Occipital neuralgia is a commonly missed headache diagnosis. The symptoms for headaches can be quite different. Occipital neuralgia can mimic migraine headaches but do not respond to standard migraine medications. Occipital neuralgia rarely occurs as a headache syndrome by itself. The majority of patients with occipital neuralgia have one or more other types of headache including: migraines, tension headache, rebound headache and cluster headaches. Occipital neuralgia is frequently misdiagnosed as migraine or cluster headaches. Patients with prominent face pain as part of their occipital neuralgia may be incorrectly diagnosed with tic delaroux (trigeminal neuralgia – a type of facial pain.)
Occipital neuralgia is caused by an irritation of the occipital nerve as is comes through the muscles in the back of the neck. The occipital nerve is formed from branches of the second and third cervical nerve roots. This nerve passes posteriorly up the back of the head, piercing through the muscles of the upper neck. The occipital nerve then curves over the back of the head to the frontal area, stopping at approximately the hair line. This nerve provides pain and sensory information over the back 2/3 of the head. When the nerve becomes irritated from various causes such as strained or tense neck muscles, whiplash injury, neck arthritis or even just sleeping wrong – getting a kink in your neck. These can all result in occipital neuralgia (also called occipital headache or occipital neuropathy).
The headache symptoms of occipital neuralgia include upper neck pain, pain at the base of the skull, which may be on one or both sides, and pain traveling up the back up the head as far forward as the forehead. Some patients experience pain behind the eyes or even facial pain. The pain is commonly made worse by laying on your back. The back of the head or scalp can be sore to touch. The head pain can be anywhere from a nagging aching pain to an excruciating migraine headache type of pain, which can be debilitating. The latter type of occipital neuralgia pain is frequently missed and instead treated as a migraine. Most migraine therapies do not work to relieve occipital neuralgia.
Diagnosis of occipital neuralgia is made by careful neurological examination of the patient. Most individuals have normal exams except for exquisite tenderness at the base of the skull, in the area of the occipital nerve. If pressing on this area reproduces the occipital head pain, the diagnosis is made. Treatments can include the use of anti-inflammatory agents such as aspirin, Tylenol, naproxen (Aleve) or ibuprofen (Advil, Motrin.) Ice to the back of the neck and head can provide temporary relief. One of the most effective therapies, which can be curative for occipital neuralgia, is an occipital nerve block. This is a very safe procedure and consists of injecting a mixture of a local anesthetic with a long acting cortisone. This injection is put in the neck muscles just below the skull base, in the area where the occipital nerve pierces through the muscles. The needle is directed away from the spinal cord and is outside the skull so there is no chance of injury to the spinal cord or brain. The anesthetic works immediately and may cause some temporary scalp numbness. The cortisone is long acting – slow release so that it may take a week to be fully effective. Success rates of up to 80% have been reported. In patients with additional types of headaches, it is not uncommon to add an antidepressant to prevent migraines and other similar headaches. The antidepressants are the mainstay therapy in headache treatment and prevention and have nothing to do with their use for treatment of depression. If you think you have occipital neuralgia or have persistent headaches, particularly ones that are always on one side, you should seek out care from a neurologist who is also a headache specialist.
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My pain with Occipital Neuralgia is constant and over several years and with pain medication(lortab was the only one that even dulls the pain and I have to take high amounts consistanly)I can get through the day. There are days when the pain is so intense I can hardly bare it. I have to say it is the worst pain i’ve ever felt in my life . When it is this bad there is not much that helps. I just put ice packs around my head and eye and take extra pain med. The pain medication is not good for me and my body(im 27yr female) but it is that or be in the most horrible pain you can imagine. I have had this for 4 years as result of trama to neck/ head from accident and just found out a few months agao it was O.N. I realized theres not alot of people who treat it and really know how debiltating it can be. My life is totally changed. I hope to find more info about it on the web and plan to try the Nerve blocks to see if it will give some relief. Any time someone hears (even my doctors) how long and how many pain pills I take , they seem to think its excessive . It is so frustrating because I dont do drugs or even drink. I dont take these because I want to or even get that little high people get when they take it. I only get a little less pain. If I had another option I would try it but since they dont know how to treat it they get out their script pad and just give me another “bandage” to my problem , probably hopeing I will find someone else who will figure out how to help me. If they felt the type of pain daily for 4 years they’d probably understand better. I dont wish this on anyone though. Not even my worst enemy. It really sucks!
Thanks for putting this information on the website, I have been recently diagnoised with occipital neuralgia, for 6 months I have experienced headaches and really have gotten worse over the past 3 months. I went to the doctor he diagnoised me with this, I have tried all over the counter meds and none worked, so I am on Escig 500mgs I have gotten the headaches under control with the medication, so only having to taken half pill a day controls by the end of the day I can begin to fill the headache come on I have also started getting massages which does help. I believe that the type of work I do is also a cause of this pain but I have to work so what is one to do. I try to keep a positive additude and not get down but the pain does overcome me sometimes. I was also told at the time of the MRIs I had recieved that I had a small benin tumor on the left cerebellum of the brain the headaches are only on the right side of my head but wonder if this tumor could be some of the cause of the headaches also although I am being told no. My doctor will order another MRI in December to make sure the tumor has not grown.
My husband has had OC for ten years. He’s had nerve blocks,the nerve cleaned and the nerve severed(don’t do this). All have failed. He became a skeleten and a zombie from all the drugs. All he wanted to do was die. We worked with a very good pain specialist and we decided to try a peripheral nerve stimulator. It works like a pacemaker and is implanted under the skin.It sends an electrical pulse through a lead to the end of the nerve,interrupting the pain signal. My husband has had it for two months now and the difference it’s made is promising. His pain is down about 50% and he’s gone from 75 milograms of methadone down to 30 milograms a day. After a decade of watching someone in unbearable pain I can now see my husband enjoying life again even if it’s at a 50% capacity. We spent years trying to “cure” this condition. There is no cure but by doing our own research we finally found something that will give him SOME quality of life. I hope this information helps someone else and gives them the opportunity to find relief.
I have been suffering with occipital neuralgia for four years . I also get severe migraines . Yesterday I had my first nerve block shot . Getting the needle was absolutely nothing compared to the stabbing pain of the ON . It was mentioned that ON and migraines can be confused . I don’t see how . The pain is completely different and affects different areas . A migraine is a deep throbbing pain inside the brain . Yes it can affect the eye too as occipital neuralgia does but there ends the similarities . Occipital neuralgia is a very sharp stinging pain arising from the scalp . It is constant in varying degrees of pain . A migraine will usually trigger the ON to a degree of unbearable pain and vice versa . I am taking amitriptyline once a day and occycocet three times a day and more when needed . I will wait to see if the nerve block works . I have read that cortisone can cause hair loss . These are terrible afflictions and research now shows that the brain gets used to the pain and increases it much the same as a drug addict or any addict increases their vice ( Scientific America Mind magazine ) . This seems to be the case with me . When I have a similtaneous ON & migraine attack nothing eases the pain . Demerol doesn’t work for me . My last simultaneous attack I took relpax and morphine tablets to some relief but had to suffer it out for four days . My memory was affected . This amount of pain is really scary and I sometimes think it could cause a stroke . Has anyone been cured ? Do I have to live with this for the rest of my life ? I don’t like taking medications and as someone else mentioned – we can be treated like drug addicts . Especially because some strong drugs just do not work for me . It astonishes me that there are many types of transplants but curing brain pain hasn’t been figured out yet . Pain is exhausting . Love & light to all those suffering .
I was happy to find this information this morning. I had brain surgery in July of 2008 for Chiari Malformation. I had horrible headaches, neck pain, numbing, dizziness, passing out and other various issues from this problematic rare neurological disorder. Well something went wrong in the surgery, not sure what but now I have occipital nerve pain. I am not sure if it was nicked by my neurosurgeon or what. I have been on neurontin, baclofen and norco for about a year now because of this. I still have headaches, almost daily from chiari but now I am getting these different headaches as well. Yesterday was the worst. I have never in my life had sensitivity to light from headaches. I woke up with a normal headache yesterday and when I went to take my son to kindergarten the sunlight made it sooo much worse. I literally spent the rest of the day laying down with something over my eyes. My head hurt, my eyes were throbbing, my jaw hurt, my ears hurt, everything in my face and head hurt. It was debilitating. I do not have insurance no longer because I have a pre-existing condition and it cost me over 400 a month. I stay home with our 3 young kids and go to school. We just couldn’t afford it anymore.
I am stuck with a primary care doctor who has no idea what to do with me. He doesn’t know chiari, he doesn’t understand any neurological problem I have. I really think my nerve pain is causing headaches. I already deal with daily headaches from my other problem. Does occipital neuralgia cause face pain, jaw pain, eye pain? I feel like I am having to decipher my own headaches. This is just so depressing. I am sick of headaches. I am 29 and have dealt with daily headaches since I was 12, had brain surgery to fix them and I still have them and now occipital neuralgia. Two differnt headahces. I am over it!
I was fine, until I had a car accident and flared up all of the back of my neck. On July 28, 2008 I had a car accident. My headaches started immediately, but increased in severity and regularity gradually after the car accident, and doctors didn’t know how to diagnose (Migraine or Occipital Neuralgia). By January 2009 my headaches had become 24/7 with light and sound sensitivity (I spent 6 full months in excruciating pain). Also affected were my sight, smell and taste. My headaches would start at the back in the middle and move toward my ear, then over top my head to the front just above my eye. After numerous attempts at Neurological medication, chiropractic, acupuncture, physical therapy, nerve blocks, etc. (None of which helped, I even had two rounds in the hospital from nausea that made me dehydrated.). I ended up having nerve decompression surgery in July in Texas from Dr. Carlton Perry. I am from the Pittsburgh area and had met with Dr. Jho, but he stated two reasons why he wouldn’t consider me as a patient for the surgery. One, I didn’t respond well to the nerve blocks and two, mine was a result from a car accident. He doesn’t like being involved if there is possible litigation. I am wonderful now, no headaches at all. Dr. Perry said it has something to do with the fact that I had an abnormal anatomy, trapezius muscle went way up the back of my skull, and caused my Greater Occipital nerves to bend around it and through it. Also, I had my Lesser Occipital Nerve going through a tendon. He removed part of the muscle and tendon, to relieve the pressure.
I have created a group on Facebook called Migraine or Occipital Neuralgia. I am trying to put information all in one place for people suffering like I was. In addition to Drs. Perry and Blake that work out of Houston, Dr. Jho in Pittsburgh PA, I also understand that there is a Dr. Dellon in Baltimore that is doing this procedure. If anyone is aware of any doctors, I would appreciate finding out more information on them.
HI, 9 years ago I had a chiropractic neck adjustment that started my ON. After the doc. adjusted my neck I felt like a cord snapped inside my head and I developed a chronic headache. He told me to ice my head, which I did. no relief came and for 2 years I went through all kinds of test to figure out what was going on. In 2003 I found a neurologist who figured out that I had ON. I tried all kinds of meds that did nothing and then went for the shot. After a day or so I got relief. Until this pass week I have not had a flare up. As of sunday, I have had debilitating headache, nausea feel like I am going to black out. Had a CAT scan which turn out normal, Thank God, but I am convinced that the ON is the cause of this horrible pain that I am in. I see my neurologist this week and will probably be getting another injection. I have 5 days until I see him hope I can make it til then.
I have had these excruciating headaches/neck pain for 2 years now. Dr gave me MRI and told had herniated C5-6 so thought that was what was causing the headaches. Had chiropractic, physical therapy, and now 2 years later still having chronic pain so went to pain clinic. Dr. said I have occiputal neuralgia. He put me on Lyrica. I’m still have pain though it is much less. I will go back and ask about a nerve block next. I have daily pain from the back of my scalp over the top of my ears. Also dizziness. I want my life back.
I feel like ive lost my life and this condition has taken over, people try to understand my pain but unless one has felt this themselves nobody can imagine the pain we go through with this condition. The skin on my head feels like its been burnt all over and I have tingling pins n needles prickling sharp stabbing pain all over my head all the time it never goes away I also get a throbbing pain in my eyes too, I have never in my life felt pain worse then this I wouldnt wish it on anyone it is horrible I spend so much time crying trying to get relief but there is none I can take all the pain meds i want and still barely comfort. Im affected by the cold weather, the wind the heat it all triggers bad attacks of pain for me and had changed my life completely, Has been over a year now since ive slept through a night my pain is that bad not even sleeping meds can keep me sleeping the most sleep at any one time i can get is an hour and half. If anyone knows what meds work good for this condition or just anything at all that could help to comfort this please please let me know.
I’m here in Upstate NY. In October of 99, I began having pain just above my left obital. As I went through evey pill ,treatment and therapy mentioned by you guys as it has developed, I now feel 98% sure it is OC. Over 13 Drs., MRI,CAT,PETS,pills,tic this,trigemimal that.Even,post herpetic neauralgia…Some treatments two and three times. Radio nerve ablaltion , but in my eye socket,never the nerve,acupunture,PT..So desperate at one point paid some Healer to sit 10 feet away and magicly suck $200 bucks out of my butt…Now I feel its OC caused by over exertion at the gym. Neck and trap constently
sore,swollen, but addicted the working out. People touched on that but you deny and continue. I did stop but never for more that 4 days. Now I went to PT /8xs,and have totally stopped the gym for two weeks..much better. I feel foolish to have let the last ten years of my life be controlled by pain.The pain was at times almost overbearing,throbbing heat, eye..Questiondoes the muscle ever become totally healed, anti inflamed etc..Thank you all for helping me feel more sure of my self diagnosis..I’ve felt depressed for the longest..I’ll find you all on face book..
I’ve been having these headaches 24/7 for nine months. Now I have limitations with my activity because the headaches get so severe with increase of activity. I can no longer exercise. I injured my neck @ work from tilting my head side ways to hold the phone trying to multitask. everyone out there this is a no no. Now my life has changed. I try to increase my activity slowly but I always end up with severe headaches that I have to force myself to sleep. Pain medication does not help at all. acupuncture is the only thing that has helped, but only temporary. I want my life back. This non active life forced by pain to lay around doesn’t work for me. I feel weak everyday from just not being able to be active and sometimes not being able to get out of bed due to the headaches. If I lift a gallon of milk it triggers the pain, this is no life. I can’t even go grocery shopping I have to depend on others to go with me because sometimes pushing the cart it increases the pain. Is anyone else experiencing the same symptoms I’m having? I’m waiting to get a nerve block. If acupuncture helps me, the combination of both should help. I’m so desperate I don’t know what else to do.
I too suffer from O.N. Fortunately I have a doctor who gives me blocking shots in the neck and I have to tell you they are an absolute godsend. It might take a couple of times to find the right spot, but it takes them entirely away. I suggest you call around and find someone who gives these blocking shots. There is no need to suffer or fill up on pain meds when there is such an easy solution.
I suffered with pain in my head and base of my skull where my neck starts. I have inflammation at the base. Feels like lumps in this spot. I have inflammation at top of spine and makes it look like I have a growth or huge swollen area in this spot also. It is horrible.. I wear shirts and the back neck area is pushed up because of the huge inflammation. It feels like sponge when you touch this area. You can’t touch my head and sometimes I can’t brush my hair. I was told it was due to my fibromyalgia. I finally was sent to a pain clinic and was told the head pain was occipital neuralgia and I was started on occipital nerve blocks. It took almost 1 year before I really felt true relief. I go every 6-8 weeks for my shots. I was told that since I suffered for so long that my occpital nerves and other nerves were so swollen and inflammed that it would take quite a long time before I would feel relief. Recently I had to switch pain doctors because my doctor was leaving his practice and so were the other doctors. The new office has no clue about occpital neuralgia especially the PA. I have never in all my life been treated so badly. He said Occpital Nerves do not cause pain at the top of the head or behind the eyes. What an idiot. I am a CPC (Certified Professional Coder). I review medical records in every specialty, surgeries, etc. I review medical coding done by billers to make sure they are billing appropriate based on medical records, op reports. I have taken anatomy and physiology etc. I am not an idiot but I am aware I am not a doctor but I do know what I am talking about. All I want is pain relief. One of the messages about from a wife about her husband she said her husband just wanted to die. I personally have been in that spot so many times and just recently too. I have actually said this to others that all I want to do is die. Me saying this isn’t really do depression but more do to I can’t take the pain any longer. I try to remember that when I look at other people that we are all different and that nobody knows what another person is going through in their life whether it be pain, divorce, depression etc until you have walked in that persons shoes. So, unless you suffer from occipital neuralgia you have no clue the pain we are in. We just want the pain to stop or just die. I hope someone reads this and at least know that someone else is out there that knows what you are feeling and is thinking the same thing. You are not alone.
I am 29 years old and I’ve had headaches everyday for about 5 years now. I have been to 7 neurologists and several primary care physicians. I had sinus surgery last year for a deviated septum and that didn’t reduce my pain at all. The pain is getting worse. I now have more pain over my eyes and ears. I feel like I’m going insane. It seems like the doctors just don’t care anymore. They try to treat me for a migraine or tension headache and get upset because the pain meds don’t work. Can someone tell me where to start with this whole neuralgia thing? My MRIs and CTs don’t show them anything. They keep telling me that I’m fine but I live in pain everyday of my life. I’m starting to become very depressed because I just don’t know how to deal with this anymore.
Hi everybody I have great news. Two months ago a chiropractor told me to try the Upper Cervical Treatment with the Blair Technique. This was the best experience for me. I was about to go crazy with the pain. Look into it. When there’s a Vertebral Subluxation of the Upper Cervical you experience Occipital Nerve . For more information look up Gil Chiropractor if you live in Los angeles. In another state look for a chiropractor that specializes in the Blair Technique. It will take time to heal but I have better days now then before.