Hi everyone I am another new diagnosis. I am sitting here typing this at my job almost crying from the pain and very much having a down day.
My pain started last year about October time as severe earache, my local GP couldn't figure out what was wrong and just prescribed antibiotics and anti vertigo meds. Neither really helped a huge deal and I found myself having days of persistent earche with intermittent stabbing/shooting pains. I put it off until beginning of January when i finally went back to the doctors because I simply couldn't go to work. I was in tears from the pain which only seemed to make it worse. I saw a different GP and straight away she told me she thought it was TN when I described the type of pain and where it was located. She immediately prescribed me Amitriptyline 10mg to start with and prescribed me codipar for the pain. Unfortunately I also have asthma and Aspirin effects me so I am quite limited on which pain killers I can and can't take. The pain seemed to dull slightly and wasn't for the entire day. I went back a week later and she upped my dose to 20mg pleased that the pain was marginally better. She signed me off work for a week and told me to visit again a week later. A week later the pain was now more manageable and she once again upped the dose to 30mg and I went back to work.
That was 3 months ago and I have found the pain has gradually been returning and getting worse. I have had pain of some sort almost every day since, some days it's completely debilitating and I find myself getting in from work and just going straight to bed at 7. Others it is like an insistent burning ache either by my ear, over my left eye or along my jaw. I haven't felt like myself at all since being on the Amitriptyline, I will admit I have never been a morning person but now I can barely get myself out of bed. Unfortunately my workplace is kind of strict so I have the added worry of trying not to take too much time off so most days I am putting up with the pain or feeling like a zombie and not really achieving much.I am finally going back to see her next Monday, I rang 70 times in a 9 minute period just to try and get a same day appointment with the same GP after work hours and was told the soonest was 3 weeks time.
I am wondering if anyone who is UK based could help with the kinds of drugs that might be on offer as an alternative to Amitriptyline or if I would be better off insisting on being referred to a Neurologist?
Sorry if this is overly long and rambling I am just getting so frustrated and down with it all. I can't get over how amazing this site is though and cannot begin to say how much it has helped to know there are others there to share everything going on that understand me.
I am surprised your GP has not given you an anti-epiletic medicine to try if she has diagnosed your pain as TN. You can try Tegretol or Gabapentin. Unfortunately, the side effects are pretty bad (at least they were for me). Google them and see what you think. I am now on Pregabalin which is slighty better for these side effects. I also take 10mg of amitriptyline (I was on nortriptyline which isn't quite so strong).
Certainly ask your GP if you can try these. I would also ask if you could be refered to a neurologist. That is the best thing as they have more knowledge about TN than a GP. I was lucky that my GP trained in neurology and knew immediately what my problem was.
I hope all this helps and that you get that pain under control.
Thanks for your comments. Once I started to read up on it more I was a little surprised that she didn't try me on anything else plus the Amitriptyline. I am on a whole host of medications daily though for other medical conditions, as my mum likes to say I'm collecting them lol, so possibly there might be a conflict. I'm going to have a more in depth conversation with her next week last time I was just in so much pain any minor relief seemed massive.
I'll definitely have a quick google of Tegretol and Gabapentin see what it says about them.
I don't supposed you know of any good hospitals in the UK, I'm about half an hour outside London.
Glad to be of help. Hope you are feeling a little better today.
I know it is difficult to talk but if you are up to then ask as many questions as you can. Other meds can effect these TN meds so yes you and your GP will have to look into that.
I live in wiltshire and have been seeing Mr Patel at Frenchay Hospital in Bristol so can't help you with a closer one to London, sorry. I have had all my treatments on the NHS. If you go private I guess you have more choice!
I started on Amtryptiline at first and went up to 70mg a day which I took before going to bed and this really helped but after 6 months it lost it's effectiveness. My GP then put me on Carbamazepine and I went up to 600mg a day but it gave me blurred vision. I am now taking 900mg of Gabapentin a day , not too much in the way of side effects but not that effective for me.
My understanding is once a GP in in the UK has prescribed these three medications there is nothing more they can give you. I would advise you to push for an appointment with a neurologist or the pain clinic now . I believe they have to do everything they can " in the community" before referring you to a specialist , probably related to cost.
I wish I had pushed earlier and am now waiting for an appointment at the pain clinic which is 13-18 weeks. I have been off work for 5 weeks now but fortunately my employer is quite sympathetic and have an occupational health department however their patience cannot last forever.
You could also try accupuncture it helped me a little but again over time it lost it's effectiveness and I have now stopped treatment. My latest attempt to relieve the pain I have been taking sublingual Vitamin B12 but it is too early to say if it helps.
Your comments about work and coming home and straight to bed do strike a cord I have had the same experience on and off for the past two years and I don't really know how I have managed for so long.
I would try any of the the medications your GP suggests as we are all different but start the ball rolling for a referal to a neurologist.
Thank you so much for your reply sorry this is a bit late I had a really bad week had to leave work in the middle of the day I was in so much pain and took last week off. I will definitely give B12 a try, I'm also trying Magnesium because that's supposed to be good for nerves.
Went to the doctors last Monday and told her the Amitriptyline just wasn't working any more she suggested upping it and I flat out refused I could barely get up in the morning on 30mg it would be impossible on 60mg.
She has now prescribed me Pregabalin 300mg a day, she explained that it is an expensive drug that it's normally a last resort. She wants to wait and see how I cope with this before referring me to a Neurologist.
So far I am suffering from side effects quite badly dizziness, disorientation and just feeling mentally slow. It's a bit like being drunk that feeling of almost being out of control. Hoping my body will get used to it soon. She said it will be 2 weeks before I start to feel the benefits so fingers crossed.
Thanks again to everyone for the kind messages I appreciate it so much