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Posted: 10 January 2013 06:27 PM   [ Ignore ]  
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Hello to all,

This is something that has most likely been covered but it seems that it is a never ending battle for some and for myself.
I have terrible trouble sleeping, both getting to sleep and staying that way. I ache quite painfully in my joints and seem to have restless legs at times. My palpitation’s wake me as well.
If anyone has any advice about pain management and sleeping that would be most welcome.

Blessing and metta to all.
Steph S smile

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Posted: 11 January 2013 09:48 PM   [ Ignore ]   [ # 1 ]  
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Magnesium before bed?  That helped me in the past with palps. (I don’t get them anymore for some reason), it helps with aching muscles too, and trouble sleeping.

Gee, why am I not taking it?  I ran out and didn’t restock…

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Posted: 12 January 2013 09:24 PM   [ Ignore ]   [ # 2 ]  
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It’s funny you should mention Magnesium, because I was assessed by a Chronic Fatigue expert (Dr Sarah Myhill) and the result of the tests showed I needed Magnesium. Dr Diana here also says that our cells are deplete of Magnesium, so it could hold the key.  I’ve been trying to get some prescribed by my GP but so far been unsuccessful. Anyway, once I’ve tried it I’ll report back on any improvements.
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Barbara
(UK)

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Posted: 12 January 2013 09:44 PM   [ Ignore ]   [ # 3 ]  
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StephS - 10 January 2013 06:27 PM

Hello to all,

This is something that has most likely been covered but it seems that it is a never ending battle for some and for myself.
I have terrible trouble sleeping, both getting to sleep and staying that way. I ache quite painfully in my joints and seem to have restless legs at times. My palpitation’s wake me as well.
If anyone has any advice about pain management and sleeping that would be most welcome.

Blessing and metta to all.
Steph S smile

Hi Steph S,
This was my experience some years ago. The solution for me was to sleep sitting up, with my bottom 6” higher than my feet (bed can be tilted by raising the head of the bed on books - or in the UK you can get something called Elephants Feet, from occupational therapy).  I also found that wearing a rigid Philadelphia Collar (which cups the head) eased a lot of the pain and muscle problems, all over my body and the arrhythmias (to a degree) plus other symptoms.

Make sure you get ready for bed well before you get tired, including taking a pain killer, so once the feeling hits you, it’s straight to bed. You have to try and avoid sudden noises (so earplugs are good) as this may trigger adrenalin and we don’t control it very well, same with flashing lights (wear those airline blackout eye masks if you have to).

People usually think too much about things when they get to bed, this makes them hold their breath and this itself can worsen the pain.  The way I get round this is to breath a little bit deeper and concentrate on the ‘breathing out’ bit, sort of making it a little bit noisy (if you can understand what I mean). This usually takes the focus away from everyday life and helps get me to sleep when otherwise I can’t.
Regards
Barbara
(UK)

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Posted: 13 January 2013 12:29 PM   [ Ignore ]   [ # 4 ]  
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Thank you Barbara,
You have just described exactly my troubles i have with sleep and i have already began to sleep more upright with a soft collar and the improvements are so obvious as soon as i wake up. I have an order a rigid collar from the interent so it will be intersting to see how i feel with that. Do you think i should start only wearing it at night, or day and night to see if there is a marked difference.

Thanks

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POTs, EDS III, Chronic migraine, vulvodynia, MCAD

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Posted: 13 January 2013 06:34 PM   [ Ignore ]   [ # 5 ]  
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Great feedback thanks everyone.

I am still a little confused about the collar? What is it? Adrenilin is something I also struggle with. My fiance can tell when I am unwell by looking at my eyes and he says I don’t look like I have colour just the pupil.

I’ll have a go at lifting my bed but have tried once before and stuggled to get comfortable. Try and try again seems to be what we need to do with most things.

smile
Steph

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Posted: 15 January 2013 10:08 PM   [ Ignore ]   [ # 6 ]  
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diamondcut - 13 January 2013 12:29 PM

Thank you Barbara,
You have just described exactly my troubles i have with sleep and i have already began to sleep more upright with a soft collar and the improvements are so obvious as soon as i wake up. I have an order a rigid collar from the interent so it will be intersting to see how i feel with that. Do you think i should start only wearing it at night, or day and night to see if there is a marked difference.

Thanks

I’d certainly wear it at night AND at times where head neck and shoulder pains start, or nausea plagues you. It’s a case of trial and error my friend.
Regards
Barbara
(UK)

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Posted: 23 January 2013 06:37 AM   [ Ignore ]   [ # 7 ]  
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I notice some nights when i wake up, my heart isnt going fast but the back of my head feels numb. Is that normal in people with pots? I was slightly dizzy too but not enough to make me feel ill.
Other nights i wake up with my heart racing. Always by the morning my heart is going fast again. So i sit up in bed till it settles down. Ive tried raising my pillow but that made my head numb up more often. My dad gets the same trouble as me but much more rarely and his heart does not race just goes numb.

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Posted: 11 June 2013 03:53 PM   [ Ignore ]   [ # 8 ]  
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Nompancakes - 23 January 2013 06:37 AM

I notice some nights when i wake up, my heart isnt going fast but the back of my head feels numb. Is that normal in people with pots? I was slightly dizzy too but not enough to make me feel ill.
Other nights i wake up with my heart racing. Always by the morning my heart is going fast again. So i sit up in bed till it settles down. Ive tried raising my pillow but that made my head numb up more often. My dad gets the same trouble as me but much more rarely and his heart does not race just goes numb.

Hi,
Yes I remember waking up every morning with a numb back of head.  Wearing a Philadelphia Collar all night stopped this.  I had a numb back of head for quite some time after the accident they said that was injury to the C2 nerve but the numbness I woke up with was sort of different. I wondered if it came from within, caused by the CSF build-up, or whether it was because the back of my head and neck junction was getting stretched each night and either affecting the nerve or restricting blood flow.  I always seemed to wake up with my chin on my chest, do you wake up with your head in flexion by any chance ?
Barbara
(UK)

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Posted: 21 August 2013 10:41 PM   [ Ignore ]   [ # 9 ]  
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StephS - 10 January 2013 06:27 PM

Hello to all,

This is something that has most likely been covered but it seems that it is a never ending battle for some and for myself.
I have terrible trouble sleeping, both getting to sleep and staying that way. I ache quite painfully in my joints and seem to have restless legs at times. My palpitation’s wake me as well.
If anyone has any advice about pain management and sleeping that would be most welcome.

Blessing and metta to all.
Steph S smile

Hi StephS,
I know this post is old, but I wanted to let you know what worked for me.  I take 100mg of Trazodone before bedtime.  It is an old school antidepressant that makes one drowsy.  I have trouble with pain too, and use all kinds of pillows, supports, etc.  you can also take a muscle relaxant at night only.  I have never found any great pain pill.
Shonda

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