1. < Brain & Nervous System

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.

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authorchris | @authorchris | Jul 29, 2021
In reply to @soledad02 "Hello fellow headache sufferers. I’ve been getting what feels like ice pick headaches for approximately 20..." + (show)
@soledad02

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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I definitely have ON - diagnosed with nerve blocks by a pain mgmt doc, a neurologist, and a physical medicine doc. The nerve blocks helped only as long as the lidocaine lasted - about 6 hrs. Then the pain came flooding back - as it does for about a month at a time. I then experience relief for a couple of months, and back it comes. Has continued this pattern for more than 3 years. I've tried everything - most recently Botox. Nothing relieves the pain except morphine sulfate - not accupuncture, massage, physical therapy, chiropractic, medications (I'm intolerant to all of them!). I'm seeing a neurosurgeon in a few weeks to discuss possible procedures - either occipital release surgery or electrostimulation implant. Would love to hear from someone who has had either of these.

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wa34937 | @wa34937 | Jul 30, 2021

In the second year of ON, nerve blocs showing diminishing results to relieve severe pain for my wife. Her pain mgt MD is suggesting laser treatment of the nerve as an indicator of the potential success of a Rhizotomy (destruction of joint nerve) He also prescribed Lyrica. She's in PT and getting regular chiropractic treatments. Her pain is severe causing her to take over 2000mg Motrin daily (which her MD nixed yesterday). We are wondering if anyone has issues with Lyrica and success with nerve destruction? In addition she is scheduled to see a neurologist specializing in headaches.

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sickofbeinsick1. AKA Tina | @sickofbeinsick1 | Aug 12, 2021
In reply to @soledad02 "Hello fellow headache sufferers. I’ve been getting what feels like ice pick headaches for approximately 20..." + (show)
@soledad02

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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It sounds more like arteritis…you stated that brushing your hair can set one off. ON is more like a nerve issue (that’s what I was told) . I have completely desiccated discs C-3 thru 7. I call them my right side headaches…they’re coming more frequently & lasting longer…the last one was 5 days

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lisa2022 | @lisa2022 | Jan 31, 2022
In reply to @soledad02 "Hello fellow headache sufferers. I’ve been getting what feels like ice pick headaches for approximately 20..." + (show)
@soledad02

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!

Jump to this post

I too have very similar problem, pain in the back of my head when laying down and I cannot wear glasses because it hurts behind my ears. I took carbamazepine also... did not work and I'm not willing to up it , due to side affects. I was misdiagnosed with trigeminal neuralgia. I am still seeking help for occipital neuralgia... cervical head aches... I now have spasming in the back of my head now. If you got any answers would love to know. And hope you are felling better.

REPLY
1 reply
Soledad02 | @soledad02 | Jan 31, 2022
In reply to @lisa2022 "I too have very similar problem, pain in the back of my head when laying down..." + (show)
@lisa2022

I too have very similar problem, pain in the back of my head when laying down and I cannot wear glasses because it hurts behind my ears. I took carbamazepine also... did not work and I'm not willing to up it , due to side affects. I was misdiagnosed with trigeminal neuralgia. I am still seeking help for occipital neuralgia... cervical head aches... I now have spasming in the back of my head now. If you got any answers would love to know. And hope you are felling better.

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Hi. Sorry to hear of your many issues. I went to my pain management doctor shortly after I posted this. He diagnosed me with occipital neuralgia and gave me a nerve block in my skull around the area of my pain. I then went to a neurologist shortly after that and she diagnosed me with stabbing headaches. She prescribed Ketorolac, 10 mg. which I didn’t take as I believe the injections did the trick. I’m very thankful my headaches didn’t return after the injections. Note: I went to my neurologist as a back up in case the headaches returned. You you might want to see about nerve blocks. The pain I experienced was horrific!

REPLY
marylynn13 | @marylynn13 | Jan 31, 2022
In reply to @soledad02 "Hello fellow headache sufferers. I’ve been getting what feels like ice pick headaches for approximately 20..." + (show)
@soledad02

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!

Jump to this post

I have tribe links neuralgia and occipital neuralgia. Botox and radio ablation helped me a lot. My etiology is small fiber neuropathy so while I have a small amount of large fiber i.e. spinal impinge ment the main problem is the small nerve fiber are degrading.

REPLY
1 reply
mkparma | @mkparma | Feb 11, 2022
In reply to @colleenyoung "Hi @wa34937, I moved your message to this discussion about Occipital Neuralgia in the Brain &..." + (show)
@colleenyoung

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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Hi Colleen,
Would you mind showing me that group? I’ve had ON for two years straight now and it’s getting increasingly worse. I’d love to connect with others to see what works for them.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Feb 12, 2022
In reply to @mkparma "Hi Colleen, Would you mind showing me that group? I’ve had ON for two years straight..." + (show)
@mkparma

Hi Colleen,
Would you mind showing me that group? I’ve had ON for two years straight now and it’s getting increasingly worse. I’d love to connect with others to see what works for them.

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Hi @wa34937 - if you click the View & Reply button at the bottom of this email notification, it will take you to the ON discussion where Colleen moved your post. Then just scroll to the top and you can see the discussion description and posts made by other members.

REPLY
1 reply
mkparma | @mkparma | Feb 12, 2022
In reply to @johnbishop "Hi @wa34937 - if you click the View & Reply button at the bottom of this..." + (show)
@johnbishop

Hi @wa34937 - if you click the View & Reply button at the bottom of this email notification, it will take you to the ON discussion where Colleen moved your post. Then just scroll to the top and you can see the discussion description and posts made by other members.

Jump to this post

Thanks!!

REPLY
lisa2022 | @lisa2022 | Jun 26, 2022
In reply to @marylynn13 "I have tribe links neuralgia and occipital neuralgia. Botox and radio ablation helped me a lot...." + (show)
@marylynn13

I have tribe links neuralgia and occipital neuralgia. Botox and radio ablation helped me a lot. My etiology is small fiber neuropathy so while I have a small amount of large fiber i.e. spinal impinge ment the main problem is the small nerve fiber are degrading.

Jump to this post

Marylynn... I see you stated that you had Botox AND an ablation.. I am still suffering. I did a nerve ablation of c1,c2,c3,c4 three weeks ago and have not seen any improvement. I have both occipital nerve pain when lying down and face and jaw pain, so trigeminal neuralgia too. I have only hade Botox for neck spasming, but now want to try it for the trigeminal neuralgia pain. Do you or anyone reading this know if someone at Mayo will inject for TN? I have read that they can inject the "zygomatic arch" .. I have horrible pain in the right side of my head. "temporalis muscles" and I want to have these areas injected before I resort to anticonvulsants. ( I have to drive and function at a high level) I have something wrong with my neck and its not plainly visible on an MRI,( just age related disc degeneration) ultimately I would like to find a doctor who can find out what structurally is causing this pain. AND FIX IT.

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