Discussions By Condition: Nerve conditions

Occipital Neuralgia

Posted In: Nerve conditions 12 Replies
  • Posted By: Jaime_Aus
  • July 27, 2007
  • 05:09 AM

I was just wondering...is there anyone else here who has Occipital Neuralgia? Anyone with any advice on treatments for it, that hopefully help?
I was diagnosed with Occipital Neuralgia late last year, after almost 12 months of tests and scans, to eliminate everything else, to find answers!
The Occipital Neuralgia was caused, it seems, by damage to the nerves from surgery done through my neck, for an Arachnoid Cyst. That op was a few years ago now, but nerve pain developed last year.
I'm still yet to find the right treatment. I have tried many different types of meds, but they all had too many bad side-effects. So, I'm hoping to find a treatment that works, soon!

~Jaime~

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12 Replies:

  • Hi im 26 years old and im from Scotland. I was involved in a road traffic accident june 2006 and dec 2006, in both accidents I was hit from behind. In february this year I felt much better and decided to do some swimming, 35 lengths of the pool doing the breast stroke incorrectly i.e. head tilted right back.I have now been diagnosed with occiptal neuralgia. At first the pain was so severe i thought there was something terribly wrong with me i.e. brain tumor, brain haemorrige etc but the doctors (seven different ones and a physiotheripist) were insisting that the headaches were normal. I was getting stabbing sensations in my head and eyes, painful spasms that were making me so sick i required anti sickness drugs. I couldn't stand the light and sound when the headaches were in full throttle, they kept saying it was a cluster migraine until one night my scalp felt on fire and I was getting hot and cold sensations on my head.I was told to go to the hospital that night, when I seen the the most helpful wee doctor and he diagnosed it right away, I had only been suffering for 4 months needlessly.Ive been put on 20mg of Amitriptyline. This is my second month and It really has dampened down the severity of the condition making it tolarable. Albeit i take it at night because i need to be able to drive to work in the day as it can make you quite sleepy, but im my opinion , worth it. Ive got another month to go so hopefully I should notice a difference. I know other people have had side effects using this drug such as a dry mouth, but so have I but i can say with all honesty knowing what your suffering, is it so bad to have a dry mouth for a month or two.I sympathise with you and your condition, i hope they give you the good meds soon.Love fromThe wee lass fae ScotlandI was just wondering...is there anyone else here who has Occipital Neuralgia? Anyone with any advice on treatments for it, that hopefully help?I was diagnosed with Occipital Neuralgia late last year, after almost 12 months of tests and scans, to eliminate everything else, to find answers!The Occipital Neuralgia was caused, it seems, by damage to the nerves from surgery done through my neck, for an Arachnoid Cyst. That op was a few years ago now, but nerve pain developed last year.I'm still yet to find the right treatment. I have tried many different types of meds, but they all had too many bad side-effects. So, I'm hoping to find a treatment that works, soon! ~Jaime~
    Anonymous 42,789 Replies Flag this Response
  • Hi Jakki, I certainly can understand the frustration of trying to get a diagnoses, it was about 8 months of tests and scans and being told it's just migraines, before a Neurosurgeon told me it was probably Occipital Neuralgia!The first meds I tried once I had the diagnosis, was Amitriptyline, but I was given a higher dose, and I couldn't handle the many side-effects. I was drowsy all day, and was nauseous and had the dry mouth. I put up with it for 2 months, but I was permanently sleepy, and it made me terrified to go out anywhere, in the end.I have just spent over 2 months on Topamax, which has helped a bit, but it had many side-effects too, and one side-effect was eye pain, which could cause damage, so my Neurologist decided I should try something else. I have just finished tapering off the Topamax. Next treatment will be a nerve block in 2 weeks. Hopefully that might help... ~Jaime~ Hi im 26 years old and im from Scotland. I was involved in a road traffic accident june 2006 and dec 2006, in both accidents I was hit from behind. In february this year I felt much better and decided to do some swimming, 35 lengths of the pool doing the breast stroke incorrectly i.e. head tilted right back. I have now been diagnosed with occiptal neuralgia. At first the pain was so severe i thought there was something terribly wrong with me i.e. brain tumor, brain haemorrige etc but the doctors (seven different ones and a physiotheripist) were insisting that the headaches were normal. I was getting stabbing sensations in my head and eyes, painful spasms that were making me so sick i required anti sickness drugs. I couldn't stand the light and sound when the headaches were in full throttle, they kept saying it was a cluster migraine until one night my scalp felt on fire and I was getting hot and cold sensations on my head. I was told to go to the hospital that night, when I seen the the most helpful wee doctor and he diagnosed it right away, I had only been suffering for 4 months needlessly. Ive been put on 20mg of Amitriptyline. This is my second month and It really has dampened down the severity of the condition making it tolarable. Albeit i take it at night because i need to be able to drive to work in the day as it can make you quite sleepy, but im my opinion , worth it. Ive got another month to go so hopefully I should notice a difference. I know other people have had side effects using this drug such as a dry mouth, but so have I but i can say with all honesty knowing what your suffering, is it so bad to have a dry mouth for a month or two. I sympathise with you and your condition, i hope they give you the good meds soon. Love from The wee lass fae Scotland
    Jaime_Aus 25 Replies Flag this Response
  • Pls Let me know how you get on with that, Ive heard that can be quite painful but really effective.Ive heard some really good success stories with that.Jak
    Anonymous 42,789 Replies Flag this Response
  • Only a week to go before I see the Neurologist to have the nerve block.I'm nervous already, I'm not looking forward to the needles and the pain, but at least I won't be able to see the needles going in! Hope it works.:o ~Jaime~ Pls Let me know how you get on with that, Ive heard that can be quite painful but really effective. Ive heard some really good success stories with that. Jak
    Jaime_Aus 25 Replies Flag this Response
  • Oh, I forgot to look back at this thread!:o After going to see my Neurologist last week, I didn't end up getting the nerve block this time. My Neurologist changed his mind! He decided to try me on a low dose of Amitriptyline. It hasn't done much, so far... ~Jaime~ Pls Let me know how you get on with that, Ive heard that can be quite painful but really effective. Ive heard some really good success stories with that. Jak
    Jaime_Aus 25 Replies
    • August 21, 2007
    • 11:16 AM
    • 0
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  • Update...Saw my Neurologist yesterday, and he gave me the nerve block! I told him all that the meds were doing to me, good and bad. He wanted me to continue on them for another month at least. Then he said he would do the nerve block, I didn’t even have to ask. It was over quickly and didn’t hurt too much…..it wasn’t as bad as I thought it might be! lol It seemed to work after a few minutes, I really hope it lasts. He only did it on the left side this time, as that is the main source of the pain. Now the head feels a bit better, but it didn’t do anything for the dizziness that I’ve had for the last 4 days! Oh well...Anyway, time will tell how long it lasts…:o ~Jaime~
    Jaime_Aus 25 Replies
    • September 13, 2007
    • 04:19 AM
    • 0
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  • Jaime, I have had Occipital Neuralgia for 3 years since being misdiagnosed with Brain Cancer. They gave me whole brain radiation and it damaged the Occipital Nerve. First of all, I found a great Pain doctor. She put me on Topomax and Gabatril and that helped some. Then, every 3 months I had a nerve block but after a while they were getting closer and closer together and so she did a procedure using microwave. It lasted about 5 months. Now I have found a doctor in Houston who is going to remove the nerve surgerically. I am apprehensive about this but I have done lots of research on it. My life is turned upside down for about 2 weeks every 5 months with these bad headaches and extreme pain, so I want to be rid of it. I will let you know if it works.
    Anonymous 42,789 Replies
    • September 8, 2008
    • 02:50 AM
    • 0
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  • I was just wondering...is there anyone else here who has Occipital Neuralgia? Anyone with any advice on treatments for it, that hopefully help?I was diagnosed with Occipital Neuralgia late last year, after almost 12 months of tests and scans, to eliminate everything else, to find answers!The Occipital Neuralgia was caused, it seems, by damage to the nerves from surgery done through my neck, for an Arachnoid Cyst. That op was a few years ago now, but nerve pain developed last year.I'm still yet to find the right treatment. I have tried many different types of meds, but they all had too many bad side-effects. So, I'm hoping to find a treatment that works, soon! ~Jaime~ Hi jaime, i live close to houston and have an appt. with dr. blake. is this the doctor your goin too. I have an appt. in october. please, please email me i need to talk to another person who has this. Jknee59@msn.com
    jknee 59 1 Replies
    • September 8, 2008
    • 10:16 PM
    • 0
    Flag this Response
  • Hi jaime, i live close to houston and have an appt. with dr. blake. is this the doctor your goin too. I have an appt. in october. please, please email me i need to talk to another person who has this. Jknee59@msn.com No, I live in Australia, so I can't really help you in regards to finding the right doctor.
    Jaime_Aus 25 Replies
    • September 10, 2008
    • 01:15 AM
    • 0
    Flag this Response
  • Jaime, I have had Occipital Neuralgia for 3 years since being misdiagnosed with Brain Cancer. They gave me whole brain radiation and it damaged the Occipital Nerve. First of all, I found a great Pain doctor. She put me on Topomax and Gabatril and that helped some. Then, every 3 months I had a nerve block but after a while they were getting closer and closer together and so she did a procedure using microwave. It lasted about 5 months. Now I have found a doctor in Houston who is going to remove the nerve surgerically. I am apprehensive about this but I have done lots of research on it. My life is turned upside down for about 2 weeks every 5 months with these bad headaches and extreme pain, so I want to be rid of it. I will let you know if it works. Hi, it's been a while since I got back to this message!I have not gone as far as considering surgery for my nerve pain yet. I have been having the nerve blocks and they have been working well for me. It seems with each block I have, I get slightly more and more time with pain relief! It would be nice if that worked for everyone.I was on the Topamax last year, but couldn't cope with the side-effects. I'm so glad that the nerve blocks have worked well for me, I don't need other pain meds very often anymore, usually only when the block is wearing off.~Jaime~
    Jaime_Aus 25 Replies
    • September 10, 2008
    • 01:22 AM
    • 0
    Flag this Response
  • Hey, i'm Sarah, i think i have it because for about a week now i have been experiencing terrible shooting pains at the back of my head & all behind my ear lobes.Sometimes, the pain feels so bad it makes me feel physically sick.I'll be going the doctors soon i reckon...
    Anonymous 42,789 Replies Flag this Response
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  • I've been going through this for nearly 3 years.  Pain doctors were no help with me, and I think it mainly has to do with not finding doctors who inject that high up on the neck.I never had headaches, it felt like someone pounded a nail into my neck right were my neck and skull attach.  It took a third opinion at a pane specialist before I made some headway.Amitriptyline is the first thing to give significant relief.When I had nerve blocks done they were helpful for a short period, but when I went in for Radio Frequency Ablation and had all the nerves from C2 to C6 burt off with zero relief.  The blocks were a test to see if maybe the RFA would be helpful.Nothing helped, the pain was making me insane, it was always on my mind.  Narcotic pain medicine was helpful for a short period by I could not keep up with my building tolerance.Finally I was sent to the Neurologist, ON was diagnosed and Amitriptyline was prescribed.  I'm on 75 mg/day and it took a solid 6 weeks to start getting good relief.  I was at 50 mg for a while, but it was still hard to skip narcotic meds due to pain.It's the first time I've felt like I have my life back in years.  I've been on it for 3 months now.  The dry mouth was bad at first, but it's getting better.  I threw up from it once, but those feelings are long gone now.  At first my sleep was amazing, I'd have a little trouble waking after first getting up, but I always felt rested during the day. The sedating effects are not nearly as strong anymore, and I'm back to getting up at 5 AM again.  However I do sleep all night long anymore,  I don't wake up in the middle of the night like I used to, and I've stopped taking muscle relaxers to sleep and I'm skipping doses of my narcotic pain killers once or twice a day now. The pain was so severe before that I thought I was losing my mind.  Nothing helped and I was starting to feel helpless.  I have scoliosis and kyphosis and it gives me some mid and lower back pain.  I went to Physical Therapy and they didn't really listen to me when I told them the slouching was out of my control (kyphosis), they pretty much took the point that I had bad posture and was out of shape. They pushed me extremely hard and were frustrated that my pain was not getting better.  About 3 weeks into therapy I developed this neck pain.  They continued to push me, most of the pushing being focused on keeping my chin back and my head aligned properly.The thing is,  I wasn't hunched forward at my neck, it was lower down in my upper back that pushed my neck out.   In the attempt to fix   my posture I developed Occipital Neuralgia and it's far far worse then the back pain ever was.  Now, just over three years later it's the first relief I had.I'm glad to hear some folks are benefitted by a nerve block, I was not.
    teknik 1 Replies
    • October 3, 2011
    • 07:28 PM
    • 0
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