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Chronic Head & Neck Pain

My mum has been suffering for the last 8 years with chrinic pain in her head and neack. Over the last few years it has got worse to the stage now where she is mostly home bound. The pain comes from the back of her head where it is very tender so much so she can't even lye down and has to try and sleep sitting up. When the pain is bad she gets a migrane headache along with sharp stabbing pains. mostly on her left side of her head and jaw.

She is seeing a neurologist but she has months between consultation which is far too long for her to wait. They are insisting there is no problem with her neck and the pain is coming from her brain. I dissagree asthe pain and tenderness in the back of her head and neck has gotten worse and is affected by her posture. She is sometimes beter moving round than sitting still.

Really need some urgent progress on this as she is very depressed and has no quality of life.
3 Responses
Avatar universal
Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.

Without the ability to examine your mother and obtain a history, I can not tell you what the exact cause of her symptoms is. However I will try to provide you with some useful information.

There is a condition called occipital neuralgia which could present like this. Occipital neuralgia is a distinct type of headache characterized by piercing, throbbing, or electric-shock-like chronic pain in the upper neck, back of the head, and behind the ears, usually on one side of the head.  Typically, the pain of occipital neuralgia begins in the neck and then spreads upwards.  Some individuals will also experience pain in the scalp, forehead, and behind the eyes.  Their scalp may also be tender to the touch, and their eyes especially sensitive to light.  The location of pain is related to the areas supplied by the greater and lesser occipital nerves, which run from the area where the spinal column meets the neck, up to the scalp at the back of the head.  The pain is caused by irritation or injury to the nerves, which can be the result of trauma to the back of the head, pinching of the nerves by overly tight neck muscles or compression of the nerve as it leaves the spine due to osteoarthritis.

Treatment usually includes physiotherapy of the neck, neck massage, local anesthetic or steroid nerve blocks and medications which are used for nerve related pain (e.g Neurontin). Sometimes it is difficult to treat, but when all these things are done together, symptoms can significantly improve.

There is another another entity called Temporal arteritis ( inflammation of the temporal artery), which your mother is less likely to have, because it usually doesn't go this long without being diagnosed. It presents with one sided pain in the temple area ( not neck pain), jaw pain and pain when chewing. It is associated with elevated ESR in the blood ( an inflammatory marker) and needs to be treated with steroids ASAP as it can cause vision loss. Again it is highly unlikely that you mother has this. Occipital neuralgia seems more likely.

I hope this helps.

Good luck.
Avatar universal
thanks so much for all your advice, we'll mention this when she see the Neurologist on Monday
Avatar universal
My Mum went to see the Neurologist with my brother, I think she ended up seeing the registrar rather than the specialist. It was another waste of time with the National Health Service. They refused to give her an MRI as "They don't think this will help". Can they refuse to give an MRI when her symptoms have obviously gotten alot worse. They are insisting on sticking to their story that the pain is coming from her brain, although they have no answer as to why symptoms that on the face of it look like Ocipital Neuralgia is not that? They seem to be acting very stuborn and not offereing reasonable answers as to why they will not do an MRI. I think they don't want to spend the money or do not want to dissagree with the Neurologist that is looking after this case, maybe covering her arse in my opinion. We are going to try and find a private specialist that actually listens to us and the symptoms and gives rational reasons as to how to get this treated. Can anyone recomend a good Neurologist that will look into Ocipital Neuralgia or other causes for my Mum's symptoms?
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