Acromegaly Support Group

My symptoms were: waking up with an extremely dry mouth and tonge and sore throat, acid reflux while sleeping, waking up and needing to use the bathroom during the night frequently, waking up with a headache, never feeling rested, nearly falling asleep on my way TO work in the morning, being extremely sleepy almost all the time, unable to think clearly due to tiredness, drinking lots of caffeine and eating sweets to try and get more energy to stay awake during the day, poor memory.

Bearing in mind that my sleep apnoea was diagnosed as "very mild", it was basically sleep disturbance, horrible dry throat, constant bad headaches, periodically waking up in a panic feeling you can't breathe, choking, snoring a lot (to the extent that my partner had to sleep at least part of every night in another room), feeling tired all day every day.

I can't begin to think what bad sleep apnoea is like if mine was diagnosed as very mild, on the borders of not being treated at all.

Post surgery, it has all gone away. I can't believe how lovely sleep is! I used to dread dropping off to sleep in case I died in the night!

Thanks for your replies,dont know what to think, I wake every couple of hrs, sometimes in pain, sometimes not, cant get back to sleep for hrs,I drad the nights. Thanks again

My symptoms were waking up in a panic because I could not breathe, I would have coughing attacts,really dry mouth because you sleep with your mouth open and snore.Wake up and stay awake for hours, gone since my surgury..

Thanks for your replies, lack of sleep is terrible isnt it, already had 2 surgeries, but its pain that wakes her most of thetime, remnant tumour pressing on 5th cranial nerve, nightmare. Anyone heard of myelin sheath tablets for nerve pain? Thanks again

Have a look at the following recent New York Times article:

http://www.nytimes.com/2009/05/10/...

Note that the sleeplessness there is attributed to acromegaly but not to sleep apnoea. It seems that the growth hormone wreaks havoc with your REM sleep.

John

I was reading the article it shows about the sneaky one as I call it gets us in different ways.I iceskate really well and got in a challenge to rollerskate backwards but went down on my arm really bad on the X-ray I bent it and they said that was very unusual took a year to fix.... they said it would have been better if I broke it cant win.Also my nails so strong people always asking were you get your nails done.I tell them they are real they go Oh so lucky.There is one thing this conditon is good at and thats blinding people to what it does.

Hi JonD1,

Have just read the story,My daughter was the same after surgery, she began to sleep again, no snoring,her IGF-1 was over a thousand then and GH was 140, the GH is down to 12 but IGF-1 is still elevated 580 ish maybe when we get Pegvisamont it it will lower and she will feel better, im going to look into the Myelin sheath tablets, Thanks again everybody for replying