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 01-06-2009, 03:43 PM #1
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Default Radio Frequency Ablation update

I went through with it and I'm really uncomfortable. My PM doc did all four levels and the first three weren't too bad. The last one was pretty rough. They took four or five shots at it to get a total of 90 seconds of burn time, and each time the pain I was feeling got so bad that they had to stop, wait, and go again. Then he added more numbing medication to try to get it finished, but it kept on being painful. Finally, they got the full time, I think, but I'm a little fuzzy on that. Anyway, ice is my friend right now and moving is a little difficult because of the pain and my muscles aren't happy, but thats no surprise. I think I'll go back to around the clock dosing of klonopin for awhile. He told me I could be miserable for up to a month. I hope its not that long, but time will tell. I also hope this works for me.

Prairegirl, I don't know how you went through yours without meds. The last one was really hard to handle, and I had meds. I hope tomorrow is a better day. EE
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Old 01-06-2009, 08:25 PM #2
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EE
I hope this works for controlling things
you have been living with such a ugly monster for a good bit of time now. listen to your body and rest rest rest! be married to the ice pack for a month or longer if need be. heck its in the 80s here anyways .

I pray this is going to help you be rid of the pain.
thanks for up dating us

I have lots on my plate and havent had chance to touch base with you but you have been on my mind and in my positive thoughts. t.n / o.n. it all stinks!
rest and let yourself heal and recoup. your in my healing prayers ellena
PEACE
BMW
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Old 01-07-2009, 01:40 AM #3
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I went through with it and I'm really uncomfortable. My PM doc did all four levels and the first three weren't too bad. The last one was pretty rough. They took four or five shots at it to get a total of 90 seconds of burn time, and each time the pain I was feeling got so bad that they had to stop, wait, and go again. Then he added more numbing medication to try to get it finished, but it kept on being painful. Finally, they got the full time, I think, but I'm a little fuzzy on that. Anyway, ice is my friend right now and moving is a little difficult because of the pain and my muscles aren't happy, but thats no surprise. I think I'll go back to around the clock dosing of klonopin for awhile. He told me I could be miserable for up to a month. I hope its not that long, but time will tell. I also hope this works for me.

Prairegirl, I don't know how you went through yours without meds. The last one was really hard to handle, and I had meds. I hope tomorrow is a better day. EE

Oh goodness! You poor thing! I can totally relate and honestly, I don't know how I got through it either. It is so painful and unfortunately, it will likely hurt for quite some time. I think it's like taking a stick and poking it inside an angry hive of bees.

I hope that the pain will be "worth it" and you get some relief in the long run. Take whatever drugs you can to get some pain relief while you recover from this and see also if you can get some sleeping pills-my guess is, it could be hard to sleep.

Hang in there, I am think of you. ((hugs))
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Old 01-07-2009, 04:12 AM #4
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BMW & PG, thanks for your good wishes. Sleeping isn't coming easy so here I am. I'm amazed at what we do to try to rid ourselves of pain. Most people don't have a clue, do they.

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Old 01-07-2009, 12:55 PM #5
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BMW & PG, thanks for your good wishes. Sleeping isn't coming easy so here I am. I'm amazed at what we do to try to rid ourselves of pain. Most people don't have a clue, do they.

Hugs

No, I don't imagine they do. Sometimes I can't quite believe it myself-to say it outload sonds like I am talking about someone else's life.
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Old 01-07-2009, 04:30 PM #6
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We all share that and have that aspect of these conditons in common. I can identify with you both. I keep posting here because there is so little information on forums about ON, but my posts could easily go in the spinal disorders thread too since I have the disc issues and the facet junk and radiculopathy going on at the same time. I'm still hanging in here with the pain but I still have the nonstop ON throbbing pain going and my shoulder is giving me fits still along with the stupid red hot poker that is stabbing me in the back of my skull. I think that one is the worst until the burning in the neck starts. That one runs a close second to TN pain in the early days of TN. Ok, I'm rambling here so chalk it up to increased meds. Low pain wishes and peaceful thoughts, EE
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Old 01-07-2009, 06:39 PM #7
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I wonder how many folks suffer from ON plus something else? I was disgnosed with MS in March 2008 and then 5 months later with ON, which came on suddenly after I had aseptic meningitis from an MS treatment. Personally I think the treatment caused or triggered the ON.

I had a BRUTAL headache that I didn't realize was anthing more than a bad headache for 3 weeks. When it got to the point I could hardly speak I was in so much pain (I am a queen at ignoring pain, believe me-I've walked around with a leaking appendix, on the verge of going septic) I finally went and saw my neuro who was amazed I was still functioning.

I was treated with steroids and then as soon as that finished, along came the ON. Which it took some time to figure out, but I finally got in to see my pain specilaist and she knew right away what was wrong.

Anyway, not trying to steal your thread-you just got me to thinking how manyof us have dual diagnosis.
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Old 01-07-2009, 07:58 PM #8
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PG, I never get uptight about stealing threads. Everything we talk about here revolves around pain. I guess your ON is from demylination of the nerves given your MS diagnosis. The theory around mine is the muscles are so tight and in spasms that they are making the nerves flare. Whatever the problem, I so hope this works.
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Old 01-08-2009, 06:01 PM #9
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PG, I never get uptight about stealing threads. Everything we talk about here revolves around pain. I guess your ON is from demylination of the nerves given your MS diagnosis. The theory around mine is the muscles are so tight and in spasms that they are making the nerves flare. Whatever the problem, I so hope this works.

Well see, that's what you and I would think, logically. My MS is c2-6, T 4&5 and L 10. So it would make sense it was the MS doing it. My pain specialist doesn't seem to think so.

I also thought the ON was triggered from having aseptic meninigitis and walking around with it for 3 weeks before I had it treated. The ON came hot on the heels of the AM. Again, she thinks NO.

She says it's the muscles squishing my nerves, just like yours. Weird eh?
I still say it's MS and AM related, but what do I know?
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Old 01-08-2009, 06:45 PM #10
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Well see, that's what you and I would think, logically. My MS is c2-6, T 4&5 and L 10. So it would make sense it was the MS doing it. My pain specialist doesn't seem to think so.

I also thought the ON was triggered from having aseptic meninigitis and walking around with it for 3 weeks before I had it treated. The ON came hot on the heels of the AM. Again, she thinks NO.

She says it's the muscles squishing my nerves, just like yours. Weird eh?
I still say it's MS and AM related, but what do I know?
What do any of us know. We just get to live with this *&#$. I was confused and amazed when the NS said the muscles were the cause of it. I found a detailed picture of the nerves and they do exit in the muscles(probably not the best description, but all I can give right now). In theory, it makes sense, but right now, the stupid hot poker keeps getting rammed up the back of my head and I don't really like it. Anyway, my PM doctor was going to do a direct ON block and he didn't. He said that the RFA to C3 should take care of it. Time will tell, but right now, the ON's are pretty angry about all of this. I upped the dose of klonopin and I'm feeling pretty spacey too. And, I have the dizziness again that I got with the diagnostic blocks, so I'm begining to think that anything thats done to the cervicals effects more than I'd expect or my wiring is totally screwed up. I think i'd buy the latter more. And I'm watching the stupid calf muscle that keeps spazzing to see if all this has any effect on it(that may be related to the radiculopathy junk I've got going on). Oh well, our similarities are weird
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