Occipital Neuralgia Online Support Group

Hello,

As I think I've mentioned before I have not been officially diagnosed with ON, but rather New Daily Persistent Headaches that they doctor says might be coming from cervical issues - lack of curvature, bulging discs, DDD, etc.

When I asked about ON - he says true ON involves severe shooting pains in the back of the head - not the more constant aching that I experience. He says that I may have occipital irritation, but not neuralgia.

Here are my symptoms for the last two years. Right sided headache. Typically in and around right eye. Right sided neck/shoulder pain. Constant pain at the base of my skull - feeling of something needing to "pop." I often get a feeling in my eye like a piece of hair is scratching my eyeball. My headache is a generalized ache, as well as intermittant stabs of pain in the eye. In the beginning the headache was there 24/7. Now, I have a headache at some point on most days, but I also have some pain free time. At times I will get a few good days in a row (those are wonderful but also tough b/c when the pain comes back I get so depressed after remembering how good life can be.)

I have tried physical therapy, myofascial release, traction, chiropractic, massage, etc in an attempt to improve my neck and by association, improve the headache. Unfortunately, while these things do provide some temporary relief, I did not find any lasting improvement and that's one more reason the docs seem to think the headache may not be coming from my neck/ON, but rather they are just conditions that I'm suffering from at the same time. I just think it's odd to have all the pain on the same side and for their to be no correlation - but I'm also desperate to find some answers and relief so maybe I'm not being objective.

I'd like to know from each of you how your symptoms compare/constrast to what I described. Do you have the shooting pains at the back of your head that my doctor says are necessary for true ON? Do you have an almost constant headache or is it intermittant? Do you describe the headache or neck pain as your primary complaint? I go back to the doctor on Friday and would like to have some of this information to better prepare me for my discussion of next steps with him. I really appreciate any guidance/insights you can share. I hope all of you are having a good night.

Take Care,

Wendy

One more question - I think on Friday he may want to do nerve blocks in the back of my head. How many of you have had them and what was your experience? Do you think it's worth a shot? I'm very worried about it spiking my pain or causing the pain to increase and then not go back down.

Post edited by: WendyLou, at: 11/29/2009 03:06 PM

Hi Wendy,

I guess I'm not quite sure why he thinks you DON'T have ON? Just b/c you don't have a shooting pain? I also suffer from DDD. Have lower back fusion. My Pain started in my shoulders and neck, feeling like bad muscle spasm. However when I woke up Aug 19,2002 I thought the back of my head was going to explode. I truly thought I had some massive bleed and went straight to the ER. Once I had an MRI (which of course was normal) they told me it was ON. I did however at the same time have multiple discograms to make sure they weren't causing the "pain". I have so much pressure in the back right side of my head some days nothing can touch it. When the "pain" is severe it feels like someone is snapping a rubber band in there. Like there'e a misfire and it comes all the way up my head into my right eye. After numerous trigger point injections, facet blocks, rhizotomy of the greater occip and also c3-4 I got maybe a couple weeks of relief at the most. While also still taking many "pills" b/c the procedures where horrific. I ALWAYS would have a flare up of pain after any procedure. I decided to have the decomp surgery and got absolutelty NO relief. Eleven months later Knowing my neck was NOT good I thought maybe if I took care of that I would get better. So fused my neck 3-6 and I woke up with me neck feeling GREAT, however the back of my head was still ready to EXPLODE!! I CANNOT get relief. I've taken too many drug "cocktails" to even remember. I just keep hoping I will wake up one day and it will be gone (wishfull thinking I know). I hope I helped in some way. Keep us posted. Goodluck with your appt.

Be Well,

Susan

Hi Wendy,

I forgot to answer your last question about the nerve blocks. I had many. Yes, mine spiked my pain to an unbearable pain but I did get about 2 weeks "pain free". Not knowing your "quality" of life right now I tend to think we would all do anything to get rid of our pain and what works for one may not for others. I also think anything we do to "aggravate" that nerve it will pay us back dearly but what if your one that get's months of relief? I know it's a tough decision and everything we do is ALWAYS a double edge sword!! For me it's NOT worth the pain but for you it may be...Yea, your saything "thanks" for nothing!!lol....I'm sorry!!

Thinking of you,

Susan

I would say if you do it...Ice, Ice and Ice when you get home!!

I do get what I call lancing pain, could call it stabbing too but I think lancing is better (kinda a stab with a lightening bolt = lancing, to me anyway). But I have the constant ache of feeling like somebody beat the back of my head with a paddle/bat.

A nerve block should help Dx ON. Nerve blocks are great, the lidocaine hits right away and here comes the sweet relief! Then that subsides about 8 hours later and then you spike for a day or 2 and then the cortisone in the shot takes effect and you get relief - my last one only lasted for a week and 1/2 of relief. I get my nerve blocks in the scalp; if you get yours in the c-spine I don't know how those work.

If your doctor doesn't help you more, I'd get another opinion cuz you sound like ON to me.

Trix

Wendy, sorry for the delayed response. Mine started mainly with the pain in my right eye/forehead and sensitivity on the crown of my head. This began suddenly, but I have alway hd neck muscle tightness and after my C5-6 ACD with fusion things just got worse in my neck. The pain continued and for over a year after surgery no one could figure out why. When the eye/forehead pain started I was dx. with SON (Supraorbital Neuralgia). My head/neck pain started about a year after the forehead. My neuro sent me to my PM doc for injections which confirmed my ON/SON. The top of my neck/base of skull feels so hard that I sometimes thinks it's going to implode. I do get the shooting pain up the back of my head and behind my ears often, I've had a headache non-stop since I was dx. with fibromyalgia in '92. I had injections in the back of my head when the eye pain/head sensitivity started but I didn't feel much of a difference, but the ON hadn't really kicked in.

My neuro didn't know how to treat my ON so I told him that I wouldn't be back.

Hope this info helps. Patty

Thanks to all you great ladies for your responses. The more I read the more I think this has to be impacting my headaches. I just have this constant pain at the base of my skull, to the side of my ear, and then down by my jaw bone. That is accompanied by the eye/forehead pain and neck ache. I'm going to bring it up again when I see him on Friday. I just don't believe the the NDPH doesn't have a cause. I had neck pain for 10+ years before the constant headache. But since the headache came on so suddenly and didn't respond to physical therapy they say it can't be from the neck. Patty - How have you stayed sane with a constant headache for 18 years? It's been two years for me and I feel like I'm losing my mind.

Wendy, who said I was sane? LOL. I just got used to it, it wasn't a horrible heacache, maybe a 4 most of the time. It came when the fibro started. but this ON, it's a beast. Wendy also google (use the image search) and type in supraorbital neuralgia. That's what the pain is in the eye/forehead area. It's from the C2 also. The neuro-ophthamologist told me that they could cut the nerve,I think it was the V-1 nerve, however that runs through the top of the brain and they'd have to open my head, no thanks, no ones allowed in there, it would be to frightening for them. I turned him down on that one. I went on my own, PPO insurance because I wanted to make sure it wasn't anything in the eye. If you take you finger and put it on the inner eyebrow of the eye that hurts, move you finger down towards the eye and you'll feel where the skill is and there is a little notch. That's the nerve that causes the frontal head/eye pain. If you push the notched area/nerve and it hurts, that Supraorbital neuralgia. I have gotten 2 or 3 injections of steroidcaine in that notch. The first time I could just feel it going in and the pain was gone. It helped for several months to tame it. The second one he came in from a slightly different angle and this time the forehead, head and neck went numb and the pain diminished for weeks, I was thrilled, but I just had a third one about a month ago and it only gave me a few days. Look into it and ask you neuro about it.

Tomorrow I go for a Rhizotomy for my C5 & C6 nerves. This is my only option and it better work. Then I have to deal with 3 more nerves. I did ask my PM if he would just burn all the nerves from top to bottom of my spine. He laughed, I was serious.

Okay, I'm finished babbling, I'm a little nervous about tomorrow. Take care all and I hope I'm back on the boards in a day or two.

Hugs,

Patty

wENDY,

i HAVE HAD DOCS GIVE DIFFERENT OPINIONS - ONE DRUGS ONLY, ONE STIMULATOR ONLY, ONE NERVE BLOCKS ONLY - ALL DEPENDING ON THEIR SPECIALTY. AND PATTY, I KNOW BY NOW YOU HAD THE PROCEEDURE BUT WISHING YOU GOOD RELIEF.

CAIT