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 09-25-2008, 08:05 PM #1
mtrout mtrout is offline
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i'm new here. I have had severe headache for two years and was finally dignose in May,2008. I will be going for my fourth nerve block in the morning. It seems I'm in pain constantly. I got relief for a 2-3 week time with the second block. I now have so much pain that at times I can not move, it seems that pain medicine does nothing to help. Any advice you can give me to help to feel normal would be great.
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Old 10-03-2008, 01:30 AM #2
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I'm so sorry to read about the pain that you've been suffering.

I don't have the same complaint as you do, but I saw your post and just wanted to say Hello!

Welcome to NeuroTalk. I hope you get some relief from your symptoms soon, and good luck with the nerve block tomorrow.

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Old 10-03-2008, 03:36 AM #3
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So great to have you join our Neuro Talk family...hope some other folks will chime in and offer some help...take care!!
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Old 10-03-2008, 11:50 AM #4
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Welcome from me as well, but I'm sorry you have to be here.

I've just undergone my second nerve block to the ON and that is doing pretty good right now. I'm simultaneously undergoing diagnostic medial branch blocks for spine/facet problems and just had my second one of those too. The first one really set off my ON so this time he did the medial branch block with the ON block. My pain management doc is trying really hard to keep from giving me more meds to treat this problem as I'm already on a bunch of other meds for other conditons and I have a lot of problems taking meds. Having said that, have any of your doctors recommended that you try any of the anticonvulsants? That is usually what they prescribe for this condition. I'm not a doctor and I'm just learning tons about this and my other problems so please bear that in mind. I do know how you feel as mine is there 24/7 and it gets old. The previous two weeks were like that for me and the relief I'm getting right now is pretty awesome and way over due.
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Old 10-04-2008, 01:35 AM #5
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Hi and welcome, from an O.N. sufferer. I get the nerve blocks too, but they last a bit longer, thankfully, for me. I've had 4 blocks so far, but haven't needed them as often as you have. I hope you can find something else that will help with the pain also.
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Quote:
Originally Posted by mtrout View Post
i'm new here. I have had severe headache for two years and was finally dignose in May,2008. I will be going for my fourth nerve block in the morning. It seems I'm in pain constantly. I got relief for a 2-3 week time with the second block. I now have so much pain that at times I can not move, it seems that pain medicine does nothing to help. Any advice you can give me to help to feel normal would be great.
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Old 10-30-2008, 11:17 PM #6
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Hi mtrout!!

I take muscle relaxers, Flexiril. I am at the point now where they don't even make me sleepy anymore. But, that's the only thing that seems to help with a little bit of the pain. Because your neck muscles and Occipital muscles are tight and putting pressure on the Nerves and making them angry.

When I was first diagnosed with ON, I had the most excruciating pain in the base of my skull for 52 days straight!!! I didn't think I was ever going to be pain free again. Now, one year later I'm figuring out what sets off the ON pain and try to avoid those things. I've learned a lot about that darn nerve, as you will too.

Good luck.
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Old 11-04-2008, 01:14 AM #7
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Default New here but not to pain.

I have had three c-spine surgeries in the last 14 months. I suffer from chronic head pain coming from C2 and riding up my occipital nerve. I am 35 and have been on alot of pain meds. I have been on fentenyl, skelaxin, neuroten and many more. I've had c2 decompression on both sides and although the pain has changed it has not subsided much. I take vicodin HP with naproxin and robaxin and to get to sleep I take 3mg of xanax. My body has built up an extreme tolerance for the meds and it does so very quickly. I have had some temp relief with epidurals directly into c2 but they dont last long. looking for something more permanent so I can get off the meds. Wishful thinking.
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Old 11-08-2008, 07:07 AM #8
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Default botox

I've tried many meds & combo's --too many to list or recall--
that either didn't help , adverse effects , allergic reactions.
some muscle relaxants & pain meds help but as previous expressed, tolerance is issue & relief is limited
My neuro had been doing nerve blocks for years, which did help but duration varied--from few weeks to few days...

2 yrs ago he suggested BOTOX -- felt duration relief would be much better than blocks.
took year to get approved
in January i finally got to try and it was promising.

2 months later i went back for f/u appt, thinking-hoping I'd be getting more Botox.
for some reason, got "denied"
few months ago got call it was again approved. I've been waiting for DR to get drug, which seems to be scarce, but got call its in & appt scheduled.
so in Dec. i will again try Botox.

I"ve heard, read that
some do well w/ few treatmts, others need to go every 2-3 months for 'maintainence" -- and some others say it helped first few times then just didn't seem to work anymore.

it is expensive, and only few 'approved' conditions which insurance covers.
even then co-pays can be high.

this may be an option or worth checking into
will update on my experiences
My neuro feels it will also help Migraines, which for me are the worst & most debilitating aspect


best wishes-- hope you all soon find help, relief......

Last edited by pono; 11-08-2008 at 09:18 AM.
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Old 11-08-2008, 08:04 AM #9
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Quote:
Originally Posted by rwkerr View Post
I have had three c-spine surgeries in the last 14 months. I suffer from chronic head pain coming from C2 and riding up my occipital nerve. I am 35 and have been on alot of pain meds. I have been on fentenyl, skelaxin, neuroten and many more. I've had c2 decompression on both sides and although the pain has changed it has not subsided much. I take vicodin HP with naproxin and robaxin and to get to sleep I take 3mg of xanax. My body has built up an extreme tolerance for the meds and it does so very quickly. I have had some temp relief with epidurals directly into c2 but they dont last long. looking for something more permanent so I can get off the meds. Wishful thinking.
Have you considerd Radio Frequency Ablation? There are quite a few posts on here about it. I'm scheduled to have my facet joints done this week, and possibly the occipital nerve down the road, if the pain doesn't let up. Take care
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Old 11-13-2008, 12:56 AM #10
paininhead paininhead is offline
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Quote:
Originally Posted by mtrout View Post
i'm new here. I have had severe headache for two years and was finally dignose in May,2008. I will be going for my fourth nerve block in the morning. It seems I'm in pain constantly. I got relief for a 2-3 week time with the second block. I now have so much pain that at times I can not move, it seems that pain medicine does nothing to help. Any advice you can give me to help to feel normal would be great.
I did get some relief from accupuncture - have you tried it? It is very gentle & addresses the inflamed nerve to calm - it helped when I was in the "can't move stage". My nerve block was Oct 24th & I am now in pain again. Not sure if that is normal as it is my fist but the pain clinic wants me to go for the facet proceedure - said getting nerve block often is not good- especially since I already have ostesporosis & steriods can make it worse. My empathy for what you are going thru.
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