Occipital neuralgia caused by running?

I have recently recovered from my third bout with occipital neuralgia in three years.  I know this is not a common or widely understood ailment, but am wondering if someone here has experience with it.  Thankfully my symptoms are now dormant.  The main thing I'd like to know, and which the doctors can't seem to tell me, is what to do to keep it from coming back.

My symptoms originate from a nerve behind my left ear that seems to be getting repeatedly irritated, causing headachy/itchy sensations in my head and sunburny sensations on my neck.  (Recent MRI was normal.)  One of the things my doctor asked was whether I had any sports injuries, blows to the back of my head, car accidents, etc. and the answer is no.  But my first encounter with occipital neuralgia--which came about three years ago-- occurred about eight months after I decided to take up running several times a week for the first time in my life. I have continued my running habits since then and the symptoms have come back twice.  I have to wonder if there could be a connection, but I'd hate to have to give up running since I derive pleasure and health benefits from it.     

Any thoughts, anyone?  Thanks in advance! 

I just have no clue what is wrong with me. I was in a vehicle accident the day after Christmas. I wasn't hurt as it wasn't that bad of an accident. I went on with my life as normal. about two and a half weeks later I began getting headaches. (could be beore that, but you get a headache, you take medicine and then forget about it).

Anyways, I kind of figured it was a migraine and just took iburprofen. That didn't work, so I tried Midrin, which I had for menstrual migraines that I get sometimes and that didn't work. I finally went to the doctor. I don't want to bore you with the details. I have been to the doctor a few times, been on multiple pain meds, including narcotics, and no preventatives, no abortives including narcotics help with the pain. I did decide to go to a chiropractor and he said I have whiplash. He has been working with me and seems to be helping with the pressure I was having in my neck and back, but not helping with the headaches.

The symptoms don't really sound familiar...I just have pain...everywhere, particular where my occipital nerve is.

As for the pain. I have had one headache for 5 weeks no. Constant nagging pain that never stops, but the intensity does change and somestimes the location changes. It is so hard to explain and understand myself. I have pain in the back of my head and many times I feel like a pinching in the back of my head, where it meets my neck. My entire head aches, from the back of the head to my forehead. My temples hurt as well. Every now and then they hurt so much it feels as if they are about to burst. There are also times when I just wake up and it just feels like someone has just beat my head with a baseball bat.

I see a neurologist this week so hopefully he will figure it out because this has gone on way to long.

Hi Carrie,

My symptoms seem to last for about 3 months.  I think the first time I may have had the symptoms longer, but can't recall for sure.  They are mild the first month, then get worse in the second month, and then at some point in the early part of the third month they start to get better again.  At a certain point I don't notice them anymore for days, from then on I still get a tingle/itch or two every few days, but nothing major.

You are absolutely right about sitting at the computer--that is when the symptoms get worse for me also.  Since my job requires a lot of computer time, it makes things difficult.  I am pretty sure now that the posture of leaning forward looking at the screen must be part of what triggers the problem.  I find sometimes if I get up and walk around, I can clear my head for a little while.  During my last bout with ON, I started avoiding using the computer while not at work (hard to do since I am an internet-aholic).  I am not sure if that sped up my recovery, but it seemed to help.

Are you feeling at all better now? Do you think the anti-inflammatory shots are causing the symptoms to improve for more than a short period of time? Anyway, you should be feeling better soon, I think!  Or if not, we can keep comparing notes until you do.  Hang in there and please keep us posted.   

Brian

p.s. good luck tomorrow holmesla!

holmesla,

Very interesting! I'm glad the neurologist was able to identify the problem so quickly and precisely.  Even if it's not ON, it sounds very similar.  Let us know how those occipital nerve blocks work for you.  I had read that they can be very helpful for ON patients.  I'm sorry to hear you don't feel better yet, but you are right, these things take time.  Hope you feel some relief very soon!

Take care,

Brian

Carrie,

That was a nice find, thanks for sharing it!  I wasn't aware that this surgery was an option for ON, although it makes sense that it would help.   Let me know if you hear back from the institute what the success rate is.  FYI, I found a reference to a drug called Neurontin being used for treating ON.  Even though I'm symptom-free at the moment, I want to learn as much as I can so I'm going to research it some more.  I'll let you know if anything interesting turns up.   Did I mention that the first time I had ON, it was misdiagnosed as an infected subcutaneous cyst? I don't think many doctors are trained to recognize it.  Anyway, hope you're feeling better.

Take care,

Brian

Carrie,

I think we have the same thing, and received the same misdiagnosis.  I get an area of swelling on my neck each time I have had ON, behind my left ear, just below where neck meets skull.  The swelling isn't noticeable when the symptoms first emerge, but as my scalp irritation etc. get worse, I start to feel "the spot" forming.  At first it is vaguely defined swelling, but after a while it forms into a small oval shaped cyst-like spot beneath the skin.  It is pliable to the touch, not hard.  Like you, I sometimes feel pain and pressure coming from it.  The pain/pressure is more noticable if I bend over to pick something up, or turn my head in a certain way.  I also feel a "pulsing" sensation coming from the spot when I touch it with my finger.

As my head symptoms improve, the spot gets smaller and smaller.  Then one day I find the swelling is completely gone, and my symptoms are gone as well.  Even after all head symptoms are gone, the spot is still sensitive to the touch every once in a while, and I sometimes feel a twinge there.

Based on discussions with my doctor, it seems that this spot is the source of the ON.  It is there that the nerve has been impacted, causing swelling.  As the nerve heals, the swelling goes down.  Apparently, the pain and pressure there are actually caused by little spasms in the nerve.  Weird stuff!

Anyway, I hope this is helpful and that you feel better soon!

Take care,

Brian

Hi Carrie,

Glad to hear your scalp pain has mostly gone away, for the moment at least.   I found that the other symptoms (pinpricks, tingles, itching) were more constant, and the scalp pain/sensitivity tended to come and go more.  At the end of my ON "cycle" I end up with just the other symptoms, no scalp pain, and then those symptoms finally disappeared too.   Yes, it is very scary to find any swelling on or near your head.  I was very worried, but after the MRI of my head came out normal I felt much better. 

When you are driving, are you keeping your head back?  It sounds crazy, but I think that posture is key to ON.  I recently tried to confirm this by walking uphill with my shoulders slumped and head forward, and I could actually feel the muscles higher up in my neck--near the irritated spot--becoming constricted and tense.  Then I corrected my posture while walking up the same hill and noticed the main part of the tension/stress moved downward to the middle of the top of my shoulders area.  It was fascinating because it seemed to confirm that bad posture plays a role in creating muscle tension/stress in the occipital region. 

I did read the website and am not sure what to make of it.  I have always been squeamish about surgery, so I probably will not pursue that unless my symptoms come back and more conventional treatments don't help.  I think I would seek a second opinion before doing any surgery.  The problem may be finding a doctor with enough expertise in ON to actually give a second opinion.   Please keep me posted on your progress and research.  Yes, it is great to have someone to talk with who understands the VERY unique symptoms we have experienced with ON.  At least we know we aren't crazy!  Thank you also.

Take care,

Brian

I am so excited that I found this forum!  I don't know if I have ON or not, but the symptoms sure do sound like what I'm experiencing.  It all started the first week in Nov. when I had a bad bout with my sinuses.  I coughed violently for 2 nights, and I remember how bad it hurt to cough.  After a week, all the sinus symptoms left except the headache - and it's STILL here!  From that time on, it hurts to cough or sneeze or bend over.  In Jan. I had 2 weeks of physical therapy, with the dr. thinking it was something in my neck.  But it was much worse after the 2 weeks.  In fact, after my last session I had my first episode of tingling, weird head things going on.  (All they did in therapy that day was heat and the electric impulses on my neck)  It felt like someone was blowing my head up like a balloon - it kept getting bigger and bigger, until I honestly thought it was goint to burst!  Very scary!!

Since then I've had an MRI on my head and neck.  The only thing they found is osteoarthritis (which I knew about) and bone spurs on my neck.  But the neurosurgeon said my neck looked like any other neck my age.  He thought I was either crazy or depressed.  One of my triggers is bending my head just slightly, like when I'm writing something or bowing my head for prayer.  And when I told him that I was really hurting from filling out the form in his waiting room, he suggested that often when we fill out a form like that, it reminds us of how bad we feel and that makes us feel worse!!  (Thanks for caring, Doc!)

When my symptoms are bad, I can't lie down.  That's when the "balloon-blowing-up" symptoms start, and I have to immediately get up.  The only way I can sleep then is sitting up, and one night I found that I couldn't even rest my head against the back of the sofa.

I've read that an MRI can't detect it if it's ON.  Have y'all found this to be true?

My family dr. (actually, she's a nurse practitioner) is willing to try anything and will investigate until she finds what's wrong!  Can you give me a particular website that would be helpful for her?  I don't know if what I have is ON (I've also looked up "cervicogenic headache"), but it's exciting to know that other people are experiencing something similar to me!  (Sorry, I don't mean to rejoice in your pain!!!)

If it is ON, do you think that "violent" coughing (MY terminology) could have started it?  And could the electric impulses from the physical therapist have made it much worse?

Please don't stop this thread - I need to hear what you all have to say!!!

Thanks so much!  Nancy

Has anyone experienced this?  Place your hands on the back of your neck just to the side of the spine with fingers pointing toward the spine.  There's a soft spot, dented sort of place just below where the head and neck come together and next to the spine.  When I press gently I get the same sort of "full head" sensation that I would get if I pressed on my carotid arteries.  It's like my head is filling up or something.  Now, of course I'd never done this prior to having my "strange headache" so no idea if it has anything to do with anything.  I just fine it interesting.  I mentioned it to the neuro and got a blank stare.

Jeanne