Hi there,

I have not officially been diagnosed with Occipital Neuralgia, but I am beginning to think that that is what I have been suffering from. I will be going back to a doctor soon (husband is military and we are currently getting ready to move to a new country...so it will be a few months before I settle and can get to specialist). In the meantime, I wanted some advice from others who deal with this. I am curious if this sounds like ON to you (I know you can't diagnose me...just curious if my story is similar to anyone else's) and what you do for the pain.

I am 25 years old right now. The headaches started when I was about 18 or 19 years old. It started on the right side of my head right at the base of my head and neck. I got them almost everyday. It was just a dull ache. Nothing awful, but definitely annoying enough that I would have to take advil (especially when I had class or work or something). As months went by and the pain continued, I started getting nervous that I had a tumor (I am a pretty big hypochondriac). I went to my doctor and he sent me to get a CT scan. Everything came back normal. The headaches continued. Went to a neurologist and got an MRI. Again everything came back normal. The headaches still continued. Went to physical therapy. Still not much improvement (granted, I don't practice the exercises he taught me very often). At this point, to be honest, I gave up hope. I took advil almost every day and learned to deal with the pain. I assumed it was just tension headaches. The pain has now gotten worse. The headaches are still only that one side of my head, but the pain spreads behind my ear and up to my right eye when it is at its worst. It feels like a deep ache and I constantly want to stretch or crack my neck or something (which doesn't work). I have a "knobble" that I use to massage the area. Applying a lot of pressure on it hurts...but in a good way. It sort of relieves the pain for the time being, but unless I take advil it will usually come right back and it will last for a few hours if I don't do anything.

I am a teacher and I obviously have to be at my best everyday. The pain makes it impossible, which is why I usually give in and take meds even though I KNOW I should not be taking it everyday. If I am just at home and have nothing to do, I try to massage the area and relax until it dies down.

Does this sound like it could be Occipital Neuralgia? Does anyone have any other idea of what it COULD be? I haven't had much help from doctors, so I sort of want to be armed with information the next time I go see one. I am sick of being told it's nothing when I am spending every day in pain.

Thank you in advance! Let me know if you have any questions!

It does sound possible that you have ON.

I'm in my 40's and YES! young people really do get these neuralgias! don't let specialists tell you that they are rare!!

After 25+ years of dealing with several combined nerualgias in the cranial nerves (all but one is affected), what has worked best for me, is a combination of Botox injections, ibuprofen, yoga, and reducing stress with cognitive therapy rather than the "state of the art" newest fangled medications or opiates. I have tried it all, medications, physical therapy, nerve blocks, microvascular surgery, and yes...attempted suicide, in the last 25 years.

Don't give up hope! This is one tough bugger to live with. It seems that one can not beat it so you have to find a way to make living better despite it.

I am finding that yoga is better for me than standard physical therapy, because it concentrates on the mind/body connection and incorporates the full of your life rather than being a 30 minute session directed by someone else's idea of what your pain is like and how your body responds to it. I do my active body practice at home right now, in the quiet of the early morning before I get on with my day (4 am, pre-commute). But to get started with some good support, a group practice is a good thing, group practice just doesn't fit in my schedule right now.

Perhaps there is a wellness center on your next duty station that has yoga classes. I know when I was at Ft Eustis many! many! years ago, that there were classes in yoga thru the wellness center. Use your resources and be persistant.

Perseverance and learning to let go and go forward despite the pain seems to be the only given.

Good luck.

I'm an older guy 57 with similar symptoms, ache on the right side of my head. Went thru 10 years of misdiagnosis, pain getting worse the whole time till it got to the point of affecting my emotional health, I kinda lost the ability to control emotions. Lucky, an insurance switch happened and a new doc went right to ON diagnosis. Had a nerve block done and pain was (mostly) relieved. Over the past 4 years I've had two surgeries by Dr. Ducic at Georgetown Med center removing nerves in my skull. It helped a lot...maybe 80%...but still dealing with some daily pain.

Headaches can be caused by many things, but if limited to one side with the dull ache daily ON is a reasonable guess. So go get a nerve block done and also demand proper pain treatment...chronic pain will screw you good up if left untreated.

Hi zoomee and cnn,
Sending a belated Welcome to the NeuroTalk Support Groups.

Yes ON will cause aches/pains and they can be one or two sided. Almost always, ON is caused by some mechanical disturbance to the cervical spine and spinal nerves coming out at C2 and/or C3 level.
ON has markedly different symptoms from migraines, for example as pain arises from the back of the neck and can be felt all the way over she skull bewhind the ears and down the forehead to just above the eyebrows. That's the geography covered by the occipital nerves, one-sided or bilateral, depending on how the nerves get irritated. Usually, the aches/pains are constant and continuous rather than episodic.
Treatments vary according to the severity of the pain and pain managers are accustomed to treating ON.
To absolutely diagnose ON, a local anesthetic can be injected in the neck at the site of the greater occipital nerve(s) which is easily found. If pain relief occurs, it can be quite dramatic. Personally, i've experienced EVERY attempt to relieve my neck/head pain and have gottend only temporary relief. My most recent treatment is a moderate dose of prednisone (a steroid used as an anti-inflammatory agent) which helps somewhat but is dangerous as it can have bad effects other organs. As i also suffer from Rheumatoid arthritis and so many joints in my body are also pain generators, my rheumatologist is starting me on a course of Remicade starting next week.
Good luck in getting diagnosed and working on a treatment.

I have the Exact symptoms you do, including the knobby bit. My chiropractor suggesting it was occipital neuralgia. I went to see a deep tissue massage therapist about some neck pain I have been having and she massaged my mouth and where my skull and neck meet. I felt 75% better after that. I haven't had a headache in 4 days. I just got back from another chiropractic appointment where he adjusted my c2 and both told me the same thing - even though the pain is in the left side, my right side is so tense it is causing my left to compensate. Hopefully a couple more appointments to each and I should be fine. So, whilst I believed I had ON, and had your exact symptoms, it's not seeming to be anything more than a temporary problem with my spine and jaw. Obviously, I don't know how things will end up, but right now, for the first time in months, my days are almost back to normal and are largely pain free.

Welcome zoomee99.

I am so glad to learn that you have reduced pain, i would wish that to everyone! My only problem is: Have you had an examination by a neurologist or neurosurgeon that is equal to being treated by a chiropractor(DC)? While a DC can 'manipulate' your body so you feel better, usually the treatment only lasts for a short while requiring you to return to your DC for further "treatments", they do not find the root cause of your neck/head pain. it is easy to say that 'tense(ness)' can cause the pain but usually pain is the cause of the tenseness! It is the body's attempt to stop the movements that are irritating the joint/nerves. Obviously, I am not a believer in chiropractic as i have worked in the medical industry all my working life and understand the differences between traditional medicine and chiropractic. By the way, two of three of our adult children use chiropractors even with the knowledge our family has a genetic tendency to spinal arthritis!