neck pain at the base of the skull

Starting about a week ago, I noticed pain in my neck at the base of my skull in the back. I thought it was just from sleeping in a funny position on a plane, but then it hasn't gone away since then. It hurts worse moving my head from side to side and putting my chin to my chest hurts with the pain going down the back of my neck. Has anyone else experienced this? Anything that has helped you?

Thanks!

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Hi Gumbygirl. Your pain sounds like the kind many of us have. Mine started at age 23, but always led to a headache. It could be one of many things but most likely your neck is having trouble bearing the weight of your head. The muscles in your neck strain and spasm as they are being overtaxed. Since your pain just started and isn't leading to a headache, some things that could help include heating pads, muscle relaxers, massage and PT. Please let us know your progress. Gentle hugs to you.

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Thanks Azsungal. I have been having headaches, but I thought they were from a cold/sinus infection that I have. Maybe they are from this. Is your neck pain constant? Mine has been and I'm just wondering if that's "normal"?

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That happens to me a lot. I read on here about wearing a soft cervical collar to sleep in. I finally broke down this weekend and got one. My neck still hurts, but it is noticeably better. I've been sleeping with it on for the past 3 nights and it really has helped.

Also, I take a lot of warm showers with the water hitting my neck. That helps some, too.

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Hi again Gumbygirl,

I'll tell you what I've uncovered about neck pain and headaches with EDS. Some of the info might not be 100% accurate, so please take that into account. Hopefully, some of the other headache sufferers might chime in too.

First, if your neck pain and headaches are caused by the tension of your neck trying to hold up your head, the pain is most likely happening in the occipital nerve. The nerve roots are located in C2 and C3. What happens is the muscles and surrounding tissue get swollen and tight and trap the nerve roots in your neck causing pain and a radiating headache up the occipital nerve. The pain can happen on one side or both sides at the same time.

If this is the case, x-rays and MRI's will not show anything. You might get relief from OTC migraine meds or prescription meds. As far as I know, the only way to test this type of disorder is to get a trial nerve block in the occipital nerve. If this is helpful, then you can consider having a stimulator implant on C2 and C3 or have the occipital nerve severed. I don't have any info on the pros and cons from that, but I have read that the nerve usually grows back after some time.

Second, your pain could be caused by cranial settling or chiari malformation. This means your brainstem is lying in the top of your spinal canal. As you may already know chiari malformations are very dangerous. These can be diagnosed with an MRI (laying down) or an upright MRI. The upright MRI is new technology so not very many labs offer it. But, it's my understanding that they are better for EDSers because it shows the brain in it's more natural state, when we are upright. If you do have chiari, you could have decompression surgery. Most everything I've read on this subject though leads me to believe that not many people get headache relief from the surgery. Decompression is most often recommended for people who will or are suffering from other neurological issues that are life threatening.

Third, you could also have pressure from excess brain fluid. This build up is caused by improper flow of CSF through the spinal canal. To learn more about this, check out Dr. Diana's Driscoll Theory at www.prettyill.com. It's fairly technical so maybe someone else here can translate it to layman's terms? I've read that the test you can have to determine this would be a Cine MRI.

Finally, you could have cervical instability. This is where your neck is literally not able to hold your head up and causes the cervical vertebrae to shift. The tests to determine this are an MRI with flexion/extension and a rotational neck/head 3D CT scan. Again, these tests are highly specialized. If it's determined that you have cervical instability, cervical fusion may be recommended. I believe there are only a few surgeons in the country that will perform this type of surgery on EDSers. I've heard mixed reviews on the level of pain relief that is achieved from having the surgery.

My condition is I've suffered from chronic headaches for 20 years. They always start at the base of my skull and radiate forward. I'd like to share more, but could you please change your post to have the info only shared with members? Right now it's set to be shared with the public. Or, you could send me a friend request and we can talk more there. I hope this post is helpful to you and that you find pain relief soon.

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Hi, my son is 17 and he will have bad neck pain from his neck supporting his head. If he rests for a weekend while lying down it really helps him.

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Mine is from cervical instability. I don't think I have Chairi, but know others here do. I love the Caldera Releaf Neck Rest. I got it from Amazon and for me it is more comfy than the traditional white soft ones. I find I go thru periods where it is aggravated, often from something I did, over doing things or waking up wrong. I use the collar in intervals, so I am not bracing all the time, plus eventually it gets annoying. It usually gets better after a week or two. I also go to the pool, get my water belt on and float up to my chin in the deep water. Feels like it puts some space in there. I will say, since doing PT and getting my pelvis more in alignment, it is so much better! I also take breaks through the day propped on pillows, that helps all my body including my neck from wearing out. Hope this gets better for you!

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I also have this. Nothing helps me buy laying down and taking the gravity off my neck. I can't use a neck collar due to the alignment of my spine/neck. I do use a nice down pillow at night to prop me up and support me where it feels the best. Sorry you're experiencing this.

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I am exactly 2 weeks post cervical fusion today ( C3-4-5-) for cervical instability. I was a 1st time Ehlers danlos patient for my surgeon. A guinea pig again. I had a great experience and am doing well. The Doc is having me stay in a ridgid collar for 6 weeks with no driving or lifting or bending over. The rest of my spine is very unstable along with every other part of my body. I lift weights (low) to hold my body together. HaHa. Prior to the surgery I have had intramuscular dry needling done from my scalp to toes. Usually around 50 needles per session. The needling has provided much pain relief for my entire body but especially for my back. shoulder, neck and scalp areas. All is connected. I am sore for 2 days after but I use heat on the areas. What a relief. I will start the neddling again in2 more weeks. It is rare that I have to use heavy duty pain killers these days due to the needling. . Again, I was my PT's 1st ED patient and she is now quite the expert and will actually listen to my body/pain complaints. We figure it out together. I use to go to PT 2-3 times weekly with little relief and now usually just once a week. Do I still have problems and pain. Absolutely!! but I can Function and have some quality of life now. Yeah! I wish everyone of you could experince the pain relief I get. I do get discouraged some days but I try to just take one day at a time and call Lisa my PT. . Live for Today......It is all we have for today. Blessings to you. I live in Arvada Colorado.

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I forgot to tell that I use SED-8 for a natural muscle relaxant. It relieves the pain in my legs and feet and elsewhere and makes it possible for me to sleep without pain relievers. I take 4 every night. It is used for insomnia and anxiety with the muscle relaxant as a SIDE EFFECT. I get it from Frank Tabino at Nutritional Solutions 1-866-866-3320.

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There are no ingredients listed for Sed-8. I always must use EXTREME caution in taking anything with certain herbs, etc. that may interfere with regular meds. Do you know what's in it?

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MandyBear, I just pulled it up at www.MyNutritionalSolutions.com. It used to be called Relaxaid. I have never read about Sed-8. I learned about it on a Christian radio program. All I know it that it works for me. I have used Vicodin and tramadol with only a couple of times. If you can't retrieve the ingredient list let me know. I always buy in 3's because of the discount and usually there is a sale going on of some kind. I have worked with these people for6-7 years and they are well informed. I just don't know about the possible drug interactions as I have gotten off almost all my drugs. Hope this helps.

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Your occipital bones have cartilage between them, and they can become displaced. This happens to me, and gives me horrible headaches. My chiropractor adjusts them for me, which helps a lot!

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