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Sleep disturbance in pHPT

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Sleep disturbance in pHPT

Post by Jasmine2 on Mon Aug 25, 2014 9:03 am

I found this quite interesting as sleep disturbance is one of the most irritating, annoying and debilitating symptoms for me, which is what I was thinking at 2am this morning - and 3am, 4am .......so on and so forth ad nauseum!

Jasmine x

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3945278/
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Re: Sleep disturbance in pHPT

Post by Lucycatnaps on Mon Aug 25, 2014 10:30 am

Hi Jasmine,
Thank you for the link and have just read through it all, wishing and hoping that one day I will be able to have a proper nights sleep if I ever manage to get surgery.  I slept in this morning ha ha as I was awake several times like you tossing and turning.  Sometimes I feel more worn out than when I went to bed lol.
We were in Aldi recently and Mr L got me an activity monitor.  It was a waste of money but one thing that it is useful for is that it monitors your sleep pattern, it is like a wristband that you wear.  I think he gets fed up of me saying I don't sleep well etc.  Since using it I find I am awake at least 6 or 7 times every night. I fall asleep almost immediately and get 2 or 3 hours sleep and then the tossing starts, trip to bathroom etc.  One thing it shows is that sometimes I am not awake as long as I think I am, but it is not deep sleep which we all need.  I cannot remember the last good nights sleep I had, probably over ten years ago.  
Take care and hugs Sue x
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Re: Sleep disturbance in pHPT

Post by Tigerlily on Mon Aug 25, 2014 11:37 am

This is really interesting, Jasmine and Sue.

At the side of the paper Jasmine quotes is one describing something called "Pasieka's symptom scores in PTH disease" which quotes a set of symptoms that can affect the quality of life of PTH sufferers:

http://academicdepartments.musc.edu/surgery/education/journal_club/08-09/november1.pdf

I haven't read it through yet, but it might be useful for anyone struggling to get a diagnosis from an endo who says (as mine did) that (a) HPT has no symptoms, (b) any symptoms are from high calcium, (c) you don't have high calcium, ergo (or whatever the Latin phrase is to use at this point) (d) therefore you can't have any symptoms.

I'll be re-educating her on that point very soon!

Love from Tigerlily xxxx

PS. I'm the same with the non-sleeping - I can do 11-2, and then I start all the tossing and turning.
Eventually I go downstairs and chat to Audrey or Nancy!

Love from Tigerlily xxxx

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Re: Sleep disturbance in pHPT

Post by Jasmine2 on Mon Aug 25, 2014 1:19 pm

Did you notice who co-penned the paper in your link Tigerlily? A certain Mr Gregory Sadler, whose protégé was a certain MTK, who gave you the brush off as being a silly old menopausal whinge .......

J x
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Re: Sleep disturbance in pHPT

Post by Amanda Lynne on Mon Aug 25, 2014 1:41 pm

Very interesting Jasmine, I'm with the 11-2 crowd then it's on and off until I get up. Tigerlily that MTK deserves all he gets from you !!!!
Love Amanda xxxx
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Re: Sleep disturbance in pHPT

Post by Tigerlily on Mon Aug 25, 2014 6:44 pm

Well spotted, Jasmine, so it is!

I think Greg Sadler works out of the John Radcliffe Hospital, Oxford - for the info of anyone out that way.

 It was a choice for me at the time between him and MdaK, but when I enquired of Greg Sadler's (very helpful) Secretary, she said that if I saw him on the NHS at the JR there was no guarantee that he would do the operation himself, and it would probably be "one of his team".

Thanks, Amanda - still enjoying ruminating on how I go about re-educating MdaK ..... !!

Love from Tigerlily xxxx

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Re: Sleep disturbance in pHPT

Post by MaryM on Tue Aug 26, 2014 1:50 pm

Hi Jasmine

As you know I just had surgery a few weeks ago and the most benifical thing for me now is I get a good nights sleep.

Pre surgery I would go to bed exusted and fall asleep no problem then after a couple of hours I would need to get up to go to the toilet, then I would more of less watch the clock until it was time to get up for work.

Having a good nights sleep makes such a big difference and sometimes I don't even need to get up to go to the toilet which again is a bonus.

Mary x

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Re: Sleep disturbance in pHPT

Post by Jasmine2 on Tue Aug 26, 2014 2:14 pm

Oh Mary, I dream of having a good night's sleep again ..... well, I would do if I could only get into a deep 'dream' sleep for a couple of hours before I wake up to clock watching duty .... So pleased that things are returning to normal and you're getting your life back again.

Jasmine x
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Re: Sleep disturbance in pHPT

Post by Tigerlily on Tue Aug 26, 2014 2:22 pm

That's such a good result, Mary - like Jasmine, I'd give a lot for a night of refreshing sleep.

Keep posting on your improvements - it keeps us all motivated.

Love from Tigerlily xxxx

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