Any other sufferers with Occipital Neuralgia?

[OccipitalPain]

2.5 years and counting and still waiting for a referral to a neurologist. I'm in so much pain it's unbelievable. My head. My eyes.

Has anybody else had this and did anything help you?

I'm on a low dose of amitriptyline but it isn't working anymore 😔

Word finding! That’s the phrase I should use! Now to just remember it 😆😩

I struggle with word finding at the best of times so god knows how ill be able to string a sentence together on that, you poor woman that sounds so frustrating.

That being said its a difficult one isn't it? You're either in pain constantly or dealing with med side effects so it's a toss up between which you can tolerate better.

I was quite fortunate with noritryptiline in that it worked super quickly (when it did bloody word) and I didnt have many side effects, but the GP said I may well get some worsening side effects as I up the dose. I think, like you, I would probably opt to tolerate the side effects as opposed to being in pain.

I'm going to start the 30mg tomorrow and hope for the best.

My upper back is absolutely killing me today I don't know whether that's due to the O.N or the TMD I have. God its miserable!

10mg is essentially a starting dose of amitriptyline and 20mg is also a very low dose. I would certainly speak to the GP about titrating this higher. The dosing for for nerve pain can go up to 75mg (or beyond in certain conditions) so the doses you've trialled are low and I'd not expect them to yield best results. Alternatively you could ask for a switch to Gabapentin which might prove more helpful.

Nerve blocks didn't work for me.

I do find anti inflammatories helpful sometimes, ibuprofen lysine or naproxen and otherwise what I find most helpful are wrapping my neck with a cooling gel pack, i keep a huge pile in the fridge or freezer for when I feel an attack or migraine coming on and they are a godsend. If you are taking long term ibuprofen or naproxen your GP should be offering you a PPI such as omeprazole to avoid/treat gastritis.

I haven't tried cooling packs yet but I'll definitely give that a go. What I've tried so far:

Physiotherapy - useless
Baclofen - useless
Ibuprofen - used to work a little but no longer does and now I have gastritis so can't take NSAID's any more.
Osteopathy - helped for a day or so then nothing
Topical ibuprofen/voltarol - used to help perhaps 10% now useless.

I haven't had omeprazole before, bugger, I could have asked my GP about that today.

You hit the nail on the head there, it’s miserable.
I mostly try not to think about it too much but it is kind of comforting to read some of the posts on this thread to see it isn’t just me, it is a side effect of the tablets, I don’t have dementia just yet.
I hope they do work for you, I’m on 10mg of amitriptyline to help me sleep, they were great for that for me, really knocked me out. They don’t really do that anymore but I found they dealt with pain in another part of my body which painkillers have never managed so I stay on it. I used to be a morning person who always woke up early but not anymore, I’m quite groggy in the mornings now and I think it’s down to those but I just want to be pain free, being in constant pain really gets me down.