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 12-04-2008, 03:56 AM #1
Shelbyrhay Shelbyrhay is offline
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Default HI Everyone

Hi I had a few questions.
So I just got diagnosed with O.N. and my main symptoms are stiff neck, eye pain, pounding headaches in the back of my head and severe burning and sensitivity on my scalp. I can't shower easily because it hurts the scalp. Anyway, I am on Neurotin and I am wondering if anyone else has taken this? It works really well for a bit and then the burning comes back. I had steriod shots on Tuesday but oddly it moved my burning to the top of my head, a place it hadn't been before and numbed the nerves pretty well on the back of my head.
My symptoms of this Neurotin is severe mood swings(think crying or happiness) and I lose my thought so fast. Talking in a complete sentence without forgetting is a big thing.
Does anyone else have feedback on this drug?
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Old 12-04-2008, 07:16 PM #2
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I've taken it before, but for another condition I have to deal with. I can relate to your side effects from the med as I had a lot of trouble with maintaining a train of thought and it made me pretty dumb and sleepy. I know I had others, but I'd have to look them up. If the burning ON pain is coming back, its because the med is probably out of your system. How often are you taking it?
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Old 12-05-2008, 01:42 AM #3
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Thanks for your response. I know that the meds go out of your system pretty quick with Neurotin. My Neurologist wanted me on this first because he is pretty careful and said this one has more history to it. I don't know. We are all at the hands of our physician.
The steriod shots have gotten out of my head now. Just a few days of relief from the scalp pain but not worth it in respect to the fact that my skin on my face is burning like mad, and the injection sites are still painful.
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Old 12-05-2008, 06:07 AM #4
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The steroid shots I had, a series of two, did calm the nerves down a bit, but thats gone now and I'm getting more pain like before I started having the blocks. The half life of neurontin is 5-7 hours, so check with your neurologist and explain that the pain returns prior to your next dose.
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Old 12-05-2008, 07:09 AM #5
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well, my head just went nuts, I couldn't even move my neck. i went to the doctor on emergency and he put some acupuncture points into my earlobes. Well, they helped tremendously! I can actually move. I still have some cloudy pain but its not nearly as bad. Before it felt like someone was smashing my cranium with their hands or something. now it is more like a normal headach.
I am still taking the meds, but I do feel better.
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Old 12-09-2008, 05:09 AM #6
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Well, Saturday was the breaking point for me and landed in the ER. I literally thought this is it, I'm dying. i'm having a stroke or something.
Anyway, they pumped me with an IV of Valium for my muscles. I couldn't move my neck and my head felt like it was going to explode and pour out of my ears. It was the worst by far.
Anyway, the ER doctor prescribed valium for my muscles plus a new drug, indometrhacin, which is usually used for gout. He said that since the prednisone helped but I can't take it continually as well as I can't stay on Motrin because it caused a serious rebound effect for me, this might be the trick.

So now my meds are as follows...geez. I feel like a walking drug store.
6 am
300mg Neurotin
20 mg Baclofen
1 Indomethacin
1030 am
300 mg Neurotin
noon
20 mg baclofen
1 Indomethacin
230 pm
300 mg Neurotin
6pm
1 Indomethacin
600 mg Neurotin
20 mg Baclofen
8pm
10 mg Valium

Now I am telling you all this because it seems to be effective so far.
i do have the burning on the back of my scalp but not too bad, its managable. My neck is feeling much better since starting the valium
I cannot tolerate 600 mg Neurotin at noon so breaking it up helps alot.
The Indomethacin seems to reduce the pressure in my head.
The pharamacist was awesome and came out and talked about all 4 meds and how she was shocked at the mix because it came from 3 different doctors but said together this was an awesome mix and not one that is usual. All four work differently but can target all the issues that could causing the Occipital Neurolgia.

Perhaps this could work for some of you guys? None of them are serious pain killers but are working to target the issue instead of masking the pain. I hope this helps for you guys.
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