Hi guys,
just been diagnosed with TN, just wondering if its a mis diagnosis as my pain is constant and can last from anything from 45 mins to about 5 hours and I'm rolling round the floor with the pain. I'm on 600mg of carbamazepine, 20 mg of amitryptiline, and Oxynorm as and when required. But last night I had a crushing headache all over my head that lasted for a good hour after I'd taken all my meds. I'm seriuosly going mad with the pain. Any ideas ??. Many thanks in advance ...Daz
Hi Daz, I think we all experience different types of pain and for different lengths. I'm currently on 1200ml of Carbemazepine throughout the day, my pain is just about manageable with that but my Amitriptiline 50mg at night time does not seem to have any affect. I spend most of the night pacing up and down for hours at a time. I have pain in my temple, eye and cheek, lying down seems to make it worse. I sometimes try a cold pack or warm facecloth depending on the pain.
Hi there I get bad episodes of constant full on pain that starts with left eye prickling and like sunburn feeling sround eye that later manifests into tingling lips along gum and a crushing pressure to cheek and jaw my gp thought it could be cluster headaches but neurology said not she said it's the tn and funnily enough since my tegretol has been upped on day of 1600mg I've experienced similar symptoms but much much milder the gp also thought facial migraine also but again no I do also get a constant migraine type pain over forehead which amitryptilline helps a bit with but to be honest some days I find there's variations in my pain past few days I've started getting a low ache in left jaw and very sharp like bee sting in left side of nose but the heavy pressure feeling across my cheeks much like having a tens machine on face really has been present all time which comes and goes most of day so answering your question is yeah it's probably the tn maybe see your gp and for increase in carbamazapine or look at tegretol xr as it's slow release side effects are minimal and levels stay more stable in bloodstream
Hi Daz
The symptoms of TN are as many as varied as the strains of the ailment.
I am on 600mg of ox carmazapine 4 times a day, 100mg of Lyrica three times a day and Zopiclone 7.5mg at night if needed.
I still have pain all of the time, albeit reduced by the medication but not totally.
Hang in there and RESEARCH the issue yourself. Get your GP to tell you what he knows about the issue and if he doesn't have a good knowledge of it ask if he knows anyone that does.
Most GP's don't see TN too often so are not terribly skilled in it.
Good Luck
Baudy
Hi,
I thought that I had a variation of migraine when I first started getting pain in my eye, but recently when it got worse (nothing in the way of normal painkillers or MST would stop it) and other parts of my face, mainly the left side, started to have similar pains I went to the GP and after giving him a full description of the pain and other symptoms (spikey-footed spider crawling across my cheek etc) he said it was TN. I had my Amitriptyline dose increased (50mg at night,10mg twice throughout the day) which I take for autoimmune induced neuropathic pain and was started on Carbamazepine, slowly increasing the dose because of other meds I'm on for autoimmune disease (100mg three times a day). I am at the point now where I get fewer episodes of short-lived stabs in my scalp and other parts of my face on a daily basis, BUT if I get a flare-up starting in my left eye I am done for! The most recent episode lasted for 14 hours!! It was on and off stabs and throbs and it also triggered pain in the entire left side of my head and face. Nothing worked to stop the pain, not even following the Carbamazipine or Amitriptyline. Needless to say I am visiting the doc shortly to try and sort out something to combat this.
On the plus side I have been following the advice of a forum member (apologies I can't recall who!) who said that they set an alarm to ensure that they take their meds at specific times. I have to say this approach has made a difference, a marginal one but still. I am only on a very low dose of Carbamazipine so have plenty of scope to increase it. Several people seem to spread out their doses which makes sense as it works better when the serum levels are stable rather than in peaks and troughs. Others take the slow release version which also gives better consistent serum levels. You could ask your GP to increase the Amitriptyline and/or spread out the doses. One thing to bear in mind is that Amitriptyline can be affected by Carbamazipine - its efficacy is sometimes reduced. Generally speaking opiate based drugs have little effect in combatting neuropathic pain. I would visit your GP and discuss how best to manage your drug regime and which meds would benefit you the most.
Best wishes.
Thanks guys,
obviuosly we're all in the same boat. has anybody ever been in remission , where its totally gone for a period of time ??
Yeah that's what I'd like to know the thought of it sounds great no pain no pill popping and the side effects they give you
Hi Daz & Vicky. In reply to your question about remission; yes. I have had TN for 30+ years; had a MVD 15 years ago which didn't help anfd then a RF lesion which gave me 2 years remission. That was followed by a 2nd RF lesiom which gave me 13 years remission! I was on a low dose of carbamazepine for some of that time and then changed to 300mg per day of gabapentin. Only recently has that failed to control the problem and I am scheduled for a 2nd MVD in a few days. So yes, I've had long periods of time without pain but didn't totally escape the pills.
Hi all.I've had 2 periods is remission; first being after a hip replacemement op and the second after acupuncture of 6 mth
Hi Guys,
Quick update, been told to stop the caremazepine straight away due to results of a blood test saying affecting my liver, so theyre trying me on Gapentin. Now I was under the impression that I couldnt just stop taking carbamazepine immediately, it has to be stopped gradually.....and I hope that it wasnt the carbamazepine that was keping the pain at bay or I'll be back to square one again...
Hi Daz, I seem to remember that when I was moved from carbamazepine to gabapentin, it was a straight move from one to the other. I am not a medic but I believe that it is when you are coming off these types of drugs completely that it has to be done gradually - not when you're moving from one to another. Hope the gabapentin works for you; it controlled my pain better than the carbamazepine and with fewer side-effects.
Hey Daz... 47 from Oz.. everyday my right lip feels like a balloon, I get what i call lightning storm pain running through my right cheek constantly up to 100 plus storms a day... tried lyrica 3 x 100mg twice a day ... didnt fix the pain just floored me and made me feel like i was tripping ... now on 3 x 50mg endep ... worst side effects like constipation and dry mouth ... still no relief in 9 months since it was diagnosed. ... the TN is driving me mad only relief is when i sleep ... had 2 mri scans nothing .. blood tests nothing .... as im writing this the storm is in my lip is pulsating ... horrendous condition ... whatever i take no relief 
Hey Grant, sorry to hear the pain youre going thru, I know exactly how you feel, I'm a 44 yr old bloke and I was crying with the pain , it was horrific. I was put on carbamazepine to start with which also gave me a dry mouth and constipation, had to drink loads of water to help with the constipation, the carbemazepine also affected my liver so the doc put me on gabapentin and touch wood at the mo the pain has eased, but I know at some point it'll flare up again, I'm just keeping fingers crossed that these tablets do the job for the longterm..
Hi Grant
I'm and Aussie also but living in Cornwall UK.
I had extreme shopoting pains and to handle those I am now on oxcarbazepine which has less side effects (at least on me) than the ordinary carbamazipine. I am taking 600mg 4 times a day.
As well I had enormous headaches over the left eye and forehead and for that I am on 100mg of Lyrica three times a day. Once you used to LIFTING your foot to walk the stumbling seems to diminish (grin). Rotten stuff I agree but it works.
The TN pain is usually treat with an antiepilepsiy drug like oxcarbazepine ro similar and Lyrica us used for the headaches in my case
Good Luck
Baudy
Cheers Daz .... its actually good to speak to other people about TN ....
The lyrica was mad .... I had 2 beers with it once ... 20 minutes later I hit the deck and slept for 9 hours ... fell asleep 3 times on the freeway once .. had to change to endep where i only got the side effects ... the more meds i take sometimes work or at least allow me to function but the TN keeps coming over the top after about 2 weeks ... its hard to explain to people whats going on. .. so its nice to talk to people in the same boat
Yes. I go months without it and then it rears it's ugly face.