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occipital neuralgia, pain management, headaches?

annamika213aannamika213 Posts: 5
edited 01/07/2016 - 10:52 AM in Neck Pain: Cervical
Hello, I apologize that this post is so long, but i wanted to give a little background for my issue. I really really appreciate any input anyone can give me!
I have had horrible migraines for 10+ years which have become chronic daily headaches, manageable, but daily. A year ago I started having horrible pains at the base of my skull on the right side, some days it is a horrible stabbing pain, some days it is just a dull ache, but it is always there. I saw my neurologist in May about the pain since it just would not go away, she really had no ideas for me, she thought it might be a pinched nerve but said she really didn't know, she started me on nortriptyline, after being on the nortriptyline for 2 months and no change, she switched me to gabapentin, I am now taking 1200mg 3 times a day. Some days I notice a difference, other days no change at all. My Neurologist said to stay on it and it should be helping. About 3 months ago the same type of pain started on the left side of my neck, about 1.5 inches below the base of my skull, closer to the middle by the spinal cord than the outside of the neck, it felt like a muscle knot that wouldn't go away, for the first few weeks, thinking it was a muscle knot, I was trying everything to get the knot to go away, after no relief with heat, massage, ice, I saw my neurologist and basically demanded that we get an MRI to see what was going on, she said she didn't think that was necessary, but ordered it anyway. She said my MRI looked totally fine and that i should still stay on the gabapentin, but no more help than that. After that I decided to find a different doctor. I started seeing a physiatrist, specializing in neurologic issues. My first appointment with him was fantastic, right away he said from everything i am describing i have occipital neuralgia. He explained what it was, and that it is a tricky thing to get under control, and he really couldn't say what is causing it. He said that the gabapentin is what he would prescribe, and it probably is helping, just not taking the pain away totally. He did prescribe a cream to apply to my neck, that he said he has great results with. He said he likes to try this first before doing any injections. It is a special compound cream that is specially made at a pharmacy he uses, its a mix of baclofen, gabapentin, ketorolac, and lidocane. Its hard to tell if the cream is working, kind of like the gabapentin, sometimes it feels great, other times the pain is the same...

My true issue and reason for posting is, I have had a bad headache on the right side of my head, it moves from the right base of my neck, around my ear to my front temple area. Throughout the day it is in a different spot and I can pinpoint exactly where it is, it feels like someone is stabbing a knife right in that area, but it lasts for hours, throughout the day it does get a little "better", but i can always feel it, when it gets "better" it just feels like a massive pressure in that area. I have been a headache sufferer for as long as i can remember, but this headache is different than any headache I've ever had, and it going on day 19. I have tried everything; my many different headache medications (including an injection i give myself), I've taken a dose pac of steroids along with come anti nausea medication my neurologist gave me, i have gone to get a DHE treatment from my neurologist, i have gotten a torodal shot, and pretty much anything else i could think of, and nothing is kicking this headache. After doing lots and lots of online research, it leads me to believe that this is related to my occipital neuralgia, not a "normal" headache. Has anyone has a headache like this before? Do you think it is related to the occipital neuralgia, or something else? Does anyone have any ideas to make it go away. Also, if anyone has any tips on dealing/treating neck pain from occipital neuralgia, i would appreciate that too!! I am just really hoping for some relief from this headache, more than just a few hours of it feeling "better". thank you so much to anyone who had any input!!


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  • Robbie43RRobbie43 Posts: 18
    edited 01/08/2016 - 3:41 PM
    Your pain is a lot simular to mine. Although mine is not stabbing , electricity pain. That's how they describe ON.
    Mine is more dull ache. I'll cut and paste so I'm not writing it all out again for you.

    On the 24th February 2014 I made an appointment with a local osteopath for a 1mm tear in my elbow tendon (tennis elbow).
    The osteopath massaged my arms etc then continued to unwilling talk me into a neck munipulation to my upper neck. He sat me on my back and "adjusted" my neck to the left. I heard loud cracks at the time of the munipulation.( 1st ever munipulation ) He sat me up and told me to go home and ice my neck ( which I did ). At the time there was no pain what so ever. For some reason he didn't manipulate my neck to the right, which I thought was strange.
    3-4 days past and with no problems what so ever. On the 4th night at about 3am I woke up in enormous amount of neck pain and a massive headache. My neck hurt enormously, I couldn't turn my neck to the left, but to the right was ok. It was sore to touch in the c2 right side as well. I COULD ACTAULLY FEEL MY C2 twisted to the right. The c2 was actually buldging out. The pain lasted about a week with super bad headaches on the right side. I had full straight headaches 24/7, also my face was warm and very red and had a feeling of warm water always pouring out my right ear (for the first 6 months). After the first week my neck pain subsided. I could turn my neck left or right with no pain what so ever. It's been 1 year and 9 months since That manipulation. Gradually after those first 6 months now Every morning starts off fine. About midday I start to get a pressure/tight feeling in my c2 right side area, it doesn't hurt, just feels a slight pressure and a little tight. From there the pain shoots up into the right side of the back of my head. I feel pain on top of my head a short time later (right side), Then after an hour longer this turns into a full on headache/ miagraine. About once every 2-3 months I don't have a headache at all for a day, My neck feels good with no pressure build up at all in the c2 area. But sure enough, the headaches return in their very own pattern once again. The longest I've gone with no headaches or neck pain was about 10 days. This was about 9 months after the incident ( no treatment. Had gone for no reason). The headaches come with no reason at all. It doesn't matter if I'm working or not working. Resting or not resting, the headaches are there. Since June 2014 I started getting pvc's( heart palpitations). Since December 2014 I haven't worked at all. That's when late December 2014 I got appendicitis out of nowhere, my bowels become inflamed and now I have been told I have crohns decease. Before my munipulation I was fit and strong. 90kg ( 200pnds) now I am 77kg ( 170pnds). My daily headaches continue. I never get headaches on the left side. The headache always starts off from the right then turns into a front headache as the day progesses.

    This is a list of treatments I've tried. And dates roughly when I received them. Note that I didnt get any scans or test until after 3 months after the incident.

    X-ray 20/4/2014
    Mri 20/9/2014
    Special mri ( pin point pain area then scanned ) 20/11/2014
    Ct 20/10/2014
    Ct in hospital with dye. 2/10/2014

    All scans came back ok.

    Seen a pain management doctor and have I received

    - nerve block in office to the occipital nerve.
    - sent out for c2/c3 and c3/c4 facet injection.
    None of them helped what so ever.

    I've tried physio
    Dry needling
    Remedial massage
    Chiro with about 30 neck munipulation.

    The dry needling aggravated my headaches as well as the remedial massages. The chiro neck munipulation made me feel foggy for days after but didn't help or aggravate the headache at all.

    I've also seen 2 neurologist who have had no idea what is going on. They have tried me on lyrica, topamax ( topiramate ), prednisone , Celebrex and Amitriptyline which have not helped at all either. I've also tried a migraine abort drug. tried them for 3 months. I have also tried prednisone for 2 months on a strong dose of 40mg and tapering, with no help as well.

    Also note, prior to this I have never had any neck trouble, pain or injuries what so ever in my life. I've never had a neck headache or a headache from the back of my head in my life. About once a year I'd get a headache behind my eyes from being in the sun all day, that was it.

    That's pretty much my story. Have you had any injuries ever to your neck or head? Mine is all related to that osteo who cracked my neck. You could try see a pain specialist. They do some nerve blocks into your facet joints. It will help them see where the source of pain is coming from as well. I have tried a lot. I'm pretty much just living in hell now. Nearly given up. I have my doctor wanting to do a medial branch block soon. Ask your pain specialist about that as well. ( facet and medial branch blocks) .
    Good luck

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  • The nerve block they do in the office are different to the ones they do in a MRI/ X-ray ( what ever ) machine.
    They can inject straight into your nerves going over the back of your head in the office. But they need that machine to do it further down near the neck. Your pain specialist is really your next bet. I've seen 3 neurologist who have had no idea what so ever. Just wanted to give me all these drugs.
  • Thank you for sharing your story Robbie43. Our stories seem very similar. I have not had any injuries to my neck, but i did have Chiari Malformation decompression surgery in Februray of 2013. It was done directly on the back of my neck at the base of my skull. I have had several MRI scans after the surgery, and they all came back OK. My neck/head pain started about a year and a half after the surgery. I'm starting to think that the Chiari surgery has something to do with my occipital neuralgia (ON), and the pain i am having now. The doctor that i am seeing now is a physiatrist who deals with pain management. My neurologist didnt have any idea what was going and just kept pushing pills, and she was a headache specialist! When i saw my physiatrist last he gave me this cream that he said he has had great results with, it helps a little, but not even close to taking the pain away. He said the next thing we would do would be a nerve block. I dont know if it would be in his office, or done with X-ray. I am calling him tomorrow to go over my next step options, and hopefully set up a nerve block appt.
  • I unfortunately have done major damage to my neck & have spinal stenosis, degenerative disc disease & Rheumatoud Arthritis. I blew the C4/5 discs 26 yrs ago and by 1997 C4-7 were all involved. I spent a lot of years seeing neurologist, who are worthless when it comes to this condition.

    Migraines from neck pain caused high blood pressure. I've taken multiple series of meds, injections, my chiropractor has normally been my saving grace by realigning vertebrae though it only lasts a day or 2.. Yup I've had MRI, myelograms, massage and a bag full of coping strategies I employ daily. I've seen enough docs and often know more than they do. I'm a very educated person and refuse to be passed over by someone who sees me 15 min. My family doc & I have an awesome working relationship & when he sends me to a specialist, he calls them personally and It has made a huge difference in treatment.

    In 2008 I had to have my L1-S1 fused. The procedure had to be done immediately as paralysis of my right leg greeted me one morning as I woke.

    I used my docs Orthopedic Surgeon..
    At a follow up he told me he was more surprised I didn't already have my neck fused and with the current damage he was amazed I was even functioning. We discussed what I was doing to delay that surgery & why.

    2011 I had issues swallowing & shoulder pain on the left. Rheumatologist sent me for a full MRI brain all the way down with contrast. Lots of grumpy nerves in neck. Saw surgeon, he sent me for swallowing tests, but in office he measured how far I could look left..... 45degree angle from shoulder & my face would go numb. He had me look up to the wall ceiling juncture & migraine would start. He had to give me an injection of anti nausea/ pain meds. Told me I had ON and he'd rank it severe.

    We were looking at surgery, got swallow tests back needed some other items done and , I got t boned by a taxi.
    His fault, but due to my existing problems not defendable injury wise in court.

    Insurance suddenly pulled surgery authorization and required me to back up 20 yrs to treatments we already knew wouldn't do any good. PT, injections, adjustments, rest, ice, meds. My parents health deteriorated shortly after and in 18mo they were gone. I put myself on the back burner.

    Today, I can't look left at all without stabbing pain in my neck & eye, nausea, instant migraine & facial numbness. Looking up? Only if you want me to pass out. My regular doc became concerned last Aug and started me on Gralise (slow release of Gapentin) & muscle relaxers to try and get nerves & muscles to calm down . Oct we did injections with MRI guidance, and report came back that pathway is blocked. By Dec with extensive tests, Doc referred me for C1-T1 fusion. My Orthopedic Surgeon (docs doc) doesn't do that many levels & has brought in a team of colleagues to map out this surgery. I find out their approach on Thursday.

    I didn't know RA attacks the occipital area until a few weeks ago, but by then it was too late.

    I waited for surgery because 26yrs ago, even 15yrs ago the surgical response didn't have the success rate it does now.
    If I had it to do all over, I would have had C4/5 fixed before the rest had a chance to destabilize & blow
    . I would of seen an orthopedic sports med doc instead of neurologist, utilized gabapentin earlier, and not done neck injections.
    The things I did right:
    - fire neurologist
    - come off the cocktail of pain meds. Pain meds don't do anything for nerve pain. I treat nerve pain with medicine for nerve pain.
    - use chiropractor for adjustments to realign vertebrae and slow down ON

    It is the ON that is sending me to surgery because I waited too long. Be proactive, be educated, & pick docs wisely.

    Good luck
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  • thank you for your response wizardrose! I cant believe all of the hurdles you have had to go through!! I feel for you, but cant imagine all of that! I like the doctor that I am working with now, and hope that continues! As I was just recently diagnosed with ON, I am still in the early stages on treatment, but an really hoping that we find something that helps soon! The pain that I have on a daily basis is starting to take over my life and I cant stand it anymore!
  • It's a horrible thing to experience. I even get a sharp stabbing pain in my eye. I just did an occipital nerve block for this and it has helped. Also, the medicine that has helped the headaches for me the most is Valium. For me the ON is caused by severe neck muscle spasms from my injury and neck fusion surgery, and muscle relaxers help relax the muscles that are pinching the occipital nerves. Might be some thing worth talking to your doctor about. When I take Valium (2mg) regularly like every 6-8 hours I can keep the ON headaches at bay. Since the occipital nerve block, I haven't had any Valium in 12 days, so huge progress!
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