Great to hear from you. No, you are definitely not alone...although you are the first person I have encountered who also has ON! So much of what you say rings a bell...frequent trips to the doctors and the ER...worried about a brain tumor...yes, yes. The blank looks on the doctors' faces in the ER when I described my symptoms still bother me. Even one of the neurologists I saw didn't know what ON was. The weird pain, tingling, itching, pinpricks, etc. in the head are so hard to describe. Before I finally got diagnosed, the anxiety regarding whether the symptoms the sign of some horrible brain condition was overwhelming at times. Yes, I also would occasionally feel the tingles/pinpricks elsewhere on my body, and on the side of the face near my temples, but not very often. I had a lot of itching on the top/back of my ears though and once in a while one of my ears would turn deep red.
Have you found any swelling on your neck near the injured nerve? I noticed a swollen patch at the very top of my neck behind my left ear while my symptoms were bad. The swelling went down vanished as my symptoms went away. Even though my symptoms have been mostly gone now for over a month and a half, that area is still a bit "sensitive" to the touch. My doctor thinks that is where the original nerve injury was.
That is interesting to hear that the steroid injection helped you. I will keep that in mind if my symptoms return. I have read that nerve block injections can help too. Basically, my experience was that nothing but time and patience helped my symptoms go away. I tried Tylenol, aspirin, prescription Alleve, hot packs, cold packs to no avail.
It is frustrating trying to glean information about ON on the web, because there just isn't much there. One interesting thing I have discovered is some doctors have linked ON to bad posture and walking and exercising with the head down and forward. Somehow, bad posture causes the occipital nerves to be impacted and injured. That rang a bell with me because I have always slouched a bit and haven't been good about good posture when standing, running or sitting up. Needless to say I have really been working on my posture now. It is all so weird to be doing this for the first time at age 40, but anything is worth a try to keep the symptoms away.
Thanks again for writing and sharing your experience, it was very helpful to me. Feel better soon and let me know how things are going!
(P.S. holmesla, do these symptoms sound familiar?)
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.
To clarify, I had some headache symptoms too that did not seem to respond to medication, but they were usually accompanied by scalp tingling, itching, or extreme sensitivity on my scalp and neck (almost a sunburn sensation). If you don't have these additional symptoms, maybe it's not ON, or maybe it is and your symptoms are just different. Another possibility could be an injury to the joints at the top of your neck which is causing pain to radiate into your head. I have heard of that happening with whiplash injuries. Hopefully your neurologist visit will shed some light on what is going on.
Hope you feel better soon.
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.
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!
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.
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.
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!!!)
Yes, I beleive the severe coughing could have been what caused your ON. I have had it now for over 1 1/2 years and have no reasonable cause of mine that the DR.'s can find except for the coughing. I had a severe sinus infection before all of this started and coughed like crazy. Not long after I started having a severe headach that lasted for just over 6 months with no break. I was diagnosed with ON right away that lead to maybe cluster headaches and back to Occipital Neuralgia. I have had a Brain and Cervical Spine MRI's done with nothing found. I have also had 5 nerve block injections performed with little releif. I have tried neurontin, mobic and several migraine medications with no relief. The only thing I have found to work is Cymbalta. I have been on Cymbalta now for over 4 months and I can still feel the pain now and again but with the cymbalta I guess it does not seem to bother me as much. I thought the Dr. must have thought that i was depressed and that is why he tried that drug. But I have done research to find others that have found this drug helpful. There are a few side affects at first but I made it through them and now I don't really notice any of them.
Maybe this might help...ask your DR.