I have Chiar with sleep apnea. I do use a cpap machine which helps tremendously! I suffered from severe anxiety for too many year from all of this, and I now have very tense muscles.
But, I also have trouble laying flat, because I wake up with terrible neck and head pain! If I lay on my back too long, I’ll awaken with so much tension in my neck and shoulders. This almost always turns into pain in the right shoulder that refers up the right side of my head and around to my eyes. It is always right sided!
Does anyone have any info on this? I’ve been telling my doctors about this for almost ten years and I don’t get any answers! It’s very frustrating!
I think I know what the cause is (Chiari) but I’d like to hear from others, if this is the case.
Thanks, H<3
Hi,
I had this as well(waking up with headaches,sore neck/shoulders), flat on my back or on either side. I have an adjustable motorized bed frame (was like $300 from walmart and played with mattresses to find a comfortable combo) that I tried different sleep positions and found that with sleeping on my back, legs up/bent and head/upper torso up (higher than my legs), headaches/neck pain are far less common or as intense. I had to avoid sleeping on my side all-together at 1st, but can now do so sometimes for a while, but still mostly sleep on back and upright. Everyones different (I’ve read from some who benefit from sleeping on just 1-side) but this has helped me significantly.
Hi, Thanks for your reply! It’s nice to hear that the adjustable bed has helped you! That’s likely my next step!
My symptoms are so sneaky, this is really the worst of it, so my doctors aren’t convinced that it isn’t just anxiety. They say they don’t know the cause?!
Have you had any doctor explain what the cause is for you? Why it happens? Likely Chiari or neck, but any further info would be appreciated.
I’m 59 and this is relatively new for me (last few years).
Fairly certain my issues are at least in part CM1, if not completely - its hard to diagnose and symptoms can be partially/fully CM or something else. My symptoms started at 52(primary cough headaches w/CM1 via MRI), went mostly away for a short time then came back worse at 53 adding dizziness (2nd brain MRI showed CM1 was worse). Most believe that this is congenital, but an earlier cervical MRI(herniated disc) showed no sign of low lying tonsils for me.CM w/symptoms in general is pretty rare, but even more so after 40. My neurosurgeon stated that I’m a very rare case, don’t know for certain what causes it, and not enough stats for a definitive procedure, although decompression is the most likely 1 if needed - fortunately am able to manage my symptoms and don’t appear to be causing anything permanent for now.
2 theories for cause:
pressure from above (eg: add’l fluid pressure, deformed/small skull, tumor, head trauma, etc)
pulling from below (eg: CSF leak, syrinx, tethered/binding cord(Filum terminale disease).
Filum terminale disease is a bit controversial w/the controversy mostly being diagnosis. Most believe any issues should be visible by MRI, but some claim issues may exist that can only be found during surgery - am currently researching this possibility, but far from any action.
Again, everyones different but some add’l things that seem to help me(in add to sleeping position)…
Avoid: bending over; straining; lifting anything heavy; overhead exercises; ‘hi blood-pressure’ exercise; sitting down(I use a standing desk, try to limit my driving and lay down multiple times during the day)
I have a very strict diet that’s too long (and individual) to list but some general things…
eat foods that keep me regular,
avoid…sugar; simple grains; salt; nuts; and foods w/tyramine and histamines (seem to trigger those with migraines)
don’t overeat (again, a pressure thing)
caffeine via coffee 2x a day - note: I used to avoid caffeine in the afternoons because it affected my sleep but now have no issues and am certain it helps me, but threre are those in the CM forums that say it makes their issues worse.
Thank you so much! That was very thorough! I’ve been meaning to look into diet, and possibly see a naturopath.
The histamines is interesting. I also have chronic pan sinusitis.Again, a naturopath my help me understand it!
My doctors don’t help at all (hate to say it!), They still don’t know, after 11 years of mri’s, what causes my pain laying flat. (My mri has never shown changes). So, I feel pretty alone with this!
Glad to find this platform and thanks again for your help!
