So I’ve got a bit of a complicated problem, and would really appreciate some advice, if you can offer any.
So I’ve been seeing a neurologist up in London for 2 years now, I have now tried all the available methods he has wanted me to try, nerve blocks, botox, DHE and all the preventative medications on his list. But nothing has even touched the pain at all. So I’ve sort of come to the end and the only thing left to try is occipital nerve stimulation surgery, which I am looking at getting done, but unfortunately due to funding issues in the UK with the NHS it’s looking at being at least a two year wait. I’m seeing my neuro on the 20th November and I know he is probably going to say there is nothing more he can do but wait for surgery.
The only thing my neuro will give me for the pain is Triptans, but they don’t work. I’ve tried every single pill form of them with no luck, and I’ve just tried a nasal spray one which doesn’t help either. I need something for the pain when it gets bad, but my neuro won’t offer me anything stronger than triptans. I’ve been to my GP and she said she can’t go against what my neuro says, so she gave me the triptan nasal spay to try. But now that doesn’t work.
I know that I won’t survive the wait til surgery if I get nothing for the pain. My thinking is that I should go to a pain management specialist and ask for something for the pain. But I don’t want my neuro to find out and say he is not going to treat me anymore because I’ve gone on something stronger for the pain that he doesn’t agree with. Which if that happens will mess up me getting surgery through my neuro and the neurosurgeon he works with.
I’m the one in pain and I should be able to take something for the pain when it gets bad, it’s cruel for my neuro to just expect me to suffer for at least two years til surgery, if I get nothing for the pain I will most likely end up trying to kill myself again. I’m desperate for some relief, but I don’t know what to do and how to go about getting any.
Does anyone have any advice about what they think I should do?