra to go out for the evening that was ok, and that if I wanted to take it through pregnancy (not that I am or even planning, but 24 and just married, I guess he figured it would happen eventually) then most doctors were ok with that too, even though it's not licensed for use in pregnancy.
I really thought I'd be relieved, but TBH I feel like crying. It's like someone just came up to me and said "it's a life sentence, you will go through the rest of your life feeling like you've only had 4 hours sleep!"
I suppose it's just that now it's official, all the other possibilities, slim as they were, are gone. I'm trying to look on the bright side, after all if this is my cross to bear, it's quite a small one in the grand scheme of things.
Just had to get that off my chest. Thanks for listening.
xx
Well after waiting an hour over my appointment time at the hospital this morning, I finally saw the consultant who then tried to tell me I had delayed sleep phase syndrome, because the Actiwatch results showed I wasn't sleeping until 2am?!?
I pointed out that I am always in bed by 11, and that i am always asleep within minutes, we were all quite puzzled until hubby pointed out that they weren't my results...ahh the joys of the NHS!
Anyway, when we finally got that sorted, all of my results confirmed that I have Idiopathic Hypersomnia. The doc has said that the best thing is for me to stay on the Modafinil, and self dose with anything from 100-400mg throughout the day, at what ever intervals I find most helpful.
Essentially, I am always tired, and they have got me on a tablet, that allows most people to stay up for 48 hours, and still feel alert. It just about get's me through the day!
He even said that If I wanted to take extra to go out for the evening that was ok, and that if I wanted to take it through pregnancy (not that I am or even planning, but 24 and just married, I guess he figured it would happen eventually) then most doctors were ok with that too, even though it's not licensed for use in pregnancy.
I really thought I'd be relieved, but TBH I feel like crying. It's like someone just came up to me and said "it's a life sentence, you will go through the rest of your life feeling like you've only had 4 hours sleep!"
I suppose it's just that now it's official, all the other possibilities, slim as they were, are gone. I'm trying to look on the bright side, after all if this is my cross to bear, it's quite a small one in the grand scheme of things.
Just had to get that off my chest. Thanks for listening.
xx
posted by Yoshimi at
02:00
8 Comments:
Having had lots of sleep issues... and having managed to live into my 40s... don't lose heart. i bet it won't always be the same. and yes, it is a big deal to feel tired all the time. its really really hard. Have you tried provigil?
((((HUG)))))
I can't believe they tried to give you the wrong results...what a bunch of muppets *slap*
More (((hug)))
Love
Sarah xXx
aren't the NHS wonderful, they've just tried to tell my husband they don't need to operate on his hernia because they don't hurt...Hello? Why was he there in the first place?
stupid people.
A shame to hear that the result hasn't really put your mind at rest, I've just learned to live with my sleep problems, I hate taking pills anyway.
Take care x
I didn't realise you're in Leicester. Oh and did you want me to send the double breasted millitary jacket pattern to you?
Daft buggers - trying to give you the wrong results.
Perhaps they will know more about sleep disorders in the future and will be able to help you further.
Don't need to comment about the NHS.. you've said it all!
Toughie, having it confirmed, but at least now you know and can learn to cope properly. Over half the battle is won, as they say (or something!)
I'm glad you got a proper diagnosis! What a bunch of muppets - the wrong person indeed.zacharius
Usually hypersomnia has an underlying cause, have you explored those? It is NOT necessarily a life sentence!
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