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@dstone501957 I have always thought the chills either come from the brain or the brainsstem. I have a positive Babinski reflex and my neuro says I have spinal cord damage in my neck. Oddly I have also had chills from a reaction to a medication, so inflammation must play a role.
@jenniferhunter I learned a lot from your post as well as the post by @dstone501957. My symptoms have worsened recently- the last two months, and you both have me thinking.
Also, I wonder if my trigeminal and occipital neuralgia is related to neck issues (you mention ear pain, which may be neuralgia). Tinnitus and hyperacusis have gotten worse and loud noises cause me a lot of facial/neck pain and numbness. All very confusing. It seems the auditory and facial nerves are connecting and causing symptoms but neuro says it is all coming from the neck.
@jenniferhunt you mentioned a bone spur, I can feel mine on the left side of my neck and it affects my neck, shoulder blade and arm (arm is shorter than the other now).
Also I have a note from neuro saying I cannot bend my neck back at all. I cannot look up. I get really bad symptoms. In surgery the surgeons had to adhere to that note. Is this a problem for either of you?
@dstone501957 let us know what the plan is going forward, after exploration of options. I am grateful to learn from others. I don't like wild goose chases seeing many doctors for mysteries like this, I have seen my neuro for 23 years and he thinks I am close to needing surgery. I hope you find good help.
Replies to "@dstone501957 I have always thought the chills either come from the brain or the brainsstem. I..."
@windyshores If you are feeling something hard on the side of your neck, it is probably the boney spinal processes. Those stick out to the side (laterally) and to the back (dorsally). These are where the muscles connect to move your neck. If you have some rotation of vertebrae, you may be able to tell by checking to see if the spinal processes are lined up. The best bet is to see a physical therapist for this because they can tell by feeling with their hands. Bone spurs on the spine are usually inside the spinal canal or the foramen (nerve root exits) and you would not be able to feel that with your hands. Neck muscles can also be hard and spasmed.
Thoracic Outlet Syndrome (which I have) is most often missed by doctors or mis-diagnosed. That was the reason I started doing Myofascial Release with a physical therapist. TOS caused one side of my jaw to get so tight, I was wearing out my dental filings only on that side when I was grinding my teeth at night. I would get one sided headaches on the back of my head because rotation of vertebrae stretches muscles and they complain. I would get pain across my face and into my jaw and think it was my teeth hurting, and some ear pain. Ear pain also comes with sinus allergy congestion and you can have these both contribute. The Pterygoid muscles can get very tight. When you open your jaw and press inside your mouth on the muscle behind your last lower teeth (where dentists inject pain killer), it may feel very tight. you can use your finger to press and try to get it to relax. There may be a tight muscle between the jaw and ear (on the outside) that you can press on to relax it. These are things my PT has done with me.
I had a positive Babinski reflex too.
When you have TOS along with cervical spine issues, it does confuse where the pain is coming from, and it can be coming from multiple sources. Myofascial release with a good PT can help a lot. I did this for several years and when my spine issues became evident, my tissues were looser, so it was an easier surgery.
If looking up causes dizziness, it's possible this may be caused by rotated or tipped vertebrae. This happened to me when C1 & C2 were slightly rotated and I looked up. It caused vertigo. Think of it like this. The vertebral arteries inside the cervical vertebrae are slightly stretched because of the rotation, then when I looked up, it kinked them temporarily, and that started vertigo. That is part of the blood supply to the brain. Working with my PT resolved this and since spine surgery, everything calmed down, so this doesn't happen anymore. Since my surgery, I can look upward, but that's not the best thing to do. I don't get symptoms beyond fatiguing muscles.
In addition to doing MFR work, my PT was also using a Dolphin Neurostimulator to interrupt pain signals and stop muscle spasms prior to my spine surgery. It eased pain for about a week.
Chills can also come from low thyroid function or low blood sugar. Perhaps even hormonal changes in aging women as that seems to affect people differently.
Here is our MFR discussion. It has helped me a lot.
Neuropathy - "Myofascial Release Therapy (MFR) for treating compression and pain"
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
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My PCP several months ago worked with some medical info I provided for trigeminal neuralgia, had me try Carbamazepine, after a few weeks I could not tolerate it, and I was not seeing any benefit. Main issue with it was tardive dyskinesia (involuntary body movements). Neurologist thought it was the greater auricular nerve and prescribed Oxcarbazepine, which I could not tolerate either with similar tardive dyskinesia side effect. Another Neurologist that my PCP referred me to, totally dismissed my opinion that it was a compressed nerve in my cervical and said it was neuropathy. He over medicated me on gabapentin took me from 300mg 3 times a day to 600mg 3 times a day plus put me on 25 mg of nortriptyline, a second follow up visit he still refused to consider a compressed nerve and increased me to 800 mg 3 times a day on the gabapentin and 50 mg of nortriptyline. I could not tolerate the 800mg level of gabapentin. I have since discontinued the nortriptyline and decreased the gabapentin back down to 300 mg 3x a day. There was no noticeable improvement with the increase in dose and the nortriptyline he added. My recent October 10 Cervical MRI has proven my opinion to be correct. I hope to hear from my DRs that will be reviewing the Radiologist MRI report early this week.