What caused your Neuralgia?

[Jaime_S]

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.!
:o
~Jaime~

[Koala77]

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.

[Kathi49]

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.

[charliebubs]

Hi there,

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

My ON was caused by a car accident and has gone undiagnosed and untreated for nearly 6 months :mad: 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. :eek: 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!!!! :D

[Kathi49]

Charlie,

Yes, I have had injections around the occipital nerves. They do NOT go into them. :eek::) 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.

[EE03]

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

[Kathi49]

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.

[Jaime_S]

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~

[charliebubs]

Charlie,

Yes, I have had injections around the occipital nerves. They do NOT go into them. :eek::) 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.

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 :confused: 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!?!?!? :rolleyes::confused:

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. :eek:

Charlie
x

[Kathi49]

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.

[EE03]

Kathi,

Thanks for the reply. I do have a herniated disc at C5-6, but the neurosurgeon wants to do a myelogram and nerve studies as he feels the herniation isn't significant enough to explain my symptoms. I thought the neck and head pain was from the disc problem and thats when he said no, that pain was from occipital neuralgia and that if he can't do anything for me, surgically, he intends to send me to his partner/neurologist.

So, here I stay in pain. Ellena

[charliebubs]

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.

Thanks so much Kathi. I'll try and find out exactly what it is he's going to do. I should probably have asked more questions at the time, but I guess I was a bit dumbfounded :o

[Kathi49]

Ellena,

I think everyone is different. So when I post about this horrid stuff, it is just based on my own personal experience. (Geesh, ON is horribly painful!) I feel for anyone that has to endure this and go through so much testing. Okay, what I wanted to say is that the C5/C6 USUALLY refers pain DOWNWARDS; shoulders, arms, and in my case it ONLY hurt in my thumbs. But my MRI showed a bad herniation. I have no clue as to why my arms never hurt because based on the dermatome charts they should have. So, I think people are just wired differently. I once asked my PM if I could still have headaches even though the C3/C4 was fused at that time. He basically said anything going on in the neck can refer pain upwards or downwards. And I am finding that to be true. But...just know too that I have osteophytes everywhere; not all were drilled out or taken care of; just the levels that were fused. So, I can still get those headaches they are just not as bad as they used to be and not as often. But when they do come on, I can now kick them out pretty quick. If not, it is facet injections. I had a bad spell last night as a matter of fact and did everything I could do at 1:00 am to stop it. And it finally went away.

Today I had facet injections at C2/C3 and then at L4/L5 and S1. Not pleasant at all but not horrendous either...just pretty badly inflamed facets. But I will tell you what the ride home was totally painfree! :) I KNOW it is because of the numbing medicine and it has started to wear off so I suspect there will be an increase in pain for a couple of days or so and then the steroid SHOULD start kicking in. If I get good relief from these, then he will go ahead and do the the Radiofrequency Ablation later on.

Hang in there Ellena; although it might seem like there is not much hope but there is! I went through the conservative bit for 3 years before anything was done. And that was very unusual. It is just that one NS refused to do anything. But my second NS sure did! And I think your doc sounds like he is on the right track. :) If you can't get any help then the very best recommendation I can make is to find a SPINAL pain management doctor. The one I have now was my saviour! :) And his background is in Internal Medicine, Anesthesiology. Pain Medicine and CERVICAL PATHOLOGY, meaning headaches coming from the cervical spine. I thank God I found him because there are not that many that have that background. I think I lucked out and only because a friend of mine told me about him 3 years ago or so. And he found the problem in ten seconds flat. Why then I ask myself, didn't the other group of PM's find this OVER THE COURSE OF 3 YEARS?! Ugh, that's another long story and I still get upset when I think about it. Anyway, hang in there...I know ON or Cervicogenic headaches are really difficult to diagnose. But once they are, you are well on your way towards relief of some kind. :)

Charliebubs,

I can imagine and even relate to feeling dumbfounded. When this all started 8years ago for me I didn't even know WHAT it was or WHY it was happening. Honestly, I thought I was having a stroke when it first happened. And...once I started in trying to find the cause I did NOT know the questions to ask until I started talking to other people going through the same thing. So, don't feel bad. It has taken many years and trials and tribulations and even fusions to get it all taken care of even though I have some residual pain. But I also know ON can be caused by other things...not necessarily the spine. I think that is why sometimes it is difficult for people to get diagnosed. As I said before, they started with trigger points around the greater and lesser occipital nerves. And during that whole time I had some really freaky pains, dizzy spells, nausea...you name it. I just didn't know where it was coming from. Anyway, if you can get the name of the procedure or what it is your doc is planning to do, please post back. The ONLY procedure I NEVER had done was a total destruction of the nerves in the back of the head. My original PM mentioned that procedure in the very beginning. I thought it was a cool idea UNTIL he said that I would never feel the back of my head again. And again, I said, well, so what...it is better than being in pain 24/7! But he said not really...alot of his patients hated the numbness and wished they could feel again. But this procedure he was speaking of was NOT the ablation I was speaking of. I wish I could remember the name of it but I opted out at that time since he had already said I would need a fusion someday. As it turned out, he was right.

[EE03]

Kathi,

Thank you for sharing and I understand that your speaking from your experience. I have a lot going on before all of this and I'm just pretty frustrated, obviously. I also have trigeminal neuralgia and I think I mistook a lot of the ON pain for that for a long time, and the disc issues which I spoke of previously. I was starting to see a connection and then the NS cinched it when he diagnosed it in no time. I'm hanging in here, but the ON pain is escalating quite a bit. So thanks again. I appreciate all the info I can gather at this point.

Ellena

[charliebubs]

Charliebubs,

I can imagine and even relate to feeling dumbfounded. When this all started 8years ago for me I didn't even know WHAT it was or WHY it was happening. Honestly, I thought I was having a stroke when it first happened. And...once I started in trying to find the cause I did NOT know the questions to ask until I started talking to other people going through the same thing. So, don't feel bad. It has taken many years and trials and tribulations and even fusions to get it all taken care of even though I have some residual pain. But I also know ON can be caused by other things...not necessarily the spine. I think that is why sometimes it is difficult for people to get diagnosed. As I said before, they started with trigger points around the greater and lesser occipital nerves. And during that whole time I had some really freaky pains, dizzy spells, nausea...you name it. I just didn't know where it was coming from. Anyway, if you can get the name of the procedure or what it is your doc is planning to do, please post back. The ONLY procedure I NEVER had done was a total destruction of the nerves in the back of the head. My original PM mentioned that procedure in the very beginning. I thought it was a cool idea UNTIL he said that I would never feel the back of my head again. And again, I said, well, so what...it is better than being in pain 24/7! But he said not really...alot of his patients hated the numbness and wished they could feel again. But this procedure he was speaking of was NOT the ablation I was speaking of. I wish I could remember the name of it but I opted out at that time since he had already said I would need a fusion someday. As it turned out, he was right.

Thanks again Kathi for your help and advice - it is an awful feeling when you have the initial shock and dumbfoundness until someone tells you what's going to happen :( and it's so nice to speak to others in the same position.

I've spoken to the hospital and the procedure I'm having Monday is BI-LATERAL SUB-OCCIPITAL NERVE ROOT BLOCK :confused::confused:

Does that mean anything to you?!?!?!

thanks,
Charlie :)

[Kathi49]

Yes Charlie it does.

In particular since he said nerve ROOT block. What it sounds like to me, and being that the suboccipital nerve comes out of the first cervical vertabrae, he is going to go in on either side of your neck (bilateral) and block the nerve root...that would be C1/C2. Don't worry he will NOT go INTO the nerve he will just block it. That just means they get real close and more or less bathe that area and calm those nerves down. And I can understand why he would give you some light anesthesia. You probably will experience some dizziness right after but that is to be expected since that level is high up there. I had something similar done yesterday only it was the facets at C2/C3. And, yep, I was a bit dizzy but it passes.

IF he had said trigger points or nerve blocks around the occipital nerves up and around your scalp, that would have been different. They still use a numbing med and steroid but the injections are in the scalp more or less. That's why I said they palpate the area for those.

Anyway, when you said "Root" then that tells me he is going exactly where it says...to the root of the problem and those particular nerves come out of that upper level and then for lack of a better description wind in and around the muscles of the scalp. Actually, it should work very well! And you should be sedated enough that you won't even care. :) Hang in there, I know the injections sound awful but the relief you get, and I just mean myself, is great!

[charliebubs]

Oh, Kathi, you're an angel! :D

Thank you so much for that detailed explanation. That really makes sense now. I can see why he's doing what he's doing.

It's really reassuring to hear you say that it should work too.........I'm so hoping and praying that it does :):) I'll keep you posted!!

Thanks so much :hug:

[Jaime_S]

Charliebubs, I hope all goes well and the nerve blocks work for you. :)
I'm no good at explaining how they are done, I just know that they work for me!:o
~Jaime~

[Kathi49]

Charliebubs,

You are welcome. And I sure hope I am right in what I told you. So again, I was referencing the part where you said nerve ROOT. I am almost positive that is what your doc is intending to. And only because trigger points in the scalp or around the occipital nerves do not require sedation. With other types of blocks sedation is usually available. Anymore, I don't ask for sedation I just take a Valium or two before the injections and just because I am anxious. And I don't always take a Valium every time either. It just depends on how many he is going to do. This past visit there was 5 areas he was injecting so yep, that made me anxious. :) Next month he will be doing a Selective Nerve Root injection at the C7.

In any case and as Jaime said, they have worked well for her and myself! In some instances they don't help. But from what I gather or have learned rather, if they don't help, that is only because the nerve generator was not found. I have had that happen too...in the beginning of all of this. The docs were injecting every level but for some reason didn't hit on or missed the target for the C3/C4. When my newer and current PM saw my MRI films he told me right off the bat that the C3/C4 was the culprit; did a couple of injections and I can't remember the exact types since it was back in 2003. But I had instant pain relief for the first time in 3 years. Of course it came back and then he did another set. But you have to know the C3/C4 was really, really bad...so fusion it was in 2004. And don't get me wrong, I am not saying you need a fusion LOL! It is very possible all you really need is just to get the nerves calmed down which is what your doctor's objective is.

I will keep my fingers crossed for you. And I bet you find you will get some good relief. Just the numbing agent itself is heavenly! :) I can't tell you how many times I have had these only to ride home with blessed relief. But the numbing agent wears off after a few hours. You MIGHT have some increased pain for a couple of days but don't fret about that. It is just that the nerves sometimes get mad. But the steroid itself should kick in about a week or so. The doc can explain that all to you. But hang in there and don't fret and don't think it isn't working if this happens. I have done that too...called in to tell them the block didn't work. And how wrong I was LOL! I just needed to give it more time.

I wish you the best and don't fret too much. These are really not that bad at all...especially with some anesthesia. Honestly, you won't really care what they do and I know that sounds odd. But it is the truth. :)

[leftygolf05]

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
I had nerve blocks, facet injections, cortisone and lanicane, and it did not work for me. I have had "ON" for 15 years. i am now trying Botox and hoping and praying that my headaches go away. I will let you know how it goes.

Richie

[Kathi49]

Richie,

I am so sorry the injections didn't help you. I think that is what is so weird about having ON. The docs originally diagnosed me with ON but when they saw the cervical spine MRI they changed that diagnosis to Cervicogenic headaches with variant migraines. I feel blessed in a sense because the culprit was eventually found but it took a good 3 years. But I also know ON can be muscular in nature and all kinds of other things. I hope the Botox works for you as it did my friend. Let us know if it helps.

[EE03]

I had nerve blocks, facet injections, cortisone and lanicane, and it did not work for me. I have had "ON" for 15 years. i am now trying Botox and hoping and praying that my headaches go away. I will let you know how it goes.

Richie

I'll be watching for your posts. On my front, the insurance company approved the EMG and Myelogram so next week will be EMG and myelogram will follow on the next Monday. I hope the doc gets me in soon after that.

Ellena

[Nik-key]

My ON is from failed brain surgeries for the TN. The scar tissue has built up and is now causing bilateral ON :eek:

[Jaime_S]

My ON is from failed brain surgeries for the TN. The scar tissue has built up and is now causing bilateral ON :eek:

Just what you don't need...more nerve pain than you had before!:eek:
My ON is from successful brain surgery to remove a cyst, but where the surgeon went in through my neck, was too close to the left occ. nerves!:eek:
:o
~Jaime~

[EE03]

Well, I'm guessing mine is from a car accident (whiplash).

Ellena

[Nik-key]

Just what you don't need...more nerve pain than you had before!:eek:
My ON is from successful brain surgery to remove a cyst, but where the surgeon went in through my neck, was too close to the left occ. nerves!:eek:
:o
~Jaime~

Sorry to hear that Jamie. I had the MVD - they also enter through the skull at the back of the skull. I believe that is the reason the right side is so bad. When I use to have the nerve blocks I always needed an extra one right where the "plug" is. Gee thanks guys :rolleyes: LOL

[Nik-key]

Sorry to hear that Ellena, no fun at all :(

[EE03]

Thanks Nikkey. I keep reminding myself that it could always be worse.

Ellena

[leftygolf05]

I had the Botox injections, but they did not work.

I am going back next week to see what else can be done

[jane d mccartney]

Sorry to hear that Jamie. I had the MVD - they also enter through the skull at the back of the skull. I believe that is the reason the right side is so bad. When I use to have the nerve blocks I always needed an extra one right where the "plug" is. Gee thanks guys :rolleyes: LOL



Hi Nik-key
thanks for your info on the patches , perhaps your hair is shorter than mine but will give them a go.
my o.c is being caused by 2 brain tumours inoperable, benign but causing me a lot of symptoms. jane mCc

[charliebubs]

Well, I'm guessing mine is from a car accident (whiplash).

Ellena

Thanks Nikkey. I keep reminding myself that it could always be worse.

Ellena

I'm the same - my ON was caused by a car accident/whiplash - but the other lady in the crash came off much worse and I just keep reminding myself of that.

I've had a horrible few months - but I'm sure she's had much worse :(

[EE03]

Yes, things can always be worse. I read your other post regarding the nerve blocks - I'm happy to hear you are getting some relief. I'm waiting for insurance to approve pain management for mine so relief is still beyond my grasp.
Ellena

[charliebubs]

Yes, things can always be worse. I read your other post regarding the nerve blocks - I'm happy to hear you are getting some relief. I'm waiting for insurance to approve pain management for mine so relief is still beyond my grasp.
Ellena

I hope you find some relief soon Ellena.

Hugs :hug:

[EE03]

I hope you find some relief soon Ellena.

Hugs :hug:

Thanks Charliebubs. I called the NS's office today and will call again tomorrow. Its crazy that I need to wait this long.

Ellena

[charliebubs]

Thanks Charliebubs. I called the NS's office today and will call again tomorrow. Its crazy that I need to wait this long.

Ellena

Did you get anywhere with them yet, Ellena?

[EE03]

Thanks for asking, but unfortunately, the doc they were referring me to doesn't believe he can do anything for me so my chart was placed on the NS's desk and his assistant is waiting for further direction from him. I gave her a name of a doc to suggest to him so I'll call there tomorrow and see what he has decided. And, then they still need to get insurance approval and we are getting ready to go away for two weeks. I'm still dealing with pain and doing what I can, but its getting worse and lying down is only possible now without a pillow and my eyes are really giving me fits. I'm really getting discouraged here and starting to think I'll never get any relief (sorry I'm just feeling sorry right now cause I've got enough pain to deal with without this). I woke up with muscle spasms at 4:00 this morning in my neck and the doc is thinking that the muscles are so aggravated in my neck from the bulging disc that its inflaming the nerve.

I do hope your still doing well and I really appreciate you asking. Sorry I'm still so bummed out.

Take care, Ellena

[Macophile]

I injured my occipital nerve about 5-6 years ago. I'll be honest. I walked into a Stop sign. Yes, you read that right. The sign was placed too low, and I was looking to the side and bang. the side/back of my hed got smashed right into the edge of the sign. I still. suffer with the pain in the nerve, and going down my neck from it. The solution my Migrain Dr. Had was novicaine patches. Which worked.... at least at the time of the injury. However, as the location is one that is covered with hair, and I am not willing to shave my head, I do not use them very much anymore. (They were a bit messy, and liable to fall off) Now I just deal with it.

[GaryG]

My ON started when I was in my middle 20's (I am now in my late 50's).
I was adding shelving to my storeroom when a can of paint fell from a top shelf and struck me on the left side of my neck with enough force to almost knock me out. After that I started having "sinus headaches" that always affected my left eye and sinus area around the eye. I could always tell when the pain was about to start when my left nostril would stop up. The attacks were infrequent during the early days but as time went on I started with the severe pain in the back of my head (left side) along with the "sinus headache". The attacks slowly became more frequent (almost daily) and after 2 GP's, 2 Neurologists, Chiropractic and Acupuncture treatments and every medication known to man, I had my first lidocaine/corticosteroid injection just recently. So far it's been a miracle. I went a whole week with taking even one pain pill. I will go for more injections when this wears off and I would like to know that some procedure exists that would stop the pain forever. I joined the forum for more information on nerve blocks, nerve ablation,Botox injections and any other options I have to stop this pain forever. Can anyone tell me more?

[Nik-key]

Hi Nik-key
thanks for your info on the patches , perhaps your hair is shorter than mine but will give them a go.
my o.c is being caused by 2 brain tumours inoperable, benign but causing me a lot of symptoms. jane mCc

Actually my hair is really really long.
What I do is cut the patch in very thin strips,
part the hair and place them. Its a bit of work, but it is worth it!

[Macophile]

Actually my hair is really really long.
What I do is cut the patch in very thin strips,
part the hair and place them. Its a bit of work, but it is worth it!

Ok, now this is a tip I can use! :D

They had a huge tendency to fall off my head... I ended up holding them in place by wrapping an Ace-bandage around by head (under the pigtails I had already put my hair in trying to get it out of the way).

Needless to say, I looked ridiculous. I could only use them when I was at home.
Alone.
Completely Alone. ;)
I'll have to try out your tip. Thank you so much. :)

[Nik-key]

LOL I was trying to picture you in pigtails and ace bandage:D The things we do for relief! If you cut it into small enough pieces it should stay on your scalp. I just hold there for a little bit to make sure it sticks good.
I wear them on my face as well for TN, so I understand what you mean about not wanting to go out in public ;)
Take care and let me know how it works for you~Nikki

[jane d mccartney]

:confused:keep putting these srips on my face & they keep falling off
havn`t got time for head, with holding ones on my face, think i make pain worse with pressing these:( things in.:(
jane

[Nik-key]

sorry to hear that jane! The ones I get are very sticky and last for hours. Perhaps you could talk to your doctor about getting better ones? Or i know there is a special medical glue my sister uses, maybe that could work?

[Melina]

Wow there are so many storys here! mine is kind of a long one so here goes! i woke up about 2 and a half years ago with Bell's Palsy! (facial Paralysis on left side) and from that i have ended up with endless problems! i have got bilateral trigeminal neuralgia and occiptical neuralgia as a result of bell's i also have hemi facial spasms, hypercausis of the left ear (sensitive to all noise) and tmj as well, the bell's has cleared up i still have a droopy eye and chin when i get tired but otherwise i look normal! i am taking tegretol and having accupuncture for the pain, which are sort of working unfortunately i cant have any botox or surgery because otherwise i could get a paralysed face again it is too risky!

Low pain wishes to everyone!!!!
it was really interesting finding out how many different ways people have ended up with this horrific pain!

Mel :grouphug::grouphug::grouphug:

[jane d mccartney]

Hi Nic Key
done it !! it`s been the cream on my face so now i only cream 1/2 face
& they are sticking great. sorry won`t need your sisters glue.
jane :)

[kyetzbac]

I'm new here. I'm so glad to find other people that know what I'm talking about on this site. I try to tell my friends and co-workers that O.N. feels like being shot in the back of the head or else it's electrical zaps zapping all day in my head. And they look at me like I'm crazy. My O.N. was caused when I went on vacation to Yellowstone and I wore a baseball hat really, really, really tight for 10 days straight. I didn't feel like dealing with my thick hair every day, so I would put it up in a ball cap. My neurologist told me that I upset the Occipital nerves by doing this and I've been in pain for the last year. I'm thinking about accupuncture, but need to do more research on it. I'm getting really tired of going to the ER for the pain. The only thing that seems to help is muscle relaxers (Flexiril) and going on 3-4 mile walks in the evening. And I do not wear hats anymore!!!! I can not sleep on my back (with pressure on the back of my head). I can't wear turtle necks, heavy coats, nothing that will put pressure on the base of my skull or my neck.

[Jaime_S]

Yes, it is interesting reading all these stories. O.N. and other neuralgia pain can be caused by so many things and happen in so many ways...
:hug:
~Jaime~

[CC67]

Interesting, the baseball cap story. Because the cause of my ON (I think thats what it is) was due to me and a screen door colliding in some fashion. I hit it on the left side of my face right at the temple where the baseball cap lower part is. Had tingling and zapping for a while its lesser now due to the Neurontin. Feels like a spider was crawling around in side my scalp for a while there and like a sunburn all over my head, thats how I discribe it.
Some nites I sleep fine but some nights my head throbs. But seems like the tingling sensation is going away.

[sparky08]

I had jaw surgery for severe TMJ. The surgeon feels that the TMJ was how I compensated for my facial structure. He believes everything is a result of a head injury probably in childhood. At any rate, I had bilateral dischectomies of my TMJ with Fat Graft. Came through surgery with RSD and what later became Occipital Neualgia. I am on Lyrica, Clexa and Ultram for nerve pain. Some of which has helped. The RSD has calmed down after 5 Stellate Ganglion nerve blocks. The ON, however, is never ending. I have had trigger point injections in my head neck and upper trap, sometimes they help, sometimes they don't. I've moved onto Epidural injections in c2/c3. The last round last week did not work at all and I went in yesterday (friday) at about a 9 pain level for the second round. If this round doesn't work, they said they would not do a third round. I'm wondering if anyone knows what's possibly next if this doesn't work? I'm scared to death that the steroids won't kick in. Right now the anesethtic has mostly worn off and my left side base of neck is killing me. I know I still have a few more days to wait for the steroids kick in...but I am out of patience with this whole thing. Can anyone tell me the next course of treatment beyond epidural injections? Thanks so much.
Geri

[snappy10]

Charlie,

Yes, I have had injections around the occipital nerves. They do NOT go into them. :eek::) 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.


the injection for the nerve blocks are a piece of cake, they use so much of the paign killer first you cannot feel them. I have had 35 of them and they have helped me. but they only last for 24 to 36 hours. but great relief for the the time they work. snappy10 good luck and keep posting... there is strength in numbers

[Shelbyrhay]

wow, this was extremely enlightening. I got my O.N. from a root canal. It was an emergency one that was unexpected that lasted 3.5 hours and then root was left in it. They gave me no pain medication what so ever because they kept telling me that I had no root left. The new TMJ specialist said that I probably contorted my neck in pain in such a way that I've messed up my muscles. The neurologist agrees and says that my muscles are pressing on the nerve. This makes my nerves hurt and then my muscles react to that. So basically an endless cycle. My problem is that it feels like someone just cut off the back of my scalp. Also my neck gets super stiff and my right eye is always in pain inside of my head.
I had my first steriod shots yesterday and now my top of my head hurts and the injection sites hurt. As well, my facial skin feels like it is on fire. Bad reaction I suppose.

[litlefawn3]

Hello, im a newbee here but not with t.n. And m.s.. I was wondering if you felt alot of pressure behind your eye along with the pain? I never had eye pain before now it's been constant for the past 5 month, i do have severe dry eyes; although here recently it's eased up somewhat. Is this relate d to the m.s. Or the t.n.?
And are there any eye drops for this kind of pain?
Thanks,
litlefawn3

[BethD.]

I too have ON. Mine came with a whiplash injury and cervical fusion of 3 levels. After the fusion, my ON headaches have been constant on my left side of my neck....relentless....never ceasing. Currently, I numb my pain mostly with morphine. I will be trying a Occipital nerve block in 2 weeks. Have you had any procedures? I have had epidurals, trigger pt. facet joint inj. to no avail....I only numb my pain...and thank God the drugs still work. I would love to chat someday....
God bless you. I am 54. How old are you? I have had Headaches since my daughter was born,...18 yrs. but severe for 7 yrs.

Beth

[Jaime_S]

I too have ON. Mine came with a whiplash injury and cervical fusion of 3 levels. After the fusion, my ON headaches have been constant on my left side of my neck....relentless....never ceasing. Currently, I numb my pain mostly with morphine. I will be trying a Occipital nerve block in 2 weeks. Have you had any procedures? I have had epidurals, trigger pt. facet joint inj. to no avail....I only numb my pain...and thank God the drugs still work. I would love to chat someday....
God bless you. I am 54. How old are you? I have had Headaches since my daughter was born,...18 yrs. but severe for 7 yrs.

Beth


Hi Beth,
My ON pain is on the left side also. I have been getting the Occipital Nerve blocks for the last 18 months, and they work well for me. I haven't had any other procedures done yet, just the nerve blocks and a few different meds. I am 43, and have had ON pain come and go over the 12 years since I had neurosurgery to remove a cyst from my brain.
~Jaime~

[OhSheila]

I have trigeminal neuralgia and my husband has glossopharyngeal neuralgia. What are the odds - lol.

I always tell people it's that darn transformer box in our backyard causing the neurological problems, haha. I don't believe any one culprit brought this on, nor do I believe any series of events. Neither one of us has had any car accidents or anything traumatic etc. Both of our cases were clearly spontaneous. However, in my research of our small neighborhood I have found 6 other trigeminal (that I know personally) within a 5 mile radius?????? Coincidence??

My husband was much worse off than me. I say "was" because he had microvascular decompression surgery in 2006. Dr. Jho in Pittsburgh is a miracle worker!!! My husband has his life back!!!! Since his surgery he hasn't taken one tegretol and hasn't had one attack, not one!! My husband would be on the floor in pain sometimes 20-30 times a day. Our children finally know their father.

My trigeminal isn't quite as severe. I have been diagnosed with migraine headaches, cluster headaches, and every kind of headache known to man. It took the endodontist to finally figure out that it was trigeminal. Neurontin works well for me, for now. If this does progress past the drugs I will definitely contact Dr. Jho!!

[Peter B]

The new TMJ specialist said that I probably contorted my neck in pain in such a way that I've messed up my muscles. The neurologist agrees and says that my muscles are pressing on the nerve. This makes my nerves hurt and then my muscles react to that. So basically an endless cycle.
That is a bit interesting to me, as it appears that my ON is caused by tightness in that muscle that runs down the neck and into the shoulder.
Always the left side. I call it the 'beartrap' as it bites and won't let go.
My new pain dr has referred me to a clinical physio who is now working out for me a long term home exercise/stretching regimen, which should result in getting some muscle tone back and breaking that cycle. He looks at the psychological, physical and pain as all being linked.
Some deep tissue massage also.
it should then help my mental state as I'm on the edge of depression from it all.
I actually do feel better just from having discussed it yesterday, and being given a plan to get me out of the pain cycle.
This is the first time that anyone has bothered to look deeper into my chronic pain and look for the cause, rather than just treat it.

[Peter B]

Saw my GP today and he said that they don't know the cause of ON, or how to treat it. I asked about nerve ablation and he said it's OK if they can find the nerve, but they tend to do a wider area so you have a numb patch.
He said regular pain meds don't work-as I've found out.
He said that epliepsy meds are good but he can't prescribe them under the health rebate scheme.
He gace me a strip of Gabapentin (Neurontin) to try. Just take as needed.
Had the ON all day and night yesterday, still there today but easing. Feel wornout and irritable.
One good thing-you don't think about getting depressed as you can't even finish a thought before it fizzles out.
Too sore to think!

[EE03]

Peter, welcome although I'm sorry you're here. You would probably do well to see a neurologist or a pain management doctor. I'm treating with a pain management doctor, but I've not had an ablation done to the ON, only direct blocks and they were heaven while they lasted. This condition $@&*s. When its real bad, I don't get a break at all from the pain. I'm trying to avoid anticonvulsants, but I'm not sure I'll be able to indefinately. Hang in there!

[Peter B]

HiEEO3. Thanks.
I am with a new pain doc, who examined my neck and found a lot of very tight and sore muscles, so he sent me to a clinical physiologist.
Saw him and was quite impressed by his interpretation of the effects chronic pain have on the body and the mind. He is writing up an exercise/ stretching routine that I will learn and do at home. These may help with the pain-I do get a lot of tense muscle pain, and my muscles are wasting away from not doing anything, so I am sure that it will be of lasting benefit.
Not sure if it will help with the ON, as muscle relaxants didn't make any difference this time.
I think now that most of my neck pain is in fact ON, and that the shoulder muscle pain is related, a side effect.
It's funny how you just can't put 2 and 2 together and get 4 when you aren't able to think properly.
Also, this new pain dr is the first one to actually examine me. The others just asked me to describe my pain, and then started to prescribe treatment.
If I can't wait 3-4 weeks to get into the exercise thing, I may have to get a nerve block or ablation.
Can anyone give me some advice on which to suggest to the DR?

[EE03]

Dignostic blocks are usually done before ablation is. It confirms that the pain is actually coming from where they think it is. If they use steroids, they can calm the inflamation some. After I had my second direct block to the occipital nerve, I did get some extended relief from the ON. I've been told that pulsed frequency is the way to go with ablation, but insurance in the States is an issue. Ask your doctor about it in your country and given your health care is national, I think. I was told the muscles are the issue with mine, but I've had RFA to the upper cervicals and it still hasn't alleviated the ON. I'm sure it is adding to it, but they don't like to do RFA to C2 and the base of the skull. I guess its too easy to get unwanted results that high up. So, thats all I know so far, which really isn't much. Good luck with your treatment and post how it all goes.