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Headache associated with Occipital Neuralgia?

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!!
4 Responses
Avatar universal
I get occipital neuralgia migraines too. Usually last 4-6 days. Today I am on day 2 on the left side behind my ear. Sharp stabbing pain that last a second or two, sporadic and tenderness in the same area like someones been pulling my hair all day also  pain and tenderness going down my neck. Sometimes it sort of travels to the back of my head, up towards the top and sometimes my eyes hurt, like today and it kinda feels like my head is pressurized. Even when the stabbing pain is not happening, it still doesnt feel right. I have taken everything I could think of and my dr has given me scripts for migraine meds but they dont work. I actually diagnosed myself after doing alot of research on different types of headaches. I printed out my fact based evidence and gave it to my dr. I was prescribed gabapentin. I usually take 300mg 4 times a day. Ive only just started this medication. Actually started taking it after my dx on like day 5 of my last episode. So yesterday I started 100mg 3x a day and 300mg at night, today Im going with 300 4x a day. It had lessened a bit today and Im hoping its gone when I wake up tomorrow. Also my daughter massaged the area and also down that side of my neck. That did help a bit. After that she applied icyhot to my neck area. I was able to fall asleep.
Best of luck to you :D
Avatar universal
I have had 4 neck surgeries in the past ten years. The last one was Just 2 weeks ago. I had a neurostimulator removed because it was not working anymore, and I need an MRI of a tumor in my breast that they have been following and it has grown, and there is also a new one. It is very close to the chest wall so the gammagrams, mamagrams, and ultrasounds werent good enough, and a biopsy would be very invasive. Prior to the last surgery I noticed I was getting severe pain on my scalp when I touched my hair on the back of the left side of my head. It was worse after the surgery and i ended up in the ER as the pain was now also shooting stabbing pains at the crown o my head on the same side. They diagnosed my with Occipital Neuralgia and started me on 300mg of neurontin 3x a day. it does nothing other than make me nauseous and dizzy as hell. Has anyone found anything that works for this pain?
Avatar universal
I was diagnosed with occipital neuralgia 2 years ago and the one thing that has helped me is to have the nerves in my neck cauterized.  I have had this do twice and it does give me relief from the pain. The procedure can be repeated every 6 months and it's not terribly painful.  The nerves do regenerate and the pain returns but right now the pain is not bad. Along with the nerve cauterization, I take gabapentin 3 times a day and so far so good.
I hope this information helps.
Avatar universal
I have read your post. I have been diagnosed with occipital  neuralgia and have many of the same symptoms as you. I was wondering how you are doing and I you found anything that worked?
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