Combined TN and Occipital Neuralgia

Curious if anyone out there has atypical TN combined with Occipital neuralgia?? I go and get occipital nerve blocks and they do help that part of it...but I was at the pain doc today and something off happened...

When he did the occipital block, I only had a slight burning pain whatsoever. I know these blocks can be painful. I have a hgh tolerance for pain so even the first shot wasn't that bad..But this was was nothing....The doc said he thought it would have hurt more since I have so much pain in my head..But I again said that it did not....

So what I am wondering..since I had no pain, not much sensation with this block..does this mean that the occipital nerve is totally friggen shot as well...apparently like my Trigeminal one???

What are y'alls experiences or takes on this???


Have you ever had an MRI of your neck? I had ON for years. Had several brain MRIs, blocks, meds, but headaches continually got worse.

I have ATN and my ON was so bad that I finally saw a neurosurgeon, Dr. Fraser Henderson in Chevy Chase, MD. Due to my genetic connective tissue disorder, Ehlers Danlos Hypermobility, my skull had moved very slightly off of my spine (Atlantoaxial instability) and I was also turning my head too far to the right (cranio cervical instability). This is what caused my occipital neuralgia and a myriad of other symptoms. ( has great info) So I had a C1/C2 fusion and my ON is gone!

I hope you find your answer!

Take care,

Look at search box here… Put occipital

I too have Occipital and trigeminal neuralgia. Currently I am at my wits end. No one can tell me what is causing it and I know my pain is not being managed and I have to do something. I'm so leary of doctors and don't know who to see. ugh

Have you had an MRI of your neck? I am not implying you will end up with something like me, but sometimes the nerve blocks stop working. So you have to find the source of occipital headaches/ON. Are you seeing a headache specialist?

I hope you find relief soon!

I found this article the most helpful:
Also has info too on treatment options for ON.

My youngest daughter had a successful occipital nerve stimulator implant (until the battery ran out) after numerous hospitalizations. She is showing early signs of TN. I had my greater occipital nerve frozen which was VERY successful until I needed the fusion.

I was seeing a neurologist/pain mgmt doc at the time. He was not the type to “think outside the box”. Thankfully my daughter’s pedi neuro was a headache specialist. I would research treatment options then discuss them with my daughter’s doc since my daughter doc. She was always interested since my daughter and I have such similar genetic/headache/neuro medical issues.

Feel free to PM me. I lived with ON for 35 years until my fusion surgery. Now if only I can figure out TN2!

Hang in there,

I see the head of the Johns Hopkins Headache and Facial Pain clinic. He gave me an MRI and did a thorough exam. There were no compressions. My symptoms are pain on both sides, zaps on my left cheek as if two bare wires were being placed together, and occasional shocks on the left side. He hasn't come to a final diagnosis so I'm ATF for now. He prescribed lamotrigine, 200 mg in the morning and 100 at night. He just added nortriptyline. I start with 10 mg at night and work my way up to 30 mg. It's just been in the past couple months that I have started with headaches. It starts at the base of my neck and works its way up to the top and then eventually covers my whole head. Sometimes it does stop at the top. My insurance company wouldn't cover nerve blocks so my doctor gave me a compound made by the pharmacist. I have to put gloves on to apply it. I've only used it once and it seemed to work. If it works the next time, it might be promising. Are there any medications that are specifically for occipital neuralgia? At the beginning I took tegretol, but the side effects were bad; brain fog (I couldn't comprehend anything I read) and weight gain. Thanks