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Headache associated with occipital neuralgia?

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Old 01-08-2016, 02:31 PM   #1
Annamika213
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Default 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!!
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Old 01-09-2016, 11:57 AM   #2
rdkrause
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Default constant headache

I too suffer from a constant headache on the right side on my face. Mine starts right above my right inside edge of my eyebrow and goes around my eye, down the side of my face until the entire side of my face and neck hurt. Some days are better than others. Have tried everything from many different meds and C2-5 bi-lateral nerve blocks. Botox really calms the nerve in my forehead down, however does not last the three months that insurance says it should. If I could push injections up to every two months I would be so much happier. The last three to four weeks before I qualify to have injections again are terrible.
Botox does not take the headache away completely, however, it takes lowers that pain level and helps the nausea to the point where I'm well enough to have some sort of a life. I pair that with PT stretches, deep breathing and diffusing essential oils. Those things help calm me down since this pain has caused such emotional stress in my life that some days, I don't even resemble the person I used to be.
if anyone has has suggestions, I sure would love to hear them.





Quote:
Originally Posted by Annamika213 View Post
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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Old 01-10-2016, 09:19 AM   #3
Annamika213
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Default Responding

Thank you for responding rdkrause. This pain is really becoming unbearable. I completely understand how you are feeling. I am talking with my doctor tomorrow and hopefully we can come up with a new game plan. I am sick and tired of being in pain every day

Quote:
Originally Posted by rdkrause View Post
I too suffer from a constant headache on the right side on my face. Mine starts right above my right inside edge of my eyebrow and goes around my eye, down the side of my face until the entire side of my face and neck hurt. Some days are better than others. Have tried everything from many different meds and C2-5 bi-lateral nerve blocks. Botox really calms the nerve in my forehead down, however does not last the three months that insurance says it should. If I could push injections up to every two months I would be so much happier. The last three to four weeks before I qualify to have injections again are terrible.
Botox does not take the headache away completely, however, it takes lowers that pain level and helps the nausea to the point where I'm well enough to have some sort of a life. I pair that with PT stretches, deep breathing and diffusing essential oils. Those things help calm me down since this pain has caused such emotional stress in my life that some days, I don't even resemble the person I used to be.
if anyone has has suggestions, I sure would love to hear them.
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Old 07-17-2016, 07:11 AM   #4
Pedalspinner
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Default

I would highly recommend finding a neurologist who has experience with occipital induced headaches. If you find one that actually performs the compression release surgical procedure...even better.

There is two doctors of which I would recommend reading about. One at john Hopkins, another at the Cleveland clinic. If u message me, it will remind me to find the links. Occipital decompression surgery along with some other procedures is still relatively new, but gaining recognition for lifetime headache sufferers.
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Old 11-15-2016, 05:43 PM   #5
watchyourtone
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Join Date: Nov 2016
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Default My symptoms...

I suffer from all of these symptoms and more. I've had frontal headaches since November of '91, but these came along in January of '13, just days after my father's passing. Since then, I've had numerous suicide attempts and have been on the pharmaceutical roller coaster ever since. Currently, I'm really at my wit's end and am dealing with these awful symptoms and medication withdrawal effects.

Those that don't experience these rare types of headaches and all of the symptoms that go along with them, really aren't able to understand the amount of suffering that we're dealing with. This would include doctors, but I've recently been referred to the Pain Management Clinic at Stanford Health Care, and these doctors are what gave me a name to my ailment.

These are my symptoms:

Bulging/Sore eyes (both sockets)
Stinging tongue (on top)
Extreme fatigue
Crushing depression
Debilitating anxiety
24/7, second to second racing thoughts (these are in the background as I'm also aware of their presence, forming a mental block that I can't get past). Every thought that I have causes me pain and goes to the nerve area that I'm speaking of.
Extreme changes in body temperature, primarily hot (heat emanating from the throbbing area in the left base of my head. This is felt even more when I am laying down).
Dull pain is almost all of the left back side of my body (although it's starting to spread to the right side of my head).

Can anyone provide me with methods or procedures that may assist me?
Thank you...

Quote:
Originally Posted by Annamika213 View Post
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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Old 08-24-2019, 07:14 PM   #6
ErichWynn
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Default Nam,e of Doctors

I have an appointment at Johns Hopkins for Occipital Neuralgia
Who are the Doctors that you are referencing

Thanks for your help

I am in Dallas Texas
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