What was/is the cause of your nerve pain? That’s if you know the cause... Whether it be Occipital Neuralgia, or any other neuralgia, I was wondering what happened in the first place, that gave you that horrible nerve pain?
In my case, I have O.N., which my NS says was probably caused by the surgery I had to fenestrate an Arachnoid Cyst. They had to go in through the back of my neck, past the spine. (and, in doing so, damaged the left Occ. Nerves!).
Anyway, the nerve pain came and went over the last 11 years, (I had a few good years with very little pain) but it returned with a vengeance 2 years ago. It seemed strange that it would get worse after all this time, but I discovered I had developed osteo-arthritis in my neck (and in every other part of the body as well!) in recent years, and now that seems to be contributing to the nerve pain. So, I guess you could say that I have 2 probable causes of my O.N.!

~Jaime~

For me it's been repeated "attacks" of Optic Neuritis. That's another different ON.

As an MSer, Optic Neuritis is a common symptom and I've had maybe 7 or 8 of these episodes since my diagnosis. For me the Optic Neuritis has been very painful each time, and it seems the last one has never left.

My last bout was in January last year and the pain has never left in that eye. I have to assume that the myelin around that particualr Optic Nerve is Kaput!

I take a combination of medications to help control the pain and although it never goes away, some days the pain is better controlled than others.

Well, mine started right after a hysterectomy and once I was off all pain meds. Originally I thought it was from the lack of hormones..but it wasn't. It was about a week after being off the pain meds that I grabbed my head and screamed. To make a long story short the docs first diagnosed it as ON and then that changed almost immediately to cervicogenic headaches. BECAUSE...the NS ordered an MRI and saw how badly arthritic my neck was PLUS a piece of old bone that had busted off...probably years ago...when I was 12 from a go cart accident. But what they said aggravated all of it was from being intubated and having my neck hyperextended during the hysterectomy surgery. Anyway, that is what TRIGGERED it and for the next 3 years it was he@@! So, this all eventually led to a fusion of the C3/C4 (it was in bad, bad shape) and gone were the headaches. However, I can still get them from time to time because there are issues at every level of my cervical spine. My PM had to do facet injections at the C2/C3 this past November and that still is giving me great relief. I will say when they do hit, I can usually kick them out with ice or heat. There is no more running to the ER for shots of Toradol and Phenergan. So, all in all I think the nerve blocks and the fusions I have had have helped to obliterate some of this. It can get bad sometimes but at least it is not an every day thing anymore. If it gets bad and stays that way, I usually see my PM for an injection which normally lasts for quite awhile.

Hi there,

Firstly - I'm so relieved to have found this forum and people with the same problem and experience as me

My ON was caused by a car accident and has gone undiagnosed and untreated for nearly 6 months until now!!

My doctor said that I just had basic whiplash and sent me on my way with Diazipam and Coedine to start with. When they didn't help (apart from to turn me into a zombie!) he referred me for physiotherapy. After 11 sessions of physio I am still no better and finally got referred to an orthopedic specialist.

He has been brilliant!! He sent me for an MRI scan, said that he knew exactly what was wrong and how to treat it.

I'm booked in a week today to have a general anaesthetic and then steroid injections into the occipital nerves. Although I'm scared about this a little, it will be worth it if it gets rid of the constant headaches and migraines that I've been suffering with.

Are the injections that I'm having the same thing as the nerve blockers that I keep reading about!?!

Has anyone had them? Did they work? What were the side effects?

Thanks in advance!!!!

Charlie,

Yes, I have had injections around the occipital nerves. They do NOT go into them. What they do is palpate the area near the nerves and then sort of flood the area with numbing medicine and a steroid. I just term them trigger point injections. The other types of injections I was talking about are actual nerve blocks in the spine...facets, selective nerve root injections and ESI's. Although my own PM will NOT do ESI's in the neck.

I didn't have any side effects from any injections other than maybe a tiny rise in blood sugar and a little bit of jitteriness. So, don't be afraid and try them. I have known people to get relief from the trigger point types. I just didn't because the pain generator was from my cervical spine. However, even injections into the cervical spine helped a GREAT deal! I have had to have two fusions though but that's beside the point really.

If you are anxious about the injections, ask the doc if you can take a Valium before your appointment for the shots. They will let you do that...they just don't want you to take pain killers ahead of time.

I've recently learned that I also have occipital neuralgia and I'm following along with this thread. I'm stuck in a holding pattern with it due to the insurance taking thier sweet time about approving the additional tests the neuro surgeon wants to run. So, I get to sit here and deal with the pain since my current meds for my other conditions don't fully cover it. Sorry to whine here, I'm just pretty frustrated having to always rely on other people and the pain is doing me in on all fronts.

Anyway, I've read that nerve blocks are often used as a diagnostic tool for occipital neuralgia. Does anyone have experience with this? I know they use them to control pain also, but firstly for diagnosing. Or am I totally off base?

Ellena

They are one in the same; diagnostic as well as therapeutic. But just remember if they don't work, the docs will have to look further. I had them in my scalp at first; greater and lesser occipital nerves. They did help for awhile but not long lasting. But again, my issues were from the cervical spine itself. And you don't get these all the time as say you would in taking meds. The docs really don't like to give a lot of injections as in managing pain. I just mean you can't keep going back and having them done over and over and over again. Eventually, they will find a different procedure. For instance...I will be getting a C2/C3 facet injection tomorrow. This will be my second one in 8 months. After that and if this gives me good pain control, the doc will do a radiofrequency ablation. But everyone is different with different reasons for ON. I know of some who have opted for a stimulator. So, I think it all just depends on what is going on. And I want to add I feel for anyone that has this going on. It has to be the absolute worst pain I have ever had in my life. I have spinal issues galore but nothing has topped the ON...not yet anyway. I wish you all the best of luck and success in getting some relief from it.

I have read that the nerve blocks have been used for diagnostic purposes too. But my O.N. wasn't diagnosed that way, but I wish it had been though, because the nerve blocks work well for me! It seems I had to try nearly every med available first, before I could try the nerve block!
Oh well, at least the nerve blocks work for me, they don't work for everyone...

~Jaime~

Hi Kathi,

Thanks for your reply. I'm a bit confused though as I'm sure the surgeon said he would be injecting into the nerves Also, you say about asking for valium before my appointment - but I'm having a general anaesthetic so I'll be asleep when he does it anyway. Maybe it's not the same thing that I'm having?!??! Or maybe it's just done differently in the UK!?!?!?

Anyway - thanks for your responses and I'm keeping everything crossed that I do get some relief from these injections.

The surgeon did say that if I don't get relief the first time he would do it again about 6 weeks later.

Charlie
x

Charliebubs,

I am unsure unless he is planning on destroying the nerves. That's a whole different procedure. I was thinking you were just going to get them blocked. When they block them they DO not go INTO them. I bet you are having a different procedure. Can you possibly find out the exact name and then post back? I can answer you better because a block is different from say a Rhizotomy. In any case, they sometimes will give you a general anesthesia just to block the nerves too...something like Versed. But again, if you can find out exactly what the procedure is then maybe I can help you with it. I have just never had the nerves destroyed...just ablated which is different as well and in my lumbar; called a Radiofrequency Ablation.