Recurring Occipital Neuralgia

Occipital headaches are also called cervicogenic headaches. If they are of cervical disc origin there is tenderness when the lower cervical spine is gently palpated. I say gently, because too firm pressure may aggravate the headache. See: https://fibromyalgia001.wordpress.com/article/headache-of-cervical-origin-2qn8r9qkhe4vd-4/

Thank you for your reply. If the Rheumatologists are not interested in us then why the hell does everything I read that asks 'if you have this symptom or that symptom get referred to a Rheumatologist as soon as you can to slow the progression and alleviate some of the pain" ? This is in everything I have read so where are those people that are supposed to help people like us ? Where are these people that could help our children because I know this is hereditary in my family.My Gran,My mum,Me and now My 2 oldest daughters are struggling with pain issues and My son has issues with pain in his neck and shoulder than he puts down he is heavy job.My youngest daughter who is 39 is starting with thumb and big toe pain.I worry for my 6 Granddaughters and now my GREAT-Grandchildren if there is no research into this disease.

@anniebrook My severe headache that I've had for 3 months (pain all over face, jawbones, ears, sides of head, occipital region, neck, upper back, even upper arm pain was diagnosed by my Neurologist as whiplash. It hurt to even lie on either side when sleeping because the slighted pressure on my jaw bone on either side caused immense pain. And I'm a side sleeper.

I told her based on what I've read, I thought she would diagnose me with Occipital Neuralgia. The Neurologist told me they are the same thing. Has anyone else heard this?

I am taking muscle relaxers, myofascial therapy, and she recommends a nerve block. I had a plasma rich protein injection and 2 days later, the pain throughout my head is gone (which is huge) but I still have neck and upper shoulder pain.

Thank you for your reply. If the Rheumatologists are not interested in us then why the hell does everything I read that asks 'if you have this symptom or that symptom get referred to a Rheumatologist as soon as you can to slow the progression and alleviate some of the pain" ? This is in everything I have read so where are those people that are supposed to help people like us ? Where are these people that could help our children because I know this is hereditary in my family.My Gran,My mum,Me and now My 2 oldest daughters are struggling with pain issues and My son has issues with pain in his neck and shoulder than he puts down he is heavy job.My youngest daughter who is 39 is starting with thumb and big toe pain.I worry for my 6 Granddaughters and now my GREAT-Grandchildren if there is no research into this disease.

This is JoJo. I believe a lot of this is hereditary and also comes naturally as you age. I’m 60, so kind of young on the age spectrum. But also from what you did in your teenage years and twenty’s. I played a lot of sports (hit in the head a lot with LaCross). Helped my granddaddy on the farm hauling hay. My back is shot. Minor scoliosis, degenerative disc disease, osteoporosis, osteoarthritis, 4 spots (thoracic and lumbar) this is not bothering me at the moment. My whole neck is compressed with occipital neuralgia on right side, severe stenosis, and bulging disc. I’ve had shots in the occipital nerve that last about 3 months. Now My whole head hurts, neck and upper back and shoulders. Neurosurgeon wants to fuse C1-C-2 with a cage for the stenosis and repair bulging disc. I go to bed in pain and wake up in pain. My orthopedic gave me Duloxitine for nerve pain. It does help. The neurosurgeon was kind of nonchalant about it like no big deal. I do have a lot of medical knowledge and this is a serious surgery. It’s risky and still may not relieve the pain. But the stenosis needs to be fixed if I don’t want to end up in a wheelchair. I’ve put it off because I haven’t found a surgeon that I like. I have 2 beautiful grandsons I help with. I live with my son. But I’ve seen posts of taking a long time to heal and I can’t afford to be out of work that long. And I won’t be able to take care of my 10 month old grandson. I was also a gymnast till I was 18. My body used and abused. I smoked and drank beer. They blame it on that. My mother’s younger sister has same issues with psoriatic arthritis, I have exzema. She said I should see a rheumatologist. I live in SC. They refuse to see me. But in PA where I’m from they will because they’re linking psoriasis and eczema in the same group. And all these specialists want money upfront even though I have insurance. Another reason I’ve put it off. Nothing free here. Before Covid it wasn’t like that. You paid your part after insurance. Anyone else with any answers or suggestions to any of this would be greatly appreciated. I feel for all of you as people don’t realize how painful it is.

This is JoJo. I believe a lot of this is hereditary and also comes naturally as you age. I’m 60, so kind of young on the age spectrum. But also from what you did in your teenage years and twenty’s. I played a lot of sports (hit in the head a lot with LaCross). Helped my granddaddy on the farm hauling hay. My back is shot. Minor scoliosis, degenerative disc disease, osteoporosis, osteoarthritis, 4 spots (thoracic and lumbar) this is not bothering me at the moment. My whole neck is compressed with occipital neuralgia on right side, severe stenosis, and bulging disc. I’ve had shots in the occipital nerve that last about 3 months. Now My whole head hurts, neck and upper back and shoulders. Neurosurgeon wants to fuse C1-C-2 with a cage for the stenosis and repair bulging disc. I go to bed in pain and wake up in pain. My orthopedic gave me Duloxitine for nerve pain. It does help. The neurosurgeon was kind of nonchalant about it like no big deal. I do have a lot of medical knowledge and this is a serious surgery. It’s risky and still may not relieve the pain. But the stenosis needs to be fixed if I don’t want to end up in a wheelchair. I’ve put it off because I haven’t found a surgeon that I like. I have 2 beautiful grandsons I help with. I live with my son. But I’ve seen posts of taking a long time to heal and I can’t afford to be out of work that long. And I won’t be able to take care of my 10 month old grandson. I was also a gymnast till I was 18. My body used and abused. I smoked and drank beer. They blame it on that. My mother’s younger sister has same issues with psoriatic arthritis, I have exzema. She said I should see a rheumatologist. I live in SC. They refuse to see me. But in PA where I’m from they will because they’re linking psoriasis and eczema in the same group. And all these specialists want money upfront even though I have insurance. Another reason I’ve put it off. Nothing free here. Before Covid it wasn’t like that. You paid your part after insurance. Anyone else with any answers or suggestions to any of this would be greatly appreciated. I feel for all of you as people don’t realize how painful it is.

@anniebrook My severe headache that I've had for 3 months (pain all over face, jawbones, ears, sides of head, occipital region, neck, upper back, even upper arm pain was diagnosed by my Neurologist as whiplash. It hurt to even lie on either side when sleeping because the slighted pressure on my jaw bone on either side caused immense pain. And I'm a side sleeper.

I told her based on what I've read, I thought she would diagnose me with Occipital Neuralgia. The Neurologist told me they are the same thing. Has anyone else heard this?

I am taking muscle relaxers, myofascial therapy, and she recommends a nerve block. I had a plasma rich protein injection and 2 days later, the pain throughout my head is gone (which is huge) but I still have neck and upper shoulder pain.