Sorry if im posting this in the wrong place but would be great if anyone can help me as I am really struggling!
1. Has anyone had positive outcome with the theory that once the nerve pathwsys have been stopped in causing pain then they will reset themselves.
2. Coccyx pain, how does it feel for everyone? Mine feels like my coccyx is actually bruised or broken. Is this normal for nerve pain or is this related to something else.
3. If nerve blocks work but are temporary then what next? Is it only surgery?
I am seeing dr baranowski next month but I am so confused and muddled (probably the meds) that I need to get some things straight in my head.
Tia
Chrissy xx
questions
Re: questions
Hi Chrissy
Sorry it is me again! I can only offer an answer to one of your questions. I have no experience with coccyx pain, at least not for many years, I did break my coccyx when I was a teenager and it was memorably painful. And that is no help. And I have no experience with nerve blocks either, but I can tell you that there is certainly a lot more on offer apart from surgery. Medication for pain control is very important, and from the sound of things you haven't got things sorted out there yet.
Anyway - your first question. This is exactly what we are working on at the moment, I say 'we' - this is what Dr Greenslade has suggested and what my GP and I are now working through. The idea is that because I have had several months effectively painfree, the nerve has had a chance to 'reset', something along the lines of a ketamine reset. And that now we can reduce the meds without my pain increasing. The side effects were a bit bothersome, to be honest. And we want to find the minimum dose that I need. So that's what we are doing at the moment.
I'm on two separate meds. Dr Greenslade wanted me to take the pregabalin from 200mg down to 150mg, and the topiramate from 100mg down to 50mg. So far I've got the pregabalin down successfully, and I'm happy with things at this level. My GP wants me to wait a bit before I try to cut the topiramate. We are going very carefully so as not to overdo things and possibly trigger a flare.
So at the moment things are going to plan and it does seem as if the nerve has been 'reset' to some extent at least.
Sorry it is me again! I can only offer an answer to one of your questions. I have no experience with coccyx pain, at least not for many years, I did break my coccyx when I was a teenager and it was memorably painful. And that is no help. And I have no experience with nerve blocks either, but I can tell you that there is certainly a lot more on offer apart from surgery. Medication for pain control is very important, and from the sound of things you haven't got things sorted out there yet.
Anyway - your first question. This is exactly what we are working on at the moment, I say 'we' - this is what Dr Greenslade has suggested and what my GP and I are now working through. The idea is that because I have had several months effectively painfree, the nerve has had a chance to 'reset', something along the lines of a ketamine reset. And that now we can reduce the meds without my pain increasing. The side effects were a bit bothersome, to be honest. And we want to find the minimum dose that I need. So that's what we are doing at the moment.
I'm on two separate meds. Dr Greenslade wanted me to take the pregabalin from 200mg down to 150mg, and the topiramate from 100mg down to 50mg. So far I've got the pregabalin down successfully, and I'm happy with things at this level. My GP wants me to wait a bit before I try to cut the topiramate. We are going very carefully so as not to overdo things and possibly trigger a flare.
So at the moment things are going to plan and it does seem as if the nerve has been 'reset' to some extent at least.
Re: questions
Thanks very much it is encouraging to hear that I might not have to spend the rest of my life in a fog of medication!
Re: questions
Yes it is not nice to be foggy! I was terrible when I was on gabapentin, it was like thinking through treacle and we had to take the dose up so slowly or I couldn't cope. Pregabalin has been so much better.
Must admit that before we started taking the doses down I was sceptical to say the least, the pain relief on the original doses was so wonderful and I did not want to risk being in pain again. But now I am just fine on the reduced pregabalin and am quite looking forward to taking the topiramate down and losing the side effects. In particular it would be nice not to have the numb hands and feet which have already started now that autumn is here.
Anyway, the' nerve reset' idea seems to have worked so far. Whether it continues - ask me again in a year or so!
Seriously though Chrissy, I do hope that your pain relief gets sorted soon. Take care of yourself.
Must admit that before we started taking the doses down I was sceptical to say the least, the pain relief on the original doses was so wonderful and I did not want to risk being in pain again. But now I am just fine on the reduced pregabalin and am quite looking forward to taking the topiramate down and losing the side effects. In particular it would be nice not to have the numb hands and feet which have already started now that autumn is here.
Anyway, the' nerve reset' idea seems to have worked so far. Whether it continues - ask me again in a year or so!
Seriously though Chrissy, I do hope that your pain relief gets sorted soon. Take care of yourself.