1. < Brain & Nervous System

Occipital Neuralgia

Posted by jmb73 @jmb73, Sep 11, 2019

I have been having headaches on one side of my head and have recently been diagnosed with occipital neuralgia. They recommend a nerve bloc but I wonder anyone else has this and how they handle it.. I don't want a nerve bloc. The headaches are usually mild but occasionally the pain wakes me up. They got worse after I had my Gamma surgery. Any ideas would be appreciated. Thank you.

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cindi5464 | @cindi5464 | Feb 3 6:53am
In reply to @reneelynn "I have burning in my top of my head , especially the middle of my brain...Soo..." + (show)
@reneelynn

I have burning in my top of my head , especially the middle of my brain...Soo intense...and then tingling moves around to side front... lots of neck pain and stiffness and back herniated disc and degenerative spine starting... Dr.s never understand...and had this many years,I'm almost 50... it's Soo bad...I get hot fever up there too in my top of my head...Dr is referring me to my closest pain clinic...so I can see neurologist Soon... it's unbearable anymore!!! 😓

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I have finally been diagnosed with occipital neuroligia, go for nerve blocks soon. I have all of your symptoms and pain in ear , cheek, eyes.
I'll let you know if it works ok.
Cindi from Massachusetts

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2 replies
raisanicole | @raisanicole | Feb 3 8:03am
In reply to @cindi5464 "I have finally been diagnosed with occipital neuroligia, go for nerve blocks soon. I have all..." + (show)
@cindi5464

I have finally been diagnosed with occipital neuroligia, go for nerve blocks soon. I have all of your symptoms and pain in ear , cheek, eyes.
I'll let you know if it works ok.
Cindi from Massachusetts

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Please let us know if it works for you. I cancelled my nerve block because I was concerned about other people's reactions to it. Good luck and Be safe

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reneelynn | @reneelynn | Feb 3 9:21am

Going to see neurologist first...see what he thinks...will be a while they told me hard to get in!!! Thanks for comments!!!

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littleoldlady | @littleoldlady | May 4 12:46pm

I've been diagnosed with Occipital Neuralgia. I want to hear from others about this painful conditionn.

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1 reply
dchrzano | @dchrzano | May 5 11:59am
In reply to @littleoldlady "I've been diagnosed with Occipital Neuralgia. I want to hear from others about this painful conditionn." + (show)
@littleoldlady

I've been diagnosed with Occipital Neuralgia. I want to hear from others about this painful conditionn.

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Had it ever since I contracted mono in my 20s… it was almost overnight after the high fever. I’m 61 now… have had nerve blocks don’t work the actual injection caused a nodule/swelling at insertion sites at either side of occiput - took weeks to finally absorb. I live w it and can’t sleep on my back… occipital area and neck were never the same after mono as well as upper back and joints. I take Advil once in a while, am on Cymbalta for fibromyalgia finally diagnosed but it doesn’t help. Also have Menieres and tinnitus. Good luck, everyone is different, maybe you’ll find something that works. Stress contributes greatly but I believe there must’ve been some EBV (Epstein Barr virus that causes mono) nerve damage when I had mono.

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1 reply
littleoldlady | @littleoldlady | May 5 2:10pm
In reply to @dchrzano "Had it ever since I contracted mono in my 20s… it was almost overnight after the..." + (show)
@dchrzano

Had it ever since I contracted mono in my 20s… it was almost overnight after the high fever. I’m 61 now… have had nerve blocks don’t work the actual injection caused a nodule/swelling at insertion sites at either side of occiput - took weeks to finally absorb. I live w it and can’t sleep on my back… occipital area and neck were never the same after mono as well as upper back and joints. I take Advil once in a while, am on Cymbalta for fibromyalgia finally diagnosed but it doesn’t help. Also have Menieres and tinnitus. Good luck, everyone is different, maybe you’ll find something that works. Stress contributes greatly but I believe there must’ve been some EBV (Epstein Barr virus that causes mono) nerve damage when I had mono.

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Thanks so much for responding.

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med216 | @med216 | May 9 1:56pm
In reply to @cindi5464 "I have finally been diagnosed with occipital neuroligia, go for nerve blocks soon. I have all..." + (show)
@cindi5464

I have finally been diagnosed with occipital neuroligia, go for nerve blocks soon. I have all of your symptoms and pain in ear , cheek, eyes.
I'll let you know if it works ok.
Cindi from Massachusetts

Jump to this post

I, too, was diagnosed with occipital neuralgia after suffering for 2 months with extreme, flaming pain that started at the back of the head and radiated to the crown. The pain was so bad that the crown of my head was tender to the touch. The neurologist prescribed Qlipta, Nurtec, and Ubelvy; none worked. I had to sleep upright with an ice pack. This went on for two months without relief; the night was always worse. I was referred to a headache specialist who identified the symptoms as classic occipital neuralgia. A nerve block was administered, and I had temporary relief for four days, and then the pain returned. I was prescribed a low dose of Gabapentin. Once the dose was increased to 300 mg, I had good pain relief for 3 weeks, and then the pain returned. I have been on 600 mg for 1 month now, and the pain, while still present, is tolerable. I would say it's 2/3 on a scale of 1-10. I am scheduled for another nerve block next month, and I am hoping that, along with the current dose of Gabapentin will eliminate the pain. I also did 4 weeks of PT which has provided some relief.

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2 replies
SusanEllen66 | @SusanEllen66 | May 10 1:28am
In reply to @med216 "I, too, was diagnosed with occipital neuralgia after suffering for 2 months with extreme, flaming pain..." + (show)
@med216

I, too, was diagnosed with occipital neuralgia after suffering for 2 months with extreme, flaming pain that started at the back of the head and radiated to the crown. The pain was so bad that the crown of my head was tender to the touch. The neurologist prescribed Qlipta, Nurtec, and Ubelvy; none worked. I had to sleep upright with an ice pack. This went on for two months without relief; the night was always worse. I was referred to a headache specialist who identified the symptoms as classic occipital neuralgia. A nerve block was administered, and I had temporary relief for four days, and then the pain returned. I was prescribed a low dose of Gabapentin. Once the dose was increased to 300 mg, I had good pain relief for 3 weeks, and then the pain returned. I have been on 600 mg for 1 month now, and the pain, while still present, is tolerable. I would say it's 2/3 on a scale of 1-10. I am scheduled for another nerve block next month, and I am hoping that, along with the current dose of Gabapentin will eliminate the pain. I also did 4 weeks of PT which has provided some relief.

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@med216 I also have ON. My pain is just like what you described plus other things. The pain can move down the face, around the eyes, to the ears, and you may think you have a toothache.
Mine started with my left eye temporarily losing sight 3 time within 2 days.
After finally being diagnosed correctly I started P/T. There they taught me how to stretch my neck muscles. I also figured out that my new bed pillow was to blame. It held my head it a bad position.
I’m better now, but still get episodes of scalp and neck pain. When it happens I stretch my muscles.

I wish you the best.

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lakesofdelray | @lakesofdelray | May 10 10:00am

I have been to 4 neurologists. 2 said I had ON and 2 said I didn’t. Where is the best place in NYC to go for an answer?

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mablesmith | @mablesmith | May 10 3:13pm
In reply to @med216 "I, too, was diagnosed with occipital neuralgia after suffering for 2 months with extreme, flaming pain..." + (show)
@med216

I, too, was diagnosed with occipital neuralgia after suffering for 2 months with extreme, flaming pain that started at the back of the head and radiated to the crown. The pain was so bad that the crown of my head was tender to the touch. The neurologist prescribed Qlipta, Nurtec, and Ubelvy; none worked. I had to sleep upright with an ice pack. This went on for two months without relief; the night was always worse. I was referred to a headache specialist who identified the symptoms as classic occipital neuralgia. A nerve block was administered, and I had temporary relief for four days, and then the pain returned. I was prescribed a low dose of Gabapentin. Once the dose was increased to 300 mg, I had good pain relief for 3 weeks, and then the pain returned. I have been on 600 mg for 1 month now, and the pain, while still present, is tolerable. I would say it's 2/3 on a scale of 1-10. I am scheduled for another nerve block next month, and I am hoping that, along with the current dose of Gabapentin will eliminate the pain. I also did 4 weeks of PT which has provided some relief.

Jump to this post

I also was diagnosed with Occipital Neuralgia and was prescribed some of the same meds and a couple others which didn't help. My neurologist then prescribed Topiramate 100 MG 2X a day and it has helped tremendously. Every case is different of course but this certainly worked for me.

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