Thursday, 6 May 2010

Day 500 - Occipital Neuralgia

“Occipital neuralgia is a term used to describe a cycle of pain-spasm-pain originating from the suboccipital area (base) of the skull that often radiates to the back, front, and side of the head, as well as behind the eyes.

The occipital nerves are two pairs of nerves that originate in the area of the second and third vertebrae of the neck. While most people's nerve roots originate in similar places on the spine, cadaver studies show a wide variety of differences between individuals as to the course of the nerves once they leave the spinal column. Often the nerves follow a curving course that passes through various muscles in the upper back, neck and head.

These nerves supply areas of the skin along the base of the skull and partially behind the ear. While the occipital nerves do not directly connect with structures within the skull itself, they do interconnect with other nerves outside of the skull and form a continuous neural network that can affect any given area through which any of the main nerves or their branch fibers pass.

Occipital neuralgia occurs more often in women than men. It can have many causes such as trauma (a direct blow or "whiplash"); spinal column compression; nerve lesions; localized infections or inflammation; gout; diabetes; blood vessel inflammation; and local tumors.

Commonly, the nerves are inflamed and sensitive because they are trapped within the muscles through which they pass. Muscle spasm and pain are often associated with nerve entrapment, which causes localized pain, spasm and muscle cramping.

Symptoms include the following:

- Headaches that are localized or following a "ram's horn" pattern on the side of the head, often starting in the upper neck or base of the skull. It can be one-sided or on both sides.
- Scalp that is tender to the touch, often hypersensitive. Even brushing your hair can be a painful experience.
- Pain or pressure behind the eyes. Eyes are very sensitive to light especially when the headache is present.

Many conditions can show symptoms similar to those found with occipital neuralgia. Treatment of occipital neuralgia may involve oral medications that are designed to reduce inflammation and spasms, localized therapeutic injections, physical therapy, massage, and heat.”*
*http://www.healthscout.com/ency/68/536/main.html
I thought I would post something on occipital neuralgia as someone recently mentioned looking into this condition. My type of headache doesn’t seem to correspond to that described above, in particular as I do not suffer from muscle spasms. One reader of this blog recently commented on the hemicrania continua post about having an indescribably severe headache which manifests itself with severe muscle spasms. Occipital neuralgia could be something he could look into if he hasn’t yet. His story nearly brought me to tears.

The number of comments recently posted on my blog under the hemicrania continua post go to show how many people seem to suffer from this condition. Sadly most of the people who I have been in touch with have not as yet had much relief from the medicines they were prescribed. I still remain convinced (and I am sure many of you do) that there must be an intricate reason for the onset and continuation of our headaches. What this is, in my case, as no doubt in many others, still remains a mystery.

There have been a few days in which the headache has flared up, and every time I manage to forget how bad it can get. Being tired doesn’t help. Sleeping too much doesn’t seem to help either. Finding a constant balance is what I need to do. I also got a bit of a cold the other day which revived the headache, making it thump away - although that was a ‘cold headache’ on top of the ‘normal’ headache.

It has now been nearly a year and a half.

Compared to others who have commented on my blog, it’s no time at all. What is my body trying to tell me? What is going on in there? Sometimes I wish I could just crack my head open and see what’s going on.

The kinesiologist was not around when I was back in the UK so I did not manage to see him this time round. I went for some acupuncture - the acupuncturist always manages to pinpoint the pain and stick a needle right in it; as the needle enters that part of my head, my head feels like a balloon deflating. The pain remains but in some ways I feel like I have caught it, pinpointed it, willing to stab it and kill it once and for all. But, alas, it perseveres.

69 comments:

  1. Sorry its still going.

    My occipital stimulator actually helps, and it doesn't involve taking medication, but it took 3 months of constant stimulation to actually work where I could feel a big difference.

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    1. I've never had blogged or answered a blog so if I've done this wrong, please tell me. I pray for all of us who suffer with a debilitating condition, expecially those who suffer with occipital neuralgia. Long story short, I slipped on the ice backwards in Jan, 2009. I wish I had never gotten up, I would have froze to death that night & never experience what I've had to deal with the last 3 3/4 yrs. I've googled occipital neuralgia, such as I did this time, but apparently didn't look far enough, so far, I've learned about a nerve stimulator and the surgery. My neurologist doesn't feel like I'm bad enough for surgery, my thought, how the hell does she know what I deal with every other day. I don't have the pain that is being describted, I have a heavyness feeling in my head, my head feels like a 50lb bowling ball. I tell people that I wish I could open my head up & let the pressure out.

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    2. HOW I HEALED MY OCCIPITAL NEURALGIA.... I am a retired stuntwoman and have had alot of trauma to my neck over the years. I have suffered O.N. for the past 2 years, I tried muscle relaxers, massage, injections in neck, chiropractic, all of which helped somewhat but only temporary. The headaches were debilitating, putting me in bed for usually 24-48 hrs and accompanied by vomiting.

      Long story short, I have VERY hard water at my house and use a water softener that uses sodium. My water is then run through a reverse osmosis system for drinking. I came to find out that the R/O system was NOT taking all of the salt out of my drinking water. My coffee, tea, juice and just plain drinking water all had salt in them. Over the 2 years that I lived in my home I was being salt poisoned and didn't even know it. When I switched the source of my drinking water to distilled water, my occipital neuralgia gradually disappeared. The salt/potassium ratio is what fires the nerves in the body, and mine was definitely out of balance. It has been 5 weeks with NO incidence of O.N.

      I'm sure this isn't the reason all people have ON, but it was a major contributor to mine. I also had high blood pressure which is also slowly coming down. So be sure to limit your salt intake in your diet and see if it makes a difference for you, I also found that aerobic exercise or just plain walking is a huge pain reliever, increasing my circulation, lowering my BP somehow wards off an ON attack.......... I'm so happy to have my life back. I hope you all get yours back too. Blessings...........CC

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    3. I had nerve stimulator for more than one year of trying to get it right. Finally had it removed. Have had this headache since I woke from surgery 3/27/2007 day and night 24/7 and can't find a doc to prescribe meds

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  2. So you've officially been diagnosed with occipital neuralgia? How much of a difference has there been since you started using the stimulator? (comparing on a scale from 1 to 10) Hope you're having a low pain day.

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  3. Nope, I'm an official hemicrania continua person, not occipital neuralgia (which is just as painful in a different way).

    I went from an average pain of probably an 8 down to a 3. For me 10 is pain past my endurance point - I can't walk, talk, and just shake and cry incoherently. I was hitting 9-10 every three to four days before the stimulator, now it's only about once a month. So from what was completely disabling to still somewhat disabling but livable.

    I decreased the severity and the frequency of severe headaches by a significant percentage (see http://noextendedwarranty.blogspot.com/2010/04/tomorrow-was-better-day.html) I have some graphs!

    http://www.youtube.com/watch?v=j_STzpWLSHA
    http://www.youtube.com/watch?v=T2TvRL8BXpk
    are two good links on someone with occipital neuralgia who received a stimulator and how it changed his life.

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  4. I was diagnosed with occipital neuralgia last year. I've been having chronic migraines for seven years & one of my doctors think the occipital neuralgia is triggering the attacks. Unfortunately none the treatments we've tried with this in mind have helped. Very frustrating. Thanks for talking about this condition. Doesn't get much play.

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  5. pain by the sea16 August 2010 02:31

    It seems I have Occipital Neuralgia depending on the environmental location. I have suffered from headaches for 12 years,and they got much worse, and mainly Occipital when I moved from the east coast of Canada to the West Coast. I live right by the Pacific ocean. I moved here 5 years ago. For an experiment, I went back to the east coast for 6 months this year, and the Occipital headaches went away. *note- I lived in a major city on east coast,on west,it's rural, and forest
    right on the ocean.

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  6. I've had a headache off and on since 2005.

    When I go to the chiropractor and he tractions the occiput by lifting it, the headache will go away temporarily. The pain radiates to the left side and ties in with TMJ and there is pain behind my left ear. ROLFing helps, but only 20 sessions is not enough. I'm hoping that I can get permanent relief from specialized kinesiology, which will identify the imbalance that caused it in the first place.

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    1. Well, I have finally found a bit of relief. In NCR (neurocranial restructuring) by manipulating the sphenoid bone. The sphenoid is a butterfly shaped bone (sphenoid means butterfly) at the anterior base of the skull. The sphenoid directly or indirectly articulates with every bone in the skull; if the sphenoid is subluxated, the entire skull and meningeal system may be affected. Asphenoid subluxation can affect total body structure. The sphenoid and occiput join at the sphenobasilar junction.

      Dr. Ted Koren, DC can manipulate it which will also move the occiput. It's calle Koren Specific Technique. Dr. John Lieurance, DC in Sarasota uses a variation of NCR called FCR (Functional Cranial Release)

      Look these up on Google, and also look on ncrdoctors.com and drdeanhowell.com

      Mine was performed by Dr. Hillary Lampers, ND

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  7. I have been living with occipital neuralgia for 15 years..and (i was diagnosed when I was 13) so for me it was a little more frustrating because after I was diagnosed.,nobody rally took it seruously ,the doctor said i just needed to relax and that the pina will go away .. i dont believe in treatments...I am afraid they will only worsen the condition..... my headcahes come and go..but a chronic sensation in the back of my ear and the side of my head is always there...its soo frustrating....I just hope they dont get worse....its nice to at leats see that there are ome people who know what this pain feels like and support each other...because people have no idea what this is...

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  8. I found your site through Winny Ninny Poo Poo. I've had the same headache (with a few short reprieves) since Sept 2005. It is characterized by a sharp, knife-like pain in the right temple that stops behind my right eye. I have some level of pain every day. For several years, that pain made its way up to 8/10 by nightfall.

    Trigger point therapy gave temporary relief (down to 2-3/10) and pointed to another diagnosis "Myofascial Pain Syndrome".

    Last summer when I couldn't get in to see the Trigger Point doc, I saw another neuro who did an Occipital Nerve Block. I've had some success with it (almost three months now, and only three really bad 9/10 days). So, I think I can safely add Occipital Neuralgia to the multitude of diagnoses I've had!

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  9. I have been suffering from occipital neuralgia going on 4 years now and have been on every medication I can think of without success. I just recently underwent a radial frequency abalation and after 6 weeks I have noticed about a 60% improvement. My doctor said I will most likely need another one in 6 months and I won't probably see much more improvement then what I have right now. What is most fustrating for me is finding a doctor that knows how to properly treat this condition. I have wasted thousands of dollars and time trying to get help. I now drive over 100 miles to a university hospital hoping they will be "the one" that knows what to do, but even now I am having my doubts. I asked about having a surgery called microvascular decompression of the occipital nerve and they look at me like its something Im making up and forget about asking about the nerve stimulator. I am now looking out of state for help. There is a doctor in Pittsburg PA called Dr Jho that does decompression surgery, but that is over 600 miles away for me. It should'nt be this hard for those who suffer with this debilitating condition to get better help. Although it's nice to read other blogs and know that someone out there understands your pain it saddens me to know there are sooo many suffering. I pray for you all!!!!!

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    1. I hope you find a good doc close to home but if you do have to come to Pittsburgh I would recommend checking out the neuro dept. at Allegheny General Hospital. It is considered one of the best in the field of neurology.

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    2. Don't know if it is any closer for you but there is a Dr. Perry in houston tx that has good reviews on the same surgery.

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    3. Please do more research on the decompression surgery . My insurance company refused to pay because they deemed it not safe and too new with not enough research. My docs agreed and recommend the nerve stimulator, which for mw did not work. Good luck

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  10. My 9 year old daughter has had a continuous headache for 486 days. She has a rare auto-inflammatory condition, and the pain began with a flare of her disease. We have been down the hemicrania continua route, tried over 19 drugs, even put a temporary drain into her head to release elevated intracranial pressure. The headache worsened. Doctors have a hard time believing her, and always want me to take her back to a psych. I know she's in pain. She's gone from an all star softball player to a grandma in 14 months. Today I discovered "occipital neuralgia" and the symptoms (minus light sensitivity) describe her to a T! Tomorrow I will call our neurosurgeon and have her evaluated for this. This is a living hell, I feel so bad for all of you that are suffering with this condition.

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    1. Can you tell me if you daugher has gotten relief over the years? My 14 year old daughter has ON and just received an ablation to the C2 nerve. She had 100% relief for 3 days and now the pain is back, but about half of what it was. We are still shy of a week of the ablation.

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    2. My daughter is 14 and has had migraine pain for 3 years now. We have narrowed it down to ON and is scheduled for a pain block next week. Please tell me how your daughter is doing with the ablation as my daughter may have to go down that road as well.

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  11. I too have been diagnosed with ON. It is hell and i suffer right along side so many of you. I have recently found a support group for those of us dealing with ON. http://www.mdjunction.com/occipital-neuralgia
    I hope this helps someone. Take care <3

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    1. MD Junction is a great place for a number of different chronic illnesses, including fibromyalgia and MS.

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  12. I have had brief ON headaches since I was a child, but 6 weeks ago an "episode" started and hasn't quit. Neurontin helps at 900 mg a day and I had my first nerve block today. The numbness is starting to give way to burning, stinging pain that is supposed to ease up in 3 days with complete pain relief in one week. I am hoping this is the answer, because I want so badly to stop the Neurontin. I have never had light-sensitivity with this and don't see it listed in many symptom lists by recognized medical sites. Not going to lie, so far this nerve block is far from pleasant but here is to hoping there is light at the end of the tunnel!

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  13. I have had a severe and intermittent pain at the right side of my head in the back for over 10 days now. It is extremely debilitating and just as I think it is over, it comes back again and each time, it gets stronger and stronger. Over the counter meds help, but I want to know if it will ever go away. I am prone to migraines, but have never experienced anything like this..it is quite distressing, and I don't know whether to go to my doctor or just wait and see what happens..I am convinced that it is something pretty nasty.

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  14. re: my posting of 4th jan. 2012 - just discovered that the painkillers I have been taking for back pain, contained Codeine, which is habit forming and can cause excruiating headaches in some people. Stopped the tablets and Presto!! headache gone.

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  15. I found your site very interesting. I was diagnosed with ON three years ago, and given the usual round of painkillers. However, as the headache never seemed to go away I went back to my GP and he informed me that the ON was usually a symptom of something else and sent me for an x-ray. Sure enough the x-ray came back showing cervical spondilosis. I am very lucky In that I hsve a GP who is interested in these conditions and send me for an MRI scan which showed that I also have two ruptured discs at C2 and C3 and a slight stenosis at T1. The osteophites that the Spondilosis causes rub on the displaced discs and also cause contact with the nerves running through my vertebrae. I now attend a pain clinic at my local hospital and take Oxycontin and Amitriptyline which go a long way to allowing me to lead a reasonibly normal life. I have also had interfacet injections, which for me did not last more than four days, and I am due to start a course of low level laser therapy next month in the hope that I can eventually get off the oral medication. I too experience migrain headaches which got worse as my CS and ON developed but have not reduced frequency to around one every 6 months. I think the key is to keep pestering your GP's and find one who has a knowledge of this condition and get as many tests done as possible.
    I hope this has been of some help and wish you all the very best in finding the correct treatment for your condition.

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    1. Where do you live, can't find a doc to prescribe anything here

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  16. I was diagnosed just last October with the ON and that was after a whole 2 years of suffering with non stop headaches, they can last anywhere to 3-24 days at a time with only a day or two of some reprieve. The doctor only has me on Norco 325 and that dont even touch it. Went into ER after suffering for the past 9 days with pain at level 10. They first treated me with magnesium and a couple of drugs but didnt work then my blood pressure dropped to 84/50 so they had to wait to give me duladid. Can the pain from the Occipital Neuralgia cause the blood pressure to drop. Just wondering

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    1. I normally have BP that is always near nominal. Other than the ON issue, I have exceptionally good health and am physically fit (well what's left of me is, I used to weigh 210, now I have difficultly keeping 170 lbs on my frame).

      When I am experiencing crippling pain from ON and end up in an ER (twice this year), my BP has been consistently found to be just like yours was ... very LOW.

      They told me that extreme pain can make a person's BP shift significantly. I should also mention that Norco 325 didn't help me much either. My Doctor is too afraid of the DEA to even consider prescribing Oxycontin, so I live on a roller coaster with 3 Percodan's a day and muscle relaxers for the spasms...trying to find life somewhere in between the pain and the ups and downs of the pills.

      It's 6 am...been up for two hours. The pain forced me to get up early again. Took a pill and here I sit crying and cursing, waiting for it to take effect and turn down the volume on the pain. Here again I sit searching for an answer, a clue to a means to get my life back, a clue that seems to have eluded me again.

      I have had pain and spasms in my neck and shoulders, along with what I thought were migraines, since I broke my neck, shoulder, two ribs and a collar bone in 1985 while serving in the Navy. I left the Navy one year later. They let me out early, if I signed a statement turning down any 'disability' benefits. I was young, proud, and not so wise. I turned down disability and have been somewhat disabled ever since. I refused to give up, and I now own a small specialized software firm, allowing me to work when I am able and earn just enough money to keep looking for a solution and put food on the table.

      ON used to visit me quite rarely, half a dozen times a year or so...today it seems it never leaves me and now I wonder..what next? I am not suicidal, but have logically come to the conclusion that at some point, if the symptoms worsen and prevent me from accomplishing any work at all, it will become illogical for me to continue taking space and using resources.

      I am 55 years old, although this morning I feel well over 80. I love life, I treasure the few hours I have each day where the pain is reduced to a mere "headache and stiff neck", during the period of the medications 'peak' effect, which seems to gradually shorten over time.

      My fellow ON sufferers, keep looking, I know that I will because there is always a solution to every dilemma, even if you have to create it yourself.

      If not today, sometime in the future, someone will figure out a way to put a permanent "off switch" on this little "pain in the neck" nerve and give us our lives back! I would say, "Keep looking up", but moving my neck, zaps my head...so I will just say..."Keep looking" and report back if you find anything that helps, it may help the rest of us!

      For the record: I have tried RF Denervations, bi-monthly injections (nerve blocks), physical therapy, massage therapy, inversion therapy, traction & other decompression therapies, chiropractics, acupuncture, heat and ice. While many of these had positive effects, they were all only temporary. Currently, I have steroid injections in my ON area every 8 weeks. It helps reduce the pain by about 30% for up to six weeks.

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  17. I am and have been suffering (at times an understatement) from occipital neuralgia for 4 years, beginning immediately after undergoing brain surgery for the removal of a very large tumor. I have tried, as many have, various treatments, to no avail. The narcotics relieved the pain but made me a drooling zombie. I switched to cannabis (using the Sativa strain instead of the Indica) with satisfactory to good results, depending on the severity of the pain. The greatest attributes of the cannabis are, NO ADDICTION, maintaining cognizant thought, the stimulation of hunger (something I lost due to the tumor), and mood elevation. I reside in California where use is legal. Am going in in June to have a stimulator implanted. The test implant was quite successful. Oh, the anticipation of freedom (to whatever extent)from pain, and all other aids in the mitigation of the pain. I pray I'm saying goodbye to this hell.
    MH

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  18. I have had migraines my entire life, which were debilitating and horrible, but in my opinion I would much rather have a migraine than this nerve pain. When I started going back to college about 6 years ago, I started having a different kind of headache. Through numerous episodes of this horrible, stabbing electrical pain (from the base of my skull on the right side, radiating up over the top of my skull and behind my eye, and down my neck and shoulder on that side as well) with the help of my doctor, I have landed on this diagnosis. I have noticed that this head and neck pain has been exacerbated over the years, when I need new contacts or glasses, when I use my right eye too much, or when I sleep wrong on the right side. It started up again with a vengeance about a month ago. I have been dealing with it for the past week straight with no relief. When it really hits, all I can do is groan and scream. It is the most painful thing I have ever felt. My blood pressure shoots up 30 points and I get extreme nausea, weakness and loss of appetite. My career has been put in jeopardy because of missing work. I feel for anyone dealing with this. The doc does not seem to give the disorder the credit it deserves, sometimes referring to it as a "tension headache." He has not done any additional diagnostic testing to find the cause. I have been referred to a chiropractor and am cautiously optimistic that this will help. Has anyone had an experience where they discovered the cause of their occipital issues and it made a difference? I am wondering if it would help to treat the problem, if we could determine the cause.

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    1. I must say that I understand your pain. An osteopathic doctor actually discovered that I had ON when I was going on 6 months of a headache could not get out of bed. Iwas given all kinds of medication and had blocks put in. That was in 2009, I am currently going through a flare up and now it starts all over again. I would suggest an osteopathic doctor.

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    2. Does the osteopathy help? I have been diagnosed with mayofacial pain syndrome, trigeminal and occipital neuralgia. I am entering my third month off work because of these things. I can understand people wanting to cut the back of their head off. I have said it many times. I describe the pain as feeling like I've been hit in the head with baseball bat. I'm considering osteopathy but, I'm terrified it will make my pain worse.

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  19. Hello, I too suffer from Occipital Neuralgia as well as i was just diagnosed with TMJ (really bad) case. I have found no relief from the headache. It does not respond to benzos, opiates, muscle relaxants or even injections(I have had steroids, depo medrol and trigger point lidocaine injections.) I was just wondering if you had found any relief yet? Also wondered if you have TMJ as well?

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    1. Hi Dale!,

      I have both conditions like you have. I believe our tmj problem creates muscle spasms in our neck muscles which compresses our occipital nerves.

      I am so sorry, I know EXACTLY how you feel. Focus on trying to heal your tmj problem and the occipital pain should follow suit. :)

      I hope you get this.

      Misty

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  20. After 3 years of agony, I finally got my diagnosis today! After over 30 doctors, every label and off-label medication besides injectibles, countless "home" and "new age" remedies, you know how the rest goes - mean doctors, being called a drug seeker, being told it is all made up in my head, being told it is all "rebound headaches," and on and on. I moved from Minnesota to Dallas, TX and had to leave behind my amazing and understanding primary doctor. I saw different doctors here and eventually went into withdrawal from my pain meds because I couldn't get any more. The pain meds don't even work that well anymore, but it is the only thing that dulls the pain and makes life a bit more manageable. Suddenly, a voice in my head kept saying "Neck... it's your neck... neck specialist" and I could not ignore it. I was in 2 car accidents within 9 days of each other, just before the big headache started. But I also was going through a divorce, finishing my Masters degree, starting hormonal birth control, and basically under the greatest amount of stress ever. I'd had a few stiff necks here and there, but the aching paled in comparison to the headache, so I paid it no mind. I summoned up my last bit of strength to battle yet another doctor to get a referral. It took everything I had, and this lady was especially angry at me, but I was not leaving without a referral to a neck specialist. The Spine Specialist pressed on my Occipital nerve and I screamed. He ordered a neck MRI, and said I had a bit of Occipital Neuralgia but there had to be something else because my muscles shouldn't be that tight in the places that they were. Most importantly, he looked me straight in the eye, and said "We are going to fix this." That brings us today for the follow up to examine the MRI films. I walked in and hadn't even sat down before he said, "I see it, we've got it, look, look" and pointed at the MRI. I have a herniated disc between C4 and C5, and it is cutting into my spinal cord and compressing it. I can't believe I was walking around with a herniated disc for 3 years and I didn't know it! The pain was so much like migraine pain, due to the Occipital Neuralgia, that it had me completely fooled. That's why migraine meds never worked on me - it's nerves, not blood vessels! I go in for surgery to fuse my spine this Tuesday. There still may be a little residual pain from the Occipital Neuralgia, but the doc said he would operate on that too if he has to. It's so amazing to finally have the possibility of being pain free. I hope that you find your cure as well!

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    1. So glad you have found the real problem . Would u please let me know how the outcome of your surgery was as I have the same problem as you and just wondering if surgery would help. thank you so much. Eisenblitter@yahoo.com

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    1. Anita,
      I am so sorry you are in pain. I was diagnosed with ON about a year ago after never having migraine headaches (at least not up to that point--now I'm making up for it, I guess). What has helped me with my neck pain is warmth--scarves (I wear them or carry them everywhere in case of cold drafts), heating pads, and the best thing: a microwavable neck pillow. None of these completely alleviates the pain, but they do make it more bearable. Cold is my enemy--cold on my neck (even on a hot day) causes instant, searing pain.

      I will pray for you. Please don't give up; there is always hope that it will get better, and there are good docs out there who will really help you.

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  22. Hi All,

    I'm posting this as I hope it may help some. I've suffered from headaches since being around 10 years old. Sometimes 3 times per week, the pain often starting in the left or right base of my skull and building up over my scalp and into the back of my eyes. The pain can become unbearable sometimes. Since many years I've been looking for solutions, the best results for me have been achieved by taking quite a lot of Aleve. The problem is that across time my stomach has been heavily impacted and it's very difficult for me to take NSAIDs orally.

    Around 3 years ago I discovered cremes and gels that contain Ketoprofen 2.5%. I wondered if applying a creme along the pain route would act as a nerve block. Amazingly it did! I rub the creme into the base of my neck, scalp, and even above my eyes (not the creme will burn if it comes into contact with the eyes however). Sometimes I need to apply a layer of cream over most of the neck, scalp, above the eyelids and around the ears. I apply the creme every 1-2 hours until the nerve block is established and the pain dissipates. This has worked for me on every headache for the last three years.

    The creme causes dehydration as its an anti-inflammatory. Once the pain is gone which can take anywhere from 2-6 hours I wash off the cream and apply a creme that hydrates the skin to counteract the dehydration. It's sensible to drink water regularly also while the cream is applied.

    It would be great if anyone else could let me know if they have any other similar solutions. I'm also especially interested in the effectiveness and any side effects of radiofrequency ablation. Does anyone have any insight?


    Thanks,
    Darren

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  23. I can remember suffering for a long time before I knew exactly what I was dealing with.. I even went as far as to make a website about the condition to help other people trying to figure out if their head aches are related to it. Good Luck to you all and I wish that your pain decreases substantially with time

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  24. I wanted to post another update and also another suggestion for The Permanent Headache. Spinal fusion surgery went well, but the head pain was actually worse after the surgery. I figured now that the damaged nerves are getting full flow again, they are malfunctioning and not knowing how to deal with "normal."

    I found a really amazing Neurologist who has treated hundreds of Occipital Neuralgia cases, and he is very understanding. He diagnosed a secondary condition which is Cervical Dystonia. It is very rare, 57 out of a million people have it (lucky me) and it causes your neck to be stuck to some degree sideways, forward, or backward from normal position. The muscles get really tight and squeeze the nerves, which causes more pain.

    Again, I read that you occasionally have stiff necks but don't feel much neck pain. I can assure you that I was the same way before my diagnosis. It's worth a shot! Do some research to see if it sounds like it could be it.

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  25. Occipital Neuralgia, Cervicogenic headache, I am not sure what is the proper label. All I know is that I am amazed as to how hard it is to describe to anyone who hasn't experienced this type of pain. To say that I simply have a headache is a gross understatement. Anita, I can sympathize with you on having thoughts of giving up. The pain radiating from the back of my head awful. So distracting that I too am now not working. I have made my living as a furniture/cabinet maker for 14 years, now I sit still most of the time. Sitting still is so very difficult. But no matter what I do, the screaming pain is constant. I try hard to always refer to it as pain rather than a headache. Most people have had a headache, so they think they understand. No one I know personally can relate to what I am going thru. I am so glad to be sharing with people who understand. I have been on Neurontin and Tramadol for six months now. Before that it was the typical grab a name from the hat, and see what opiate pain killer will frustrate me, and take me a bit closer to insanity. I am on 3600 mg of Neurontin it definitely helps. But I am now a half wit gold fish. My memory has been so compromised. The simplest question can leave me slack jawed. So grateful for spell check. One of the hardest things is the way my wife now looks at me. It is no longer lustful, and playful. Most of the time it is with pity. I am so lucky to have her, but the her I used to know is looking at the me she used to know. I have had 5 diagnostic facet nerve block injections. Monday the 6th of august I had a radio frequency neurotomy. I have no relief at this point. Everything we have read is that it takes 2 to 4 to 6 weeks for results, ugh. I am scared! I don't want to live like this. We all have so much to live for. I feel so lonely in this pain, even though I have my family. They are so supportive, but somehow I feel isolated. I am so glad to find this site. Keep up the fight. I don't know you, but I am now pulling for you.

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    3. Hi paul, This is exactly what I have! Occipital Neuralgia, Cervicogenic headache.. the headache with no real name or description. I had a car crash 12 years ago, didnt notice much, but broke by C7. 6 years ago, i started getting headaches i tried amitriptyline, couldnt handle it with work to doppy, 4 years on i try nortriptyline, it gets worse, 2 years ago i get on the nice cocktails that try you on, pregabalin and topiramate seem to work the best, but the neuropathic pain is constant, and the pain in the spine and the muscular pain caused by all the misfiring nerves cause my shoulder muscle to constrict and my throat so tense drives me suicidal.i get so angry and sore, sometime violent, ive driven rifts with most of my friends and my family, spend all my time in my room and am currently on sick leave. my doctor is thinking of one of these electronic implants. i used to have a great career and fun life....

      recent update.. ive combined GABAPENTIN, PREGABALIN and TOPIRAMATE.. i must admit im fairly dopped up, but the pain reduction is the best its been. ill keep updates.

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    4. Lim sorry, but I know how you feel. I too have had numerous facet injections, a radio frequency ablation, nerve blocks, as well as the implantation of the nerve stimulator and Botox. I feel like I'm losing my mind, nothing seems to work, the headache is so bad 24/7 I no longer work or have a life. I just want my life back..

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  26. I was diagnosis with ON in May 2010 after suffering an excruciating headache on the back of my head for 2 months (pain level 10). Since then I have had 3 severe episodes where I cannot go to work. I have had my 3rd nerve block on Monday night. Finally feeling some relief. From a 10, my pain level is now about a 3. I have ON (pain level 2-3) episodes almost all the time. Heat pads and massages help a lot. I had to recently change health insurance. So I am in the process of again navigating the paper to get the necessary follow up. It is a pain that no one would understand unless you are experiencing it. I had my latest shot in the emergency room. The nurse told me that I


    am pretty calm although I am in excruciating pain. Going through this pain for the last two years, I have learned to just take the pain as part of my life. To all those who suffer from ON, I understand.

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  27. Two weeks two days in, some relief during the day, evening taken down a notch. But overall no real significant change. Hopefully soon. I want my life back.

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    1. I understand there is a plastic surgeon in Houston tx that has high remarks for this surgery as well if that is closer. Please keep us posted after the surgery We have all got to find an answer. Hope all goes well














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  29. OMG! I have had 4 craniotomies and 1 laser(gamma knife) surgery. A tumor develop after being struck by lightening almost 25 years ago while working in my office for a state agency. I've had multiple brain surgeries as originally I was told that the tumor could not be fully removed because of it being located on my main vein; so thus the 5 surgeries due to recurrance; however, I was able to have a neurosurgeon who specializes in BRAIN TUMORS at MD Anderson Cancer Center in Houston, Texas who performed the last surgery in October 2011. With the advancement of technology and with his skills, he was able to remove the entire turmor which had grown very large. Needless to say, I have endured horrible headaches for many years. It wasn't until about 3 years ago that I was diagnosed with ON. The shots didn't help, but Lyrica has helped some, as a preventive method. There are so many triggers; critical thinking, stress, eye strain, certain scents, etc. that can cause severe pain. I have had to retire from my job that I loved dearly and now I spend my days and nights in great pain. I pray for all of you who have to endure this unfortunate pain.

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  30. i know how you feel i am going on 75 str8 days with a headache they say that i have 2 tia's mini strokes from the headaches getting so bad but they cant figure out what is causing them because mini strokes dont show on cat scan or mri i just want relief

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  31. I've been diagnosed with Occipital Neuralgia over a year and a half ago. Being a full time college student and trying to maintain a job has been very difficult. I've been on over 11 different medications and have tried acupuncture, physical therapy, cryoblation, and 4 procedures of radio frequency. NOTHING has worked. It's a struggle to have to get up every day and deal with this PAIN. No one should have to deal with this on a daily basis. I'm hoping to find relieve sometime soon because this is not a way of life I plan on living with forever.

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  32. Hi all just doing some research and found this site. I am hoping all of you find relief... Just yesterday I had my Chiro really feel where my pain was coming from and my left occipital was jammed (could it be from a head injury 27 years ago hitting a high line pole with no helmet on a three wheeler) the noise of the adjustment was extreme and the migraine come on slowly into the night with the change as morning came I was comfortable and itching all over head, neck ect... I help most people with their headaches being I am a Massage therapist with Cranialsacral training, so I am encouraging for you to NOT give up!! Crossing my fingers that I have figured out my pain area and on my way to feeling better. I have been in pain at least 17 years on and off so dont ever give up.

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  33. Having been successfully treated for occipital neuralgia with a nerve block, I would strongly advise anyone with headaches to see a neurologist who specialises in headaches. I cant emphasise enough to get one who specialises in headaches, rather than just a general neurologist or one who specialises in other areas.

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  34. Hello. After suffering for about a year with ON, I had RFA done at a headache/pain clinic in Northern California. It has been just over 3 weeks and things are slowly improving. I still feel a little off and dizzy quite a bit, but the pain has diminished greatly.
    I'm still very cautious of how this is going to play out, but I'm optimistic that they know what they are doing. I'm scheduled for Botox injections in about a month if the RFA doesn't work. I just wish I could get some decent relief from how sore my neck is all the time.
    I very rarely take pain killers, but I have found that the low grade anti-depressants like Elavil have really taken the edge off the headaches on a daily basis. It also takes the edge off my going insane. I'm only on 50 mg, but I'm convinced it makes a huge difference.

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  35. I could fill a book if i tried to cover what i have been through in the last year and a half.
    I started out with my left ear feeling 'popped' and there was a bit of an ear ache.
    I ended up at an ENT who did a CT of my sinuses and recommended a septoplasty and cleaning out of pollups.
    I had that surgery. The recovery was about the worst thing that i ever experienced.
    After 6 weeks of recovery, I could tell that I not only still had the earache, but it was worse.
    He recommended that I see a dentist about TMJ.
    I had months of being bounced between ENT's and Oral Surgeons, each pointing me to the other.

    Then I saw a neurologist who diagnosed Occipital Neuralgia. First she put me on Lyrica and Nucynta. The Lyrica made me insane and had me hallucinating.
    Then we tried Neurontin which had me as dumb as a brick.
    I am a self employed computer programmer and I don't earn a living when I'm dumb.
    Then she had me try Cymbalta and it was like a light switch. That with the Nucynta and i had 2 months of life back.
    I don't know what is happening, but now the headaches and earache are breaking through that and it's coming back, which scares the hell out of me.

    Reading these posts has also scared me because I'm only at 1.5 years. I can't imagine having this as long as some I have read here.
    It has also given me some hope that there are some possible treatments.


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  36. I failed to mention that i was also just recently diagnosed with Meniere's Disease.
    That explains all of the pressure in my ears and the ON explains the pain.
    I was looking for one solution to why i was miserable and in the end have found that i have 2 conditions that have converged on my left ear.
    It turns out a low sodium diet helps back off the Meneire's symptoms.
    Just 3 days ago my Neurologist give me 4 shots in the back of my neck. The shots with the Cymbalta and the Nucynta have me almost 100% pain free today!
    I am hoping that the shot thing lasts for a very long time because i haven't felt this alive in a year and a half now.

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  37. My 15 year old has had Occipital Neuralgia for 16 months. His life has changed dramatically. As his mom, I share his pain. We have tried medications, nerve blocks, chiropractors, and physical therapists. My observation is the combination of blocks & physical therapy was best to date. As his pain is escalating again, may be time to go for another nerve block. If I hear of anything that "eliminates it for good," I will certainly post it. My heart and prayers go out to all of you.

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  38. A few months ago, out of the blue I experienced the most excruciating pain in my right temple area. I couldn't touch the area, or brush my hair. Even the wind blowing on it was unbearable. The doctor thought I was coming down with a case of Shingles, but I never developed a rash. Now months later, the pain is still there. It never completely goes away, but some times are definitely more painful than others.

    I have also suffered from chronic Migraines since 1998. This pain is different, but it will sometimes trigger a migraine. I also have extreme pain in the back of my head, near where the base of the skull and the neck meet. My neurologist has me on Fioricet and Gabapentin. It helps, but doesn't make it go away. I also take Topomax for the migraines and feel like I am in a void most days. I don't know what to do next. My GP seems to be at a loss and my neurologist seems to think this will fix it. I've also had injections into the nerve. The first one was successful for a few days but the last two were pointless.

    I haven't been officially diagnosed with ON, but it sounds like maybe this could be my problem? I am trying to keep positive. I have two small children and they deserve the best of me. I just don't know how much longer I can keep going like this, with this pain. I've never felt anything like it in my life.

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  41. I had an accident..heavy object swung and hit me on the top of the head. It herniated 2 of my neck discs and gave me occipital neuralgia. I am seeing a therapist. The main problem I am having is that I don't know how much of the pain is from the herniations and how much from the neuralgia. I try to swim a bit and while during I don't feel too bad...afterwards, I suffer so much that it makes me feel like I am making things worse...but how could I be..i go twice a week and want to up it to 15 minutes 3 times a week because of ..it is exercise..it makes me feel normal..arms hert and hhands...so I ordered mackenzies book heal our own neck and I am going to try to get rid of the neuralgia and then I will write a book to healp others..only thing is that I don't know if it will get better..yet after back surgery my back nerves there got better. I will be seeing a neurologist on Oct. 28..will keep everyone posted. I hope everyone keeps staying positive ..we can help each other..we will come up with a solution everybody...knock on

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  42. Hi Everybody,
    I have occipital neuralgia. I have had it since May 31, 2013. My goal is to have it gone by May 31, 2015...and I hope that we can all get over it. So, what has worked with me is normal stuff but some people might not know it so here goes: magnesium citrate powder mixed with hot water dissolved and you can mix some juice with this for flavor...don't use more than 1-2 teaspoons..it is over the counter..it is called Calm. This is how I sleep. You lose a bit of balance during the night..hod on to the wall...no big deal right! Second, ice packs work for me on the base of the skull. Put in a cotton pillowcase piece like an envelope and hop around neck with a long strip of bed sheet..not so embarrassing a look at home. Third, the blair technique is one that the physical therapist could use ..it may be your C1 vertebrae that needs adjusting. Rob someone has a success story google this and he got cured from a therapist which manipulated him whe had 25 years experience...well, I have ON plus 2 herniated discs..the latter as mentioned I will try the Mackenzie technique..i will keep you posted..i am a lady middle-aged if that helps follow me and I will help everyone..we can do this ..knock on

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  43. Hello Again,
    I have noticed that there are about 20 ways to adjust the upper cervical, two of which are the blair method and the nucca method. The problem I am having with nucca is all the images..have already had 8 images this year..radiation but may still try nucca..so it seems apparent that an upper cervical adjustment is causing the occipital neuralgia and so beta blockers or abulations would be temporary solutions. However adjustments are more pro-active and ..well, gulp...so if anyone out there has a preferred technique..it is upper cervical adjustments..wiki gives the list..i am going to do one of these but I am hoping someone answers my blog about what method they believe in so I can decide myself..i plan to read about each of them before I make my decision and then I will post my results..i may get my adjustment as late as feb....nucca is pricey in my home towm..7-9 adjustments and 350. per...so hope all of this research works..knock on

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    1. Hi everybody,
      I am undergoing the Mackenzie method physio treatments..it is supposed to get rid of my cervical herniations. I am going for 1-2 years and I think it will work. When I am done I will let everyone know if it worked for me..i think it will....good luck everybody.,,,i am going twice a week....bye

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  44. Hi everybody, I got ride of my occipital neuralgia in 5 and a half months..did the Mackenzie neck exercise for 2 months twice a week with a physicand did every 2 hoursrecommended exercises and got an atlas orthogonal treatment ..3 days 16 adjustments and took off 2 weeks from physio besides one week trip ..so 4 and resuming physio which goes again technique but doing it for strength and flexibility...a bit of discomfort behind right eye...doesn't usually happen to people with this chiro method..thinking it will go away otherwise good. good luck everybody

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