Sleep advice

Hi everyone

Just in need of some advice

So I sleep on a wedge to avoid feeling even more spacey and awful in general

The question I have is, if my right side styloid is longer and causing more jugular compression (which it seems to be from ctv imaging) However I have compression bilaterally. would I be better off sleeping on my left side. I do sleep on my back but find it uncomfortable and have always been a side sleeper.

Just trying to figure out how to not cause even more compression by sleeping in a particular position and feeling even worse in the morning

Mornings vary for me when I wake. I am always symptomatic 24/7 but do notice some mornings can be more severe than others.
Trying to figure out a rhyme or reason to this

Hope this makes sense

Thanks

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Before my surgery, I often fell asleep on my right side - I was opposite of you where the compression was worse on my left side. It seemed to help me wake up with more clarity so it may be worth a try. That said, I’d often end up on my left side because of the bilateral compression.

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Hi Natty,

You could try sleeping only partially on your side using a body pillow or bed pillows to help you stay only partially turned. That might allow you to enjoy side-sleeping but w/o the full compression you get when fully on your side. I, too, am a side sleeper & have found w/ age/body wear & tear, that my shoulders don’t tolerate full side sleeping as well anymore so I use pillows to help me not roll totally onto my side at night. I also have to put a small one on or under my regular pillow to make my head follow suit or I wake up w/ a stiff neck in the morning.

Another thing you could try but this might not be good until your ES has been dealt w/ would be to use a V or U shaped pillow to help you not turn your head/neck so fully when you’re sleeping. That would likely take some experimentation with body/head position.

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I did find a V shaped pillow helped, it seemed to take the pressure off the sides of my neck. I couldn’t sleep on my worst side either. Isaiah’s idea about the extra pillows sounds good! Tbh I ended up sleeping in a recliner chair downstairs quite a bit in the run up to surgery, it was more comfy!

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Thanks for the tips Ann

I may try sleeping on my left side only and see how I get on.

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Oh the sleep battle! I was hoping this would be a place of reprieve for you.

From my experience and in speaking with others it ultimately falls to trial and error which is specific to your anatomy. I ended up fashioning a head cradle made out of an old memory foam mattress topper, like a foam donut, that I cut in half and put inside my pillowcase to frame the top and side of my head. This limited the turning of my head and was still comfortable if I leaned into it with being half on my side.
It can be a moving target…

Sleep is so so so very important…i hope this is helpful!

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Great advice thanks @Isaiah_40_31 I will use the pillows to prop me up partially on my side and see how I get on

I have a v shaped pillow from my pregnancies, so I shall save that for hopefully after I get surgery if I do.

Thanks again

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Aww bless you! I’m glad your out of the recliner now and back in bed, where you belong :grin:

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Thanks for the tips lovely. Your creativeness is inspiring.

Definitely a reprieve here. Love this group so much and it’s very helpful and supportive members :smiling_face_with_three_hearts:

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Oh sleep is the hardest with bilateral compression – I’m so sorry you are struggling with this. For my particular body, using a wedge pillow would have made things worse. Before my first surgery I needed to be lying on the more affected side, and then I used pillows and sometimes my hands or arms to put my neck in as neutral a position as possible. Sometimes a second pillow to keep me from rolling. Raising my meds helped too. I hope you find effective treatment quickly.

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I haven’t been able to sleep on my right side for years & never ever thought it had to do with my ES on my right side (since the left styloid had been removed in '08) but reading your question and the responses makes me wonder if that was why I could not sleep on my right side at all. I hope you find a position that works well for you and that you can have some restful sleep as you go forward.

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My own experiences with sleep deprivation insomnia and waking up to early are due to where the styloids are and what aids I use to sleep
Having ridden my high speed motorcycle recently in the prone position ( makes me more aerodynamic, takes pressure off my chest) the old bones have been pushed back up towards the tonsil fossa.I can’t feel the tip pushing in the styloid anymore.
Two days have been spent in agony, the head ache and neck ache was level 10, eyes hurt and compression on the right was so bad I nearly went to A&E
So paracetamol, Valium, anti inflammatory were taken to no avail
Extreme massages were done using the poly duo and single massage balls, the bedstead frame and ball were used also, no results
Tried one pillow, two, three pillows, zero pillow slept on my head, hung upside down like bat , made a head hammock, it all made no difference
What did eventually help was forcing my chin into my chest, trying to touch my ears off each shoulder and then arching my back to see if my feet could touch the back of my head
Head rolling helps but I don’t like all the creaking and cracking, sounds like a bag of stones.
Head exercise and neck massages for nearly two days meant that I could sleep on my back, with one pillow and throw all my other aids on the floor
The neutral position on my back with a flat pillow is the best for me
During the day trying to maintain a good shoulder profile and keeping my head up is also helpful
My work and sports cause my head to move I think beyond the norm
A 160 mph wind blast on my helmet causes compression and I find it my partner sits, she sits in a chair and I sit on the floor she can take the weight of my head as I relax helps also
So does hot water bottle
Sometimes if I wake I spin around and roll the neck on the round wooden bar at the end of the bed for ten minutes
Then back to sleep okay
Definitely, neck exercises.
Shoulder , neck and cranial?- follow the neck into the skull ,is that cranial? - massages is where it’s at for me
Massage the jaw, behind the ears , massage the styloid, exercise the jaws
Take weight off the head
And one pillow.
Experiment and you will find a solution that suits your bodies needs

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Hey optimistic,

You sound quite gymnastic in your pain alleviation efforts. Good for you for leaving no stone unturned & eventually finding positions & manual therapy that’s helping.

Any word as to whether your CT disc has made it into the correct helping hands yet? I hope so by now. You’ve waited soooo long!

No word as yet, unfortunately
We have gone into phase 3 lock down so restricted movement again , which will put it on the back burner even longer
Good days and bad days
But the bad days when they come seem to be worsening.

Do difficult for you, thinking of you…

Yeah I find myself tossing and turning a lot with really vivid dreams too. It’s when I wake it’s like it almost re-sets this weird awful feeling in my head and eyes, my visual snow is always at its worse when I wake and my ears are always super blocked. I feel the need to get up straight away to almost drain something a little from my head.

Can I ask why sleeping on your worse side was your go to? Is that because it was already bad you wanted to take pressure off the better side?

Thanks for reaching out :smiling_face_with_three_hearts:

Yes that would make sense for you. What happens if you sleep on your right side? Thank you.

I can sleep ok it’s the waking up. I notice some mornings are manageable and some are horrendous. So trying to establish if it’s a certain sleep position

Wow thanks for your detailed account and tips.

You really have explored and trialled all positions, treatments etc to see what works for you

I am so sorry to hear you have been in agony. This stuff is just beyond belief.

Who is Your consultant in the UK?

Lol I’m living with eagles same as you and every other poor soul on here
My work and motorcycles definitely cause my problems to worsen due to ‘ beyond normal usage’
So the warranty is void :joy:
Need easier job but the motorcycles I never quit , not yet anyway
Dr Who is the surgeon
That meaning I haven’t a clue :grinning:
I live in Eire and ES specialists are rare , stand more chance finding a leprechaun with ginger hair
But I have met the right man who is trying his best to get me sorted, he has had ES experience before and he is aware of what is involved
A MDT are reviewing my notes and I await their beckoning
If they decline we have a plan B
Plan C , should A and B fail is a rope and a bottle of whiskey
Last night I used chopped logs to relax the neck muscles and stretch them
I’m not saying you should but looking into different types of neck support, massage, neck exercises is the way to go
Wooden blocks sound unorthodox but I had half and hour laying on my back with the rounded part of the log placed under my neck
Allowing my head to roll back I then went side to side
A hot bath followed and a 10 mg amitripylnee spelt wrong- and I woke up thinking it was 2:30 or 3 am but it was 6:30
Neck manipulation will make symptoms change, ease or worsen
That is where the tusks are and the vagus nerve are ,
I think I have found my best relief so far with the chopped timber as described above
And I chopped it myself
Sell you one for €500

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Natty04 I can give you no grand rationale except that I seem to have less discomfort lying on the most affected side. My guess is that I have to keep my head at a very specific angle on this side to minimize vascular compression and so lying on that side lets me have the best control over my head position. We all have weird Eagle bodies!

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