Occipital Neuralgia

Posted by jmb73 @jmb73, Sep 11, 2019

I have been having headaches on one side of my head and have recently been diagnosed with occipital neuralgia. They recommend a nerve bloc but I wonder anyone else has this and how they handle it.. I don’t want a nerve bloc. The headaches are usually mild but occasionally the pain wakes me up. They got worse after I had my Gamma surgery. Any ideas would be appreciated. Thank you.

I have it. It actually got better and stayed better for years and then I had surgery to remove my uterus. As soon as I woke up I asked for pain meds because my head hurt so bad. And then it stayed that way for a year. Now it just hurts when it gets aggravated by being touched. I suspect the base of my head was resting on something during surgery and that is why it came back after surgery.
I believe my ON was caused by a fall off a horse.

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@jmb73 @bumble81 I also get occipital headaches that happen on the back of my head on one side. For me it is a physical problem that is caused by a slight misalignment of the upper cervical vertebrae, usually C1 & C2 that are caused by muscle spasms in my neck. Essentially, when the the skull doesn't sit correctly on top of the spine, it causes the muscles on the back of the head to complain. I had a whiplash 20 years ago, and had muscles spasms ever since that, and eventually spine surgery for a ruptured C5/C6, and now after surgery, the muscle spasms are infrequent and my neck is maintaining the correct curvature alignment. I had a lot of cervicogenic headaches prior to spine surgery.

A physical therapist who is knowledgeble with spine surgery rehab can probably help this type of issue. The best advice is to first evaluate with a specialist for any instability at the upper cervical vertebrae and skull. No one should attempt to realign anything in the spine if there is instability because it causes slippage of vertebrae past each other and can be very serious if that happens right under the skull and effects the spinal cord. If things are stable, then a physical therapist can work on the problem. A PT should always insist of imaging and an evaluation first before they do any work on a patient, or they can risk injuring the patient.

I can still trigger a slight issue that causes independent rotation of C1 and C2 if I sleep wrong or get a neck/shoulder spasm from overexertion. I am a lot more aware of this now from working with my physical therapist. I can also stop the spasm when it starts by bracing one arm and pushing my head back toward that side that hurts against resistance from my other arm. The reason that works is because there is a muscle that connects C1 and the spine and the other end connects to the shoulder blade. So when I brace my arm, I am stopping the shoulder blade from moving at that end of the muscle, so the muscle can pull against the resistance and move the other end which is attached to the side C1 which rotates C1 back in place. That is my body's pattern and yours may be different. Working with a physical therapist can really help.

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I was diagnosed with Occipital Neuralgia. Along with that came cervicogenic headache, spondylosis then later chronic migraine diagnosis. I was never totally convinced that ON was accurate but I did know the pain brought me to tears and I used to tell my husband there was evil living inside my head! Pressure inside and tenderness on the outside. I could not lay on a soft pillow and would have to sleep upright in my recliner with my head gently resting against ice until it was completely numb. I was desperate for help so I went for the greater and lesser occipital nerve block followed by radio frequency ablations. I received sufficient relief and continued for 2 years. I also had the same procedures on my neck C3-C7. In the end I began having less relief and more pain to convince me something else was going on or they just weren't working anymore. Turns out I was also diagnosed with Small Fiber Neuropathy shortly there after. Kind of a mixed bag regarding nerves and common areas of interest. Only you can decide if its the right procedure for you and I wish you all the best. Feel free to ask if you would like to know any more about the procedures.

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Thank you all for your advice and explanations of your ON. I truly never thought it could be related to my spine. So far it's bearable. I will keep your suggestions in mind if it gets worse. Thanks again. Joan

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Is this the correct forum to discuss ON?

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@wa34937

Is this the correct forum to discuss ON?

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Hi @wa34937, I moved your message to this discussion about Occipital Neuralgia in the Brain & Nervous System group so that you can connect with @jmb73 @bumble81 @jenniferhunter @rwinney @eifeltower @jlfisher56 and others with ON.

Wa, is this a recent diagnosis for you? What sypmtoms do you experience and what treatments are you considering?

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ON came crashing down on my wife second week of June, so much pain I thought she was going to faint. Walk in clinics, family doc, then ER for a Cat Scan, refused to give her a nerve block in the ER (new world of medicine I guess) waited two weeks to get a block which didn't help right away. Doing physical therapy, SLOWLY her intense pain subsided. We're hoping she's turned the corner finally, getting a second block this week. This is a terrible condition.

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Hello, are your symptoms positional? I have something similar but it only takes place when I lie down and then for the rest of the night. The pain is very, very intense and I'm conscious of it the entire time I'm sleeping. When I get up it begins to wear off and can take close to an hour. But it is only on one side, only positional, and centered just above and around the top of my ear. If I touch my ear at the point of attachment to my head, that really hurts and even if I turn my head I reproduce that pain in my ear. Thank you so much for sharing your story
and I wish you all the best, Sunnyflower

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I was diagnosed with occipital neuralgia a few years ago, but until fairly recently, it was bearable. In the last few months, the headaches would usually show up late afternoon for some reason. Put me down for the count quite a few times. Contacted my family doctor and he arranged appt with Pain Management Group, which upon further investigation, probably meant periodic injections. Read up on it, and after some research, decided to try a chiropractor. I have been going for a few weeks, and must say I have only had 1 headache in that time, so something is definitely working. Get a slight “pulling feeling”, but very bearable. Just an option to consider.

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Hello fellow headache sufferers. I’ve been getting what feels like ice pick headaches for approximately 20 years. When I first started getting them ibuprofen would work. My headaches would last a few days. I would get them sporadically, sometimes not for years. About six years ago I started getting them again. I brought this up to my DDS and he thought maybe it could due to clenching my teeth. He fit me with a mouth guard, no headaches for years. Well my headaches resurfaced about a year ago. I’ve had three severe bouts in the past year. I have a new PCP and he’s diagnosed me with Trigeminal Neuralgia. What I’m reading here sounds more like I might have occipital neuralgia. My headaches start on one side of my skull and slowly work their way up to almost the top of my skull. They happen on either one side or the other. The area affected is tender to touch. Even brushing my hair in the area is painful. I’ve had an injection in my next about two years ago by my pain mgm doc, have issues with my C1 & C2. I got my latest ice pick headache three days ago and it’s still going strong. The pain can be so debilitating! I have an appt with a new neurologist next month. My former neurologist never really diagnosed my headaches plus she closed her practice without notifying her patients. 😬. Maybe I should reach out to my pain mgm doc for an evaluation and diagnosis? Appreciate any feedback. It sounds more like ON than TN which may be why the meds (Carbamazepine 100 MG 2 x day) my PCP has me taking aren’t helping with the pain away. Thanks!

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@mattie77

Hello fellow headache sufferers. I’ve been getting what feels like ice pick headaches for approximately 20 years. When I first started getting them ibuprofen would work. My headaches would last a few days. I would get them sporadically, sometimes not for years. About six years ago I started getting them again. I brought this up to my DDS and he thought maybe it could due to clenching my teeth. He fit me with a mouth guard, no headaches for years. Well my headaches resurfaced about a year ago. I’ve had three severe bouts in the past year. I have a new PCP and he’s diagnosed me with Trigeminal Neuralgia. What I’m reading here sounds more like I might have occipital neuralgia. My headaches start on one side of my skull and slowly work their way up to almost the top of my skull. They happen on either one side or the other. The area affected is tender to touch. Even brushing my hair in the area is painful. I’ve had an injection in my next about two years ago by my pain mgm doc, have issues with my C1 & C2. I got my latest ice pick headache three days ago and it’s still going strong. The pain can be so debilitating! I have an appt with a new neurologist next month. My former neurologist never really diagnosed my headaches plus she closed her practice without notifying her patients. 😬. Maybe I should reach out to my pain mgm doc for an evaluation and diagnosis? Appreciate any feedback. It sounds more like ON than TN which may be why the meds (Carbamazepine 100 MG 2 x day) my PCP has me taking aren’t helping with the pain away. Thanks!

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@mattie77 What kind of issues do you have with C1 & C2? That can be the source of your headaches. I am a cervical spine surgery patient and I used to get bad occipital headaches and vertigo that happened when C1 & C2 were rotated or tilted. My muscle spasms calmed down after I had a C5/C6 fusion. I also have thoracic outlet syndrome (TOS) that makes my neck and chest tighter on one side, and I suspect that is why my vertebrae will rotate on their own. Physical therapy has helped a lot. My PT could get my vertebrae realigned with the proper curve again which relieves pain except for the affected disc. You may want to look at our discussion on MFR or myofascial release. These other links may be of interest too.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
https://mskneurology.com/how-truly-treat-thoracic-outlet-syndrome/
https://mskneurology.com/vestibular-impairment-and-its-association-to-the-neck-and-tmj/
https://mskneurology.com/atlas-joint-instability-causes-consequences-solutions/
https://mskneurology.com/true-cause-solution-temporomandibular-dysfunction-tmd/

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I"ve had O.N. for 3 years. The episodes last anywhere from 14 days to 34 days. The pain is a 9 out of 10 and it's fairly constant. They happen approximately every 3 months. I"ve had all the injections except Botox. I have 2 more sets of those. Then that will be the end of the medical therapies. I can't tolerate any useful medications. Next will come the surgeries, but I'm desperate. I'd love to hear from someone who has had Occipital release surgery.

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