Bilateral type1 and 2 Now tenderness at the back of my head, Has anyone seen this before? Having trouble sleeping due to the pain

This is a recent development only a month or 6 weeks old.

I have type 2 on my left side that is a constant companion for the last 20 or so years. I had an MVD on That side in 2006. This was mostly successful.

I have type 1 on my right side that i now understand has been with me from the start but just not as a regular visitor as the left. But when it comes around it makes its self known…

Im on gabapentin, endep, eplim topomax and am maxed out at a fairly low level that i can tolorate and yet keep working.

The new syptom I have is the area at the back of my head above my spine just below where the skull (bone) is, is really really tender. When i lye down to go to sleep i usually only ever sleep on my back as sleeping on either side bring on the TN within hrs if i am lucky and within 10 mins if i am not.

Now when i lye down on my back and have pressure on the back of my head its uncomfortable and quite often it will set off the TN on one or both sides of my face.
This means i am left with no options for sleeping.

I have checked that my spine and the muscles are not tense with massage heat packs and tens machines etc and my neck its self feels loose and comfortable. ( i get stress headaches if its tight)

I went to the GP then the nuro who sent me for an MRI and no issue was found. I am starting the process of moving to another neurologist though as my current one Could not give a S… It feels like.

I am wondering if any on here has had a similar symptoms or have heard of such?

Any suggestions would be great too.

And yes i went out and bought a very good pillow - this has helped


Hi simon. I have dreadful pain at the base of my skull. This is my occipital nerve. I’ve had a nerve block recently which has taken the pain away, it was agony. Hope u r OK today x

Thanks Helen
This gives me something to start my research
My nuro just said nerve damage without going into details.

I have the same pain that causes more TN pain, but especially migraines and hard to turn my head. I get nerve blocks about twice a year and they work wonderfully. A pain specialist does them for me, not my TN neurologist. Good luck!

Thanks Guys

Do you know what this is called? I have heard of Occipital neuralgia But I have no idea if what I am experiencing is even close.

I am trying to do some research on it. The Nuro has said that basically its a Nerve issue and he cant help as the drug levels I am on are at Max levels. His view is if he cant prescribe, why are you in my office????

I would like to know exactly What this is as its new.

Re Nerve Blocks, I have had a procedure similar to a nerve block on my back and that works for 6 or 12 months absolutely great relief. So if a nerve block is available for this then I will go and see my pain specialist and book in.

I just want to be able to get a decent nights sleep. (Oh and have someone cure TN too!!)

I am starting to wonder about the fact I have Bilateral TN type 1 and 2 and now this. Must be an underling cause to all of it rather than a botched root canal or car accident I thought might have been the cause of all of this.

Again thanks for the input.


My neck pain started with car accident many years ago. Got worse with arthritis and then started to affect migraines and TN. Had X-ray, don’t remember what my diagnosis is but something with nerve or disc. All,I know is meds stopped working and blocks work great.

Unfortunately so many conditions that seem to overlap- hard for many of us (and our docs) to figure out what we have.