Occipital neuralgia and sle, aps

[Sara_A]

Hi does anyone else with sle or aps suffer with occipital neuralgia??

I have suffered with it several yrs back and was on gabapentin and had nerve block injections into the nerve. I used to be seen by a pain specialist but have since moved area and I’m not sure there is a service like that where I am now.

Recently it seems to have started up again and wondered who people see for this as saw rheum today and he also suggested a headache clinic?? But I expect he will leave that to my gp to sort as the rheum I see is out of area to my local hospital ( I chose to see him as he’s a lupus specialist and local one useless!)

I’m on so many meds and was hoping to try to avoid going back on the gabapentin as I was on such a high dose before and am already on approx 30 tablets a day!!

[SjogiBear]

Yes I get this as part of my Sjogrens symptoms too - or maybe it's due to having APS as I have this too but was given the indication that the nerve issues were down to the Sjogrens. I was also offered gabapentin for it but refused as I wasn't keen to take it so my lovely rheumatologist has twice put nerve blocks in for me which has worked really well. In fact it's been over a year since the second time now - hope I'm not tempting fate here! There was no discussion about being referred to anyone else to deal with this symptom though and I've never seen a neurologist for example.

Have the nerve block injections stopped working for you or is it just the case that you don't know who to see to have another one put in for you? I would also be unhappy about taking yet more meds if this can be avoided.

[Sara_A in reply to SjogiBear]

I used to have the inj a few years ago and I’m pretty sure they worked but then I just moved away and was put under a rheum and that’s been it really. As before I was under rheum, neurologist and pain consultant.

Rheum did not indicate at all he would do them just said about a headache clinic.

I’m just so sick of all this constant pain and now with this starting again I could scream!! I have bad muscle spasms in my back etc and that’s prob not helping.

Currently sat with hot water bottle on my head waiting for partner to get home so I can get some diazepam on board!!

[SjogiBear in reply to Sara_A]

You've got my full sympathy there as it's a horrible pain that very little touches. If they have worked in the past then I would definitely go down that route of seeing who can put one in for you - leave messages with consultants secretaries. It's easy for them to write a script but it doesn't get to the root of the problem and the drugs leave you like a zombie - it only takes them minutes to Do the jab too. Best of luck and I hope you get some relief soon xxx

[Sara_A in reply to SjogiBear]

Well I’m already on zomorph twice daily for pain, amitriptyline, propranalol for migraine, fluoxetine etc etc etc!!!

So clearly none of this is touching it! I think I need to relax my back and neck muscles so will try the Diaz and possibly some oral morphine, try give it a whack!!

I’ve made gp app for next wk so gonna get him to refer me to SOMEBODY!!!!!!!! Please!!!! Ha

Thanks for ur help!

Tho .... I hate the nerve block inj esp when they do one side then the other as u know what’s coming! And someone behind u with a needle is bit off putting/scary!