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Occipital neuralgia headache, easing pain?

Posted , 7 users are following.

Annamika213
Annamika213

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!!

0 likes, 6 replies

6 Replies

  • rohit19035
    rohit19035 Annamika213

    Posted

    Hi Annamika,

    can you provide more information on symptoms during the headache like if running nose, watering eyes, always one side of the head/face, time of the day (if it disturbs the sleep cycles) ?

    Regards,

    Rohit

  • Hollyberry
    Hollyberry Annamika213

    Posted

    After several hospital visits, GP visit I saw a chiropractor who diagnosed in minutes what is wrong with me and from your description and her explanation to me I think you have the same problem but the next nerves along are affected. She explained to me where the muscles  are knotted up in my shoulders and they then lock in place, pinching nerves and blood vessels. I get my pain over the top of my head, in 2 lines between the top of my head and top of my ears, going from base of my neck to my forehead ( and even down into my eye sockets at time) 

    If I had the next nerves along affected the pain would travel from my navy/ base of skull, over my ears to my eye sockets.

    ive also suffered migraines for 40+ years and that's what the Drs saw, and didn't want to investigate further.

    one more question, do you have a clicky jaw? My chiro says that clicky jaw often goes with neck problems. 

    Might be worth you seeing a good chiropractor. 

  • Annamika213
    Annamika213

    Posted

    Thank you for the responses!

    Rohit- My headaches are always on the right side of my head/face. They start at the base of my skull on the right side, and move up and above/around my right ear to my front temple by my eye. I can feel exactly where it is, it feels like someone is stabbing that area and just letting it sit there. For the past 3 weeks it has been a constant pain, it moves around that area, but the pain is always there, whether is it at the back/base of my head, above my ear, or by my front temple, there is always pain. It varies from a horrible pain that that I can’t stand, to something that I can work and tolerate. When it is really bad, I am sensitive to light, and I do get nauseous. Usually is it just the pain, no other symptoms. I do have very bad neck pain that is always there also. The neck pain is also at the base of my neck on the right side, it feels like the headache starts from there. I also have pain on my left side of my neck but that is not giving me headaches on the left side, just pain.

    Hollyberry- What you described does sound a lot like what I am experiencing. I am trying to find a good chiropractor that might be able to help, I tired one that specialized in “neurology” but he was no help at all. I am also going to try and get massage and see if that helps. I am to the point that I will try anything to get some relief. This pain is starting to take over my life.

    Thank you again for your insight!

  • sharlene707
    sharlene707 Annamika213

    Posted

    Hi Anna, Every single thing that is going on with you is exactly what is going on with me. Even on the right side. I had surgery which left me with this horrible pain. Every day and night. Constant. Had CT Scan, MRI, only to be told hmmm we do not know what's going on. Realllllyyyyyy???? I am now on Trammodol 50mg 4 times a day. I have a friend whof kept on trying to get me to see chiropractor. I have went so far 3 times. I am still in pain. I pray so much and ask others to pray. I am now telling myself I am getting better. But, my headaches tell me (no). I hope you have finally gotten some kind of relief from your pain. Please keep me up dated and I will you. If it is any comfort at least there is someone going through the same pain as you.

    • ibrahim57343
      ibrahim57343 sharlene707

      Posted

      Hi everyone

      Hope everyone found some sort of relief from this horrible pain

      Ive been haveing it since 5 weeks after a head injury, behind my skull burns and feeling like pins and needels stuck there

      Comes towards my left tempel cheeks constant acheing and burning feeling

      My gp put me on some meds dont really help

      This had ruined my life iam 32 and stuck in bed for 5 months

      Any advice or help i would be very pleased treatments ?

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