A little stuck as to what to do, need some advice.

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? 


21 thoughts on “A little stuck as to what to do, need some advice.

  1. Hi Sian, well what a crappy situation. I think you need to be referred to a pain specialist if there’s any chance of getting some symptomatic relief but your neurologist does need to be kept in the loop. A pain specialist would likely be prepared to try you on something stronger unless the neurologist has a definite clinical reason why you shouldn’t. Is his reluctance that he just underestimates your level of pain or does he actually thinks something like Opiates would do more harm than good ?

    Opiates aren’t suitable for every pain condition. Apart from anything else they are very poor for certain types of pain – they hardly touch neuropathic (nerve pain). I’ve taken very strong opiates (stronger than morphine) for a nerve condition and they were another dud. But that might not be the case for you. Pain is a very individual thing.

    You need to see someone who actually specialises in pain as a disease in itself and understands pain patients and the options available. I’d hope that your neurologist would be happy to let you speak to someone. I’d not say to the Neurologist that you’re going specifically in the hope of getting stronger meds but that you just want to discuss with a Dr who’s specific job is to treat pain and to just explore all options. Surely he can’t object to that ?

    Hope my tuppence-worth makes sense. I sincerely hope you get some relief somehow. This has been going on for far too long and they’ve got to help you in any way they can.

    • I think he thinks that opiates would do more harm than good. I went to a pain management specialist about a year ago and he wanted to put me on opiates but I asked my neurologist whether I could go on them and he said no. So I’m scared if I go back to pain management and my neuro finds out he will refuse to see me anymore which will mess up surgery, do you see my problem? But I’m desperate for some relief, and I just don’t know what to do. Thanks for the advice!

  2. Sian, I think you might want to poke around the system for a new neurologist. Not every specialist thinks that opiate use is wrong – in fact I’m on them for migraine and they cause the least amount of rebound trouble and keep me feeling the best overall. Other neurologists would also be able to set you up with the stim surgery – I can’t believe your neurologist basically doesn’t care how much pain you have to endure until then. That just isn’t right. I know finding a new neurologist might seem intimidating and yes, it is possible opiates won’t work for your pain either. But you are the patient, it’s your pain and your illness and your right to try them. Good luck and take care ~ elizabeth

    • Yes you’re right the idea of finding a new neurologist is really daunting. Seeing my neuro in 2 weeks time so will see what he says then, and decide what to do, it’s definitely not easy though. Thanks for the advice!

  3. Yeah, I do see the problem. I didn’t realise you’d already seen a pain specialist who’d recommended opiates and that your Neurologist had effectively veto’ed it. Could your GP refer you back to Pain Management with a letter explaining that you’re now in urgent need of some relief, and copying the Neurologist so it’s all out in the open. It sounds like a pain specialist and your Neurologist need to talk, but I know it’s hard getting medical people to talk to each other. I reckon your GP should be making this happen.

    • Sorry I should have written that in my post. The problem with that though is my neuro won’t agree and won’t want me on opiates, so might refuse to treat me anymore. In a really difficult situation and it’s hard to know what to do.

  4. Hiya Sian, not sure how much i can help, but for what it’s worth, good pain management docs can be useful… mine looked at everything as a whole, pain + other conds + meds, and then made a holistic decision. As with your neuro doc, they couldn’t make guarantees about anything helping, but did offer suggestions. through them, currently trying acupuncture for migraines. have you ever thought of trying a hydrotherapy pool? small sheltered environment, warm water… does help me relax. is expensive for 20 mins worth but makes big difference to me. For ten mins I just float. Something small like that is good for me and wondered if it would help you.

  5. Please go see the pain specialist for management…if your neurologist does not like it..too bad..that is not ethical to treat someone that way because they do not follow your manner…A doctors first job is to provide the best possible care for the patient, even if it means a method different from what they think and/or you go see someone else..try a different method…and there are always other doctors…research one that will stick with you even if you do not agree…life is short to be scared to talk to someone else because the other person will not talk to you…and for a bit of info..A doctor cannot stop treating you because you are trying something else…they can be difficult..as we all can be..but they cannot refuse treatment…
    I saw a pain management specialist..it helped..all they did was treat my pain in a healthy manner so I could have quality of life…you do not have quality now and it seems for quite a bit of time either…

    • Thank you, I’ve just tried my triptan nasal spray again if it has no effect then I’m going back to my GP to see what she thinks I should do. But I think pain management is the way I’m going to have to go in order to get some relief that I so desperately need.

  6. I was in the same position a few years ago. I had a nuro that refused pain meds. You have the right to get a second opinion from another nuro. Find one in your area that will work with you and your Dr to keep your pain manageable. You should always have options. Daily meds, emergency meds, and then in the case you can’t get it under control the option to come into the hospital. I wish you lived close to me… I wish I had some great referal for you… Don’t give up, don’t give in. You are the one in control. You tell them you can’t live this way anymore. Find a Dr that will help you.

  7. You know what I think…pain management definitely. The neuro can get on board, or off. Like has been said, there are other neuros. I know yours comes highly recommended, but I’m sure you could find one that comes just as highly recommended, but possibly with another hospital. I agree that it is inhumane to expect you to live like you are for 2 years. Email me if you want to talk more. xoxo –Joy

  8. to be honest, I think it’s it cruel to NOT treat your pain with something stronger than triptans and then have to wait for 2 years for surgery that may or may not work. I would try the pain management and to hell with the consequences. You need pain relief and if not, I fear you may try again to kill yourself. Chronic pain does that to people. Does your neuro know you tried to kill yourself because the pain was that bad? Is there a way to see another neuro? I know my neuro just wants alternative treatments and yoga to help me but my PCP knows me better and has given me the meds I need to control my pain or I would be like you, a boat without a paddle. Get a pain management referral. And if they stop you, keep trying to find a doctor that is willing to treat your pain. Sorry for the rant but it just kills me to see you suffer needlessly when there are medications out there to help you,

    • I think the same. Yes my neuro does know I tried to kill myself because of it, but still nothing. I’m seeing my GP thursday so going to see what she says and if I can get a pain management referral off of her and then I see my neuro next wednesday so will see what he says. Thanks!

  9. I would be much more worried about the surgery than about opiates!

    In fact, did you know that any surgery at all could result in another source of chronic pain? “Across all types of surgery, one out of 10 patients will develop persistent pain after the wound has healed” (see http://edsinfo.wordpress.com/2013/11/16/stanford-researchers-getting-to-the-root-of-chronic-pain/)

    When in unrelieved pain, we can become a little desperate and too eager to jump at the offer of any possible help (I know I did!). I think you should take care of your pain first, so that you’re not in constant distress and can think more clearly about your options.

    Good Luck!

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