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Occipital Neuralgia Relief

Brain & Nervous System | Last Active: 6 hours ago | Replies (50)

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Profile picture for SusanEllen66 Susan McMichael @SusanEllen66

@barbiejohanna wow! You have been courageous in your battle with ON!

I have it also. Sometimes I tell people that even my hair hurts. I have to laugh sometimes.

Over the last 2 months I’ve fallen backwards twice, and hit my right cheek. My jaw joint is messed up. I’m getting shots of lidocaine across the back of my head, behind my ear, and scalp.

I have a movement disorder that makes me a fall risk. If I bend forward, there’s a good chance I will fall back down.

Wishing you all the best.

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Replies to "@barbiejohanna wow! You have been courageous in your battle with ON! I have it also. Sometimes..."

@SusanEllen66 Were you diagnosed with ON? If yes, then have your hair hurt is part of the ON but not every ON sufferer has this type of pain on top. Numbing medicine called Bupivacaine or Marcaine is used in Nerve Blocks including a steroid. However, the numbing med doesn't always numb the area unless the Dr hits exactly on the nerve. If it does I the numbness only lasts for up to 4 hrs maybe. What my Dr has learned is that I feel my head with my fingers pressing down to pinpoint the area that the pain is extremely worse so he can put the needle to that exact spot & inject. He injects a little in every spot until he has no more liquid in the syringe. Do, typically I get 4-6 in back of head & same # of injections on top of my head. Unfortunately this last time I let one of the Fellowship Dr my Dr is training do the injections. I won't do it again. He wasn't paying close enough attention to the areas I pointed to. This is because I believe he was nervous because my Dr was talking to him while he was doing injections.
I just want to let others know with ON like mine, that my head gets even worse the next day for a week or so because the injections cause the nerves to become more inflamed. It takes time for the steroid that is injected to really work. This is another reason why I now take Medrol Dose pack about 4 days after my injections to help calm down the increased inflammation. If anyone else who has ON wants to share their experience with me or ask questions I would like to hear from you.