Occipital Neuralgia and other Cranial Neuralgias For discussion of Occipital Neuralgia, Glossopharyngeal Neuralgia, Nervus Intermedius (or Geniculate Neuralgia), and Vegal and Superior Laryngeal Neuralgia. (Trigeminal Neuralgia has its forum below.)


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Old 12-01-2008, 04:02 PM #11
jane d mccartney jane d mccartney is offline
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glad the blocks are helping you jaime, do you have facial pain?
i`m having my 15th nerve block in the morning, they certainly help the back of my head. but i have this awful trigeminiel pain in my face the nerve blocks don`t touch this. I am on so many drugs don`t think they can give me any more. how do you feel after for 24 hrs after your block & how long does your head remain numb[ excuse the pun]
love sophia
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Old 12-01-2008, 07:33 PM #12
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So far, the block is helping. I don't have facial pain as in TN, but I do have some jaw pain. But I did have some dental work done last week, that took a while, and my jaw is still hurting from that.
With the nerve block, I feel numbness for 2-3 hours, then pain for the next 2 nights, when the numbness wears off, but the steroids usually kick in by the 3rd-4th day, after the 5th day, I usually feel good, with very little pain. My Neurologist believes my neuralgia may eventually go away, as it has lessened a bit over the last 2 years. But, it has always done that...it comes, then goes, then comes again! I'd like to believe him, but I don't think so! lol

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glad the blocks are helping you jaime, do you have facial pain?
i`m having my 15th nerve block in the morning, they certainly help the back of my head. but i have this awful trigeminiel pain in my face the nerve blocks don`t touch this. I am on so many drugs don`t think they can give me any more. how do you feel after for 24 hrs after your block & how long does your head remain numb[ excuse the pun]
love sophia
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Old 12-02-2008, 02:26 AM #13
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SO glad you are feeling better. THose nerve blocks certainly help, don't they? I had surgery 2 weeks ago now and it looks like it didn't work at all. I ended up having to see my GP on Friday last week because I was in so much pain I was crying and feeling really queasy. I could not get in to see my pain specialist-she was way over booked, so I was screwed.

My GP is great and while she didn't quite know what to do for me, she decided the best she could come up with was to put me on a high dose of oral steroids (prednisone) for 5 days and see if that made some of the swelling around the nerves go down and help the pain some. It seems to have, though I still have the ON headache going on. I am still taking hydromorphone and then sleeping pills because the steroids make me wired.

Supposed to see the pain specialist on Thursday and I imagine get another nerve block. I will probably be back to once a week injections again. Whoopie!

Where's our magic wands when we need them eh?

Anyway, sending you lots of understanding about how cruddy this is to deal with and again, so glad youw ere able to get your shot again.
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Old 01-01-2009, 08:41 PM #14
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Well, I had been 5 weeks pain free...then 2 days before christmas, I had this throbbing pain in the upper neck and the area where the block was done. I'm not sure if it is just nerve pain, only because it has never come on so quickly before, usually the block wears off gradually and the pain returns gradually...I think it is mostly muscle spasms in the neck! I still have this pain now, nearly 2 weeks later! Sitting here with my new laptop just makes it worse! lol Looks like it will be a trip to the Doctor soon...hopefully he's there next week!
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Old 01-02-2009, 07:39 AM #15
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Jaime,

I am sorry to hear you are still having pain.

I want to ask you. What levels did the CT scan show the OA at it worst? I know you said OA is at every level. That tells me that it is probably facets and/or foraminal narrowing maybe Stenosis? And was the injection a trigger point injection so to speak? And do you have a copy of your CT report? I would try, if warranted, the facet injections based on what you have said. And I know those muscle spasms can be bad! Case in point...last spring it was everything I could do to get the spasms to stop and the sternocleidomastoid muscles were involved. I insisted my PM try trigger point injections at first. But at the time he said it was more than likely the facets. He went ahead and did the trigger points but the relief didn't last long at all. Dummy me! I was back in his office in no time flat and he went ahead and did the C2/C3 level. Well, he was right...I have had relief now for many months.

Over the years he has said many things but one thing he always told me and based on the way my neck is, that the pain would always come back and it did. The other thing was (and he has two fusions; myself as well) that he could never believe how those spasms just come on out of the blue. He now understands because it happens to him. And he kind of laughed at the time...said he has preached for years to stretch. Well, now he knows that sometimes stretching just doesn't get it. In any case, the way it was explained to me is that when the nerves are acting up, the muscles will spasm.

I hope you can get back in to the doc and get some relief. And watch the laptop. I know they are great for sitting and making life a bit easier. But if your head is in a forward posture or you are looking down, it can reallly aggravate things. And no offense intended at all. I talk to many spinal disorders folks who use nothing but laptops. I think I am the only one that uses a desktop instead. But unless my screen is right in front of me (ergonomically correct in other words) and my arms are resting, then I can't use a PC at all. A soft collar might help too. I put mine on when I feel spasms come on and it does help a bit; not a cure all...but reminds me in a way to keep my posture where it should be.
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Old 01-02-2009, 09:03 AM #16
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Kathi,
I'm so glad you posted your experience. The muscle spasms I had came out of the blue while I was asleep and they were associated with the bulging disc I have at C5-6. I totally understand what you say about no amount of stretching helps as I stretched plenty before, and tried to after, without any success. Anyway, your description just validated my experience. ellena
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Old 01-02-2009, 10:28 PM #17
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Hi Kathi,

Yes, I have a copy of my CT report, and I showed it to my Neurologist last time I saw him. All he said was... "It's not bad really, I've seen worse spines than yours, and as recently as this morning"!
The summary of the report said..."Minor disc bulges are as described, without significant canal stenosis or foraminal narrowing".
I don't think it's too bad, either, there are a lot worse than me out there! The only injections I've had are for the occipital nerves, never had any facet joint injections. I just have pain down one side, and my neck muscles are always tight. I usually get massage therapy every 2 weeks, which usually relieves the tension and pain, but my massage therapist is away at the moment, and I can't get to see him until late next week. I've often had muscle tightness and spasms in the neck, but they usually only last a day or 2. Bu this has lasted nearly 2 weeks!
As for the laptop, I never have it on my lap (no room on my lap anyway! lol) I use it on a small ajustable table, but can't quite get it as high as I'd like, so it's sitting on a book as well now! lol I still use my old desktop PC, (I'm using it now!). But I wanted something portable so I don't have to be stuck in this small stuffy room all the time! I used the laptop over christmas, as I had my brother sleeping in the room where my PC is! Anyway, I'll work it all out eventually! lol I'm limiting my time on any computer right now...gotta get a life! lol

~Jaime~

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Jaime,

I am sorry to hear you are still having pain.

I want to ask you. What levels did the CT scan show the OA at it worst? I know you said OA is at every level. That tells me that it is probably facets and/or foraminal narrowing maybe Stenosis? And was the injection a trigger point injection so to speak? And do you have a copy of your CT report? I would try, if warranted, the facet injections based on what you have said. And I know those muscle spasms can be bad! Case in point...last spring it was everything I could do to get the spasms to stop and the sternocleidomastoid muscles were involved. I insisted my PM try trigger point injections at first. But at the time he said it was more than likely the facets. He went ahead and did the trigger points but the relief didn't last long at all. Dummy me! I was back in his office in no time flat and he went ahead and did the C2/C3 level. Well, he was right...I have had relief now for many months.

Over the years he has said many things but one thing he always told me and based on the way my neck is, that the pain would always come back and it did. The other thing was (and he has two fusions; myself as well) that he could never believe how those spasms just come on out of the blue. He now understands because it happens to him. And he kind of laughed at the time...said he has preached for years to stretch. Well, now he knows that sometimes stretching just doesn't get it. In any case, the way it was explained to me is that when the nerves are acting up, the muscles will spasm.

I hope you can get back in to the doc and get some relief. And watch the laptop. I know they are great for sitting and making life a bit easier. But if your head is in a forward posture or you are looking down, it can reallly aggravate things. And no offense intended at all. I talk to many spinal disorders folks who use nothing but laptops. I think I am the only one that uses a desktop instead. But unless my screen is right in front of me (ergonomically correct in other words) and my arms are resting, then I can't use a PC at all. A soft collar might help too. I put mine on when I feel spasms come on and it does help a bit; not a cure all...but reminds me in a way to keep my posture where it should be.
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Old 03-09-2009, 12:50 AM #18
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OK, I'm off to my neurologist next week. I'm just supposed to be going to have the NCS for my carpal tunnel, to see if there are any changes (I think it's worse, anyway!). But...I think it's time for another nerve block! I haven't been sleeping, so I upped the Amitriptyline, and it's helping me get some sleep, at least!
~Jaime~
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Old 03-19-2009, 07:40 PM #19
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Well, I had another block for my ON, and I'm feeling a lot better already. But, the carpal tunnel has got worse, and it surprised my neurologist (who did the tests). Funny how 13 months ago when I had my last NCS, my neuro tried to talk me out of surgery, saying I didn't need it...to this time, when the results of my right hand proved it had got worse...he was talking me into the surgery! lol He wants to do the tests again in 6 months this time...then I will be referred for surgery! I will probably have to wait a while anyway...that's the way it goes here.

~Jaime~
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Old 03-24-2009, 02:19 AM #20
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Jamie, I get freezing shots both in my head and neck. The head ones I can manage, but I had the neck ones twice and told my pain specialist not to do them anymore. They are unbearably painful and *so* not worth it for me. It hurt so much going through the muscle tissue, I thought I was going to be sick and the room was spinning. I was lying down, but I felt very faint.

After the freezing wore off, it hurt worse than the original pain so I decided no more of that! I also don't get the steroid part of the injection anymore. I get freezing almost every week and I was getting the metallic taste in my mouth really bad from the steroids. The nature of my ON is not inflammation anyway-it's my MS so the steroid does nothing for me anyway.

Glad the shots are helping you. It's too bad you have to wait so long to get in. I have a standing order that if I need in on an emergent basis, the receptionist who books for my pain doc is to fit me in no matter what. I am very lucky.

The whole stim thing for me has been on again/off again, but there is new hope-there is a neurosurgeon here who has done 2 implants so far on ON patients and so my pain specialist is going to write him a letter and see if he will take me on so I might get a trial with the stim. Has your doc said whether a stim might be an option for you? I guess it depends on how bad each case is. Mine is pretty severe.

Hang in there. It's not easy, I know.
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