Hi Jane 7,
Not a good day today but I’m completely accepting it.I was to have gone to London today but cancelled which is a plus for me as I’m very bad at pacing myself when in pain!
I looked into the price of one good neurologist here in Oxford with the aim of going private and his fee was £315 per half hour! I’d barely get my foot in the door and seated let alone state my case.We are lucky to have a NHS! Also I could wait the three months and see a neurologist on the NH.And up the pregabalin…I manage my medication( pregabalin) myself and my GP doesn’t seem to mind and I will never go back on 600 mg a day.I just need it to a level to take the edge off the pain when I have a bad day.I am about to chase up an appointment that has got lost at the Eastman clinic in London.I have been there before and didn’t agree as to the regime of medication they suggested as it had already been tried and not worked.Hence the reason I’m going back.I will ask if I can see their neurologist.You are indeed fortunate that you have weeks without pain,how good is that! I have had remissions and it has been bliss and it usually is when I am very relaxed.I can understand your desire not to want to sell your home.
Well Uncle Al I am indeed the Eileen you have been looking for…this new site takes a bit of getting used to!
I doubt whether a ryzotomy will help me with my type 2 unfortunately! I shall have to get a good medication regime as much as I dislike being on the meds but better than pain.
What a story you told me and so interesting.I know East Acton as we lived nearby in Ealing.
It’s funny how your place of birth can be determined by something as random as pregnant mums being sent out of London during the war to give birth and your mum was sent to beautiful Oxford and gave birth to you in Ruskin College too!
So you probably have an EU passport…not that it will be of any use much longer mores the pity!
So thank you for tracing me so diligently.It is delightful to hear from you!
All the best,
Eileen
Eileen,
First of all…happy you are you… second, not so happy my info may not help. I have to wonder why if it basically killed the nerve for me why it wouldn’t for everyone and if the nerve is dead then shouldn’t the pain be gone regardless if it is Type 1 or Type 2 … says the man without a Dr. in front of his name… Good luck in any case and I wish you the best and a successful conclusion…Uncle Al
Hi there, I am Jane, I am from Sussex and have been a member for a while now. I have Geniculate Neuralgia, Trigeminal Neuralgia and Occipital Neuralgia - for over 12 years.
Had lots of operations and pills and potions, from MVD’s to Partial Nerve Cut, to Heat Treat Rhyzotomies, to Operations through my cheek to Operations through my ear…
Allergic to Gabapentin, Tegretol, Pregablin and others!
I’d love to see if anyone has anyone else might have anything else new I might not have tried?
Hi I live in the Wirral. My GP has diagnosed me with TN. I’m due to see someone at the Walton Centre tomorrow regarding my diagnosis.
Hi Claire, I’m from Wirral too!
Hi TJB, I live in the UK too and have a friend on another site who has been prescribed Lamotrigine which I understand is a fairly new drug, it has worked wonders for her and hopefully if you have not tried this already, will work for you too. Good luck x
Hi Juno - Thank you for your reply - I have tried Lamotrigine, it made absolutely no difference to me what so ever. I was on it for quite some time, and it didn’t even touch the edge of the pain.
I should have said, that following my last 6 week spell in hospital this June, I am now on Topiramate, which I am writing a log to see if how it is working. I had another operation through my ear and combined with this new drug, I now have to see if the cycle of pain breaks or works by September - so fingers crossed. I still am on a concoction of pain killers including Abstral Sublingual Tablets for pain, so there is room for improvement, so I am being positive. I try to walk every day, and try to work as much as I can from home and take each day as it comes! …x
Hi there - just to say I went to the Walton Centre and to wish you well, they were very good there, I hope you get some answers… be thinking of you…x
Hi Jane - I notice that you are from Surrey - not that far from me and you have Occiptal Neuralgia. I have that amongst my other pain!
Drop me a line if you fancy a chat,
best wishes
tjbcharlie
Hi thank you. I was impressed with the doctor I saw today. She confirmed that I did have TN, which my gp had said it was. I’ve got to have an MIR to see what’s going on. I’ve been lucky so far that I’ve only had 2 attacks, once towards the end of last year and then again for 8 weeks starting in April. I get odd flashes now and then still so I’m hoping it stays away for a while longer. The Dr said I may be lucky and not get any more. I’d love to believe that but from what I’ve read it’s more likely to come back again sooner and for longer the next time. I need to keep more accurate record if it does come back to try and see if there is a trigger. I forgot to ask when I was at the hospital if it was ‘normal’ for the flashes to go away when you went to sleep? It seemed odd that it didn’t wake me up at night when it was at it’s worst. I’m so glad to have found this place with excellent information, and to find others who have this condition and understand how it makes you feel.
Hi, I’m not sure if I’ve replied to you via email or on the board! Doh!
It’s been a long day and I’m worn out. I saw Prof Eldridge’s fellow. She
was lovely and confirmed what my GP and dentist both thought, that it was
TN. I’ve only had 2 episodes so far, so it’s all still very new to me. I’d
never heard of it before. I do have other neurological problems so the
Walton Centre has been my second home for many years but I find the quality
of care I’ve received there to be nothing but excellent. Have you had TN
for a long time, and how has it impacted on your life? It’s good to find
someone in the same area that has it. I look forward to hearing back from
you.
Best Wishes and hugs,
wavedancer aka Chris xx
Hi, my name’s Rachael and I live near Liverpool, U.K. Currently suffering badly with TN2.
Hi tjb,sorry about delay in answering I had a visit from my painful pain for about 6 days I must say they are shorter staying with me as usually it’s twenty days if they feel like it,you have several painful things how ever do you manage ?my thunderbolts are bad enough and I just can’t take them at times but Tegretol is helping ,(I think) as I’m not happy taking the larger dose as it knocks me out and my brain doesn’t want to help me think ,so decided to reduce the dose when pain free which gives me my time back but if head starts I gradually increase,so don’t think my consultant would like that,but he thinks I have this electric shocks all the time,confusing I think,and my next appointment is in December or January so haven’t been informed yet, my occipital pain is possible due to being knocked of my moped,but even that’s a ?,lm just hoping they will go in time.
Tell me about yourself as its would be interesting to hear about yourself
Hi Eileen
Sorry to hear about time in London wasn’t managed ,I’ve been off colour for a few days and worn out by it ,just wishing one day they will go,I’m taking medication as I feel ,but not told doctor yet Asimov still waiting for MRI results yet not received and neurologist appointment is not until December or January so when I have no pain why take a. Large dose not right I know but to my body it is,so what’s happening for you at the clinic in town you were going to,like yourself we need to speak up for ourselves as not everyone reacts the same when it comes to medication, I hope you get some answers regarding your medication ,let’s just hope consultants and doctors may understand more about this excruating pain we get,eventually, keep me informed please
Jane X
Hi Eileen, I’m in the uk, Hampshire.
Hi tjbcharlie how are things going for you pain wise ?imust admit I’m just fed up with these shock attacks I get the medication makes me dizzy and I have no energy, I’m trying very hard to do things,made the effort to walk with a group and enjoyed it but rested then for ages it’s been great watching the Olympics so I don’t feel guilty then .my headaches come unexpected last for days then go but I don’t feel I get any answers as to why this happens ,and then I reduce medication to 400 mgs daily instead of 800mgs,how do you manage as I would like to hear .
Hi I currently live in Perth, Scotland. I have been suffering with TN and fibromyalgia now on and off for 3 years had MRI 3 years ago and nothing since. Saw my neurologist last week and she is admitting me into hospital for tests to be done. Also lose feelings in my legs. I have type 2 TN and currently suffering. I currently take tegretol, pregablin, tramadol, naproxen and baclofen . Neurologist not happy just been given loads of pills as on high dose for all of them and they leave me zombie like. I have been off my work since December 2015. Sometimes feels like no one understands. I have just been taking why the GP told me too. Anyone else suffering with both conditions…
Hey, Clare. Did you know that you can edit your posts by clicking on the grey pencil icon just to the left of “Reply”? (you may need to click on the three dots … first).
Seenie
OK. Thank you