Anyone have pain when lying down?

General
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Hi!

Does anyone get more flared or pain triggered when they lay down, anyway but specifically laying in their slide? I have cci / neck issues too but one of the most infuriating things is not being able to lay down and rest without huge uptick of tongue/ mouth/ teeth burning pain. Sitting on my couch also does this, but laying is the worst. It’s sucks when your disabled and would like to rest your head and you can’t even lay down. When I do lay down I have to chew gum in order for a moment of relief . I’ll like take the gum out of my mouth right before I close my eyes to sleep at night. My neurosurgeon says it’s likely when laying down, the styloid doesn’t move but the jugular vein and nerves may be getting more compressed .

Does anyone else get this? Any insight ?

PS- as an update to folks I’ve been talking to on here- last year I got an opinion for eagles withh IJV compression by one of the top surgeons. I took a year to do additional testing for this and my cci by neurosurgeon . For my situation, I was recently recommended a c0-2 fusion with IJV decompression/c1 resection at the same time. Then he can take both styloids out during separate surgeries down the line. He said he can take much more of the c1 process off on both sides during the fusion when working from the back of the neck than anyone could possibly do from a c1 shave during styloidectomy since my c1 is so close to my vertebral artery. I can choose to do this or start with my styloidectomy left side , then right side and then reassess where I am after that if I want to do cci fusion and IJV decompression . Currently leaning towards getting both styloids removed first and then potentially the other surgery- time will tell. I have a lot of cci symptoms but even with all the invasive testing I’ve had it’s still hard to tel for certain if it’s my eagles/IJV compression or cci causing my torturous mouth / tongue pain. The trigeminal nucleus is complex!

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@GiannaM - Have you tried lying down with head/shoulders elevated? If so, & it’s not helping, try more (or less) elevation. Sometimes the amount of elevation has to be experimented with to get the best result.

Lying down with an ice pack on your neck could also be helpful. If ice makes symptoms worse you can try heat. Some members have also found OTC lidocaine patches help reduce nerve pain. I’m sorry you’re struggling when trying to sleep. I hope you can find something to help ease your symptoms.

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Sleeping propped up really helped with the head pressure at night, but I couldn’t lie on my left side at all, even when propped up before my surgery. It just seemed to increase pressure that side of my head & set off the nerve pain too. I tried a V-shaped / orthopaedic/ nursing pillow as well as a wedge pillow & that did seem to help a bit. I presumed that the styloid compressed the IJV more?
As for your surgeries, it sounds like you have a difficult decision on your hands! We’ve had some members who’ve had the neck fusion surgery before styloidectomy and it has shifted the structures in the neck & made IJV compression worse, but then there’s a possibility it could relieve pressure otherwise- @Mcwelly wasn’t able to get a styloidectomy but has had a fusion, & I believe although it’s been a difficult recovery some symptoms have improved, here’s a recent post:
Anyone had C1 shaving? - General - Living with Eagle
Having the styloids out would be a simpler surgery to recover from, but I guess if C1 plays quite a part in the compression you might not see much improvement, & there could be the complication of scar tissue later down the line to have the C1 shaved, I don’t think I could face a neck fusion surgery though , would have to be very desperate… Thinking of you & hope you find a way to improve your sleep :hugs: :hugs:

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