Possible Occipital Neuralgia

Archive Blogs (Read Only)
1

Something I’ve denied possibility of to myself for a while now. I’ve always allocated the pains at the back of my head / neck area to some weird form of my TN variant. As more often than not, this type of pain has often accompanied my TN attacks too.

Last night, while watching a movie from my recliner, I realised that my neck felt stiff and thought to rub along either side of my upper cervical spine in hopes of relieving the stiffness and very dull ache I felt there.

It was a mistake. Since then, I’ve tried heat cream, anti-inflammatory meds and mild analgesics. Nothing works. I also learnt that my facial triggers on the right sided TN are more prolific and ultra sensitive. I’ve had much worse pain so last night wasn’t a write off. But once again, reviewed the studies and sites I’d favoured online regarding ON.

I had all symptoms of ON displaying last night, with maybe the exception of light sensitivity - hard to tell, if mild sensitivity was displaying - I did find that when I closed my eyes for an extended time, to try and prepare for sleep, that the pain level dropped marginally.

Oh, but who knows. It is not up to me to decide whether or not I have ON also. If my doctors agree - I am curious to ask them whether or not scoliosis might play a part in the affectation of this, in relation to the apparent “greater and lesser Occipital nerves”. My scoliosis is mild in comparison to many, but the fact I had scoliosis was never identified till I was 21 and torso scans of my body when I was in hospital then with a pinned up hip to femur from a riding fall. No one ever identified earlier with the fact as I grew up through puberty, that my head and neck sat further forward as I matured, they just said I had terrible posture through high school.

I will ask my Doctor for cervical and thoracic spinal x-rays. That will be a start, get a picture of what’s happening both from straight and side views and see if I can get my MRA in September to also view from C1 -> C3 in my cervical spine to see if I maybe just have a pinched nerve somewhere in there. Maybe they can find a simple way to relieve the pressure on a pinched nerve and assess potential damage to the occipital nerves.

Cheers to all ~ it’s mid-morning on a Sunday now, so nothing will be done today. And to be honest, I’m frightened of the next two days anyhow, as after my first dentist appointment a few weeks ago, within 48 hours I was admitted to hospital with a major TN attack. Then last week, less than 24 hours after my Dental appointment - I was back in that hospitals ED for more than 9 hours. Well, I shall take my morning meds now as I was late clawing myself from my bed this morning after getting to sleep well after 5 am. My Mum has asked me to join her and one of my Uncles shopping at a huge monthly market near her place today - which I won’t make it to now before she heads for home again. But I do need groceries. Milk especially.

I went to a Church fete yesterday where their constituents had donated so many things to sell and raise money for the church, I bought a half dozen baby plants, a few books, a couple of posters, some kitchenware and clothing items. In the clothing area - I found for myself a very large Pure Wool overcoat, almost knee length and with full lining and a “Made in Italy” tag sewn into it. Shall be great for the coming winter months. A bit large for me but that is perfect, to fit over my regular outdoor clothes :slight_smile:

Ok, well that is me finished off my blog today on a happy note. I hope everyone of my friends here is having the best of weekends, and I want to hear about it if you are not! That is what we’re hear for. I feel everyone here has done their fair share of listening to my growing issues of late - so I’d rather other people don’t hold back in return!

My Best to all of you!

Kerry xx

2

Kerry, so sorry you are continuing to have so much pain. As you know, I too have ON. I don’t know about the scoliosis, but based on anatomy it certainly makes sense that it would further cause exacerbation of ON symptoms.

On a personal note, when my TN and ON were active at the same time, I existed in even more horrific pain. The ON pain made it even more difficult to sleep and function normally. I couldn’t sit. I couldn’t lie down. I couldn’t recline in my easy chair. Sometimes I just couldn’t move at all. Nothing seemed to work. I can say with certainty that when the ON was going strong, I found myself even more desperate to end the pain and I often ended up in the hospital emergency room seeking some modicum of relief. While the medication often helped me relax and fall a sleep for a brief time, the PAIN always returned with more fury. Stress certainly makes the ON more formidable to handle!!

Approximately 2 weeks before my MVD surgery I had an ON nerve block, I experience a bit a relief , but it only lasted a couple of hours. Prior to the surgery, the neurosurgeon, point blankly, told me that while he was almost certain that he could relieve the TN pain, there was a good likelyhood that I would still have the pain in the back of my head and we would have to deal with that at a later time. His intention when I went in for surgery was to see if he could access the nerve at the same time he did the surgery. Regretfully, he could not do it during the MVD surgery.

I will say that MVD surgery did help with the ON. My guess it that the surgery for the MVD, helped the general misfiring of all the nerves. Now in my recovery, while I’ve recently had some challenges with pain, the occipital nerve is trying to reconfigure itself too. The end result is that now in the healing period the ON is flaring up rather fiercely. Once again, the confusion persists. But like you, I’ve made the decision to enjoy the things I can, while I can. I work hard to find joy in the simplest of pleasures and all the other small amenities that live provides each day.

I’ll keep you updated on my progress with the ON. I am sending my prayers for relief and healing your way. Have a beautiful day. :slight_smile:
May peace, comfort, healing and tenderness surround you.
A

3

Thanks for your reply Aleshia, I’m so sorry I haven’t been back online much this past week. I don’t feel too good and it’s driving me nuts. I know exactly what you mean about when TN & ON are active together. It’s taken me a long time, but I finally realised that I must have had the ON for a long time now, but none of my Doctors got it, though I did tell them about the pain in the back of my head and neck especially with bad TN attacks. It drives you nuts, other people say if you can only get to sleep you’ll be ok, but if you cannot lay your head down to begin with without causing more pain, it’s not likely you’re going to get to sleep hey? That’s exactly my problem, and it does seem like lately, the only reason I’ve noticed it more as an independant issue is due to the ON acting up more on it’s own, sometimes crossing paths with the TN and this is when my life feels like it’s taken a journey I do not want to participate in any more. Only you and some few others here can appreciate the extent of what we deal with.

Saying all that, you can understand why my pain has been driving me to the Emergency room also a lot this year. TN on it’s own, ON on it’s own, they’re both miserable things - but add them together and it all becomes unbearable misery and pain, that a trip to the ER becomes the only option short of trying to knock myself unconcscious by slamming my head against a brick wall… If only my face wasn’t already in so much pain, I’d possibly contemplate that…

I’m disheartened. I’m trying to remain positive. My doctors, for all their reputed intelligence and empathy are almost impossible to reach, on phone or even talking with them in person, they may as well be a brick wall at times.

Why hasn’t my Doctor intimated that the pain in my neck and back of my head may be something else, for instance ON? Why, why, why is all I seem to have in me right now.

I’m feverish right now, so I’m losing the plot and will have to end this thread of comment I’m running on here. Chat with you all again later.

Cheers ~ Kerry xx