Trigeminal Neuralgia

[cuggles]

Hi all, despite being only 39, it is looking like I have TN. I have been prescribed Carbomezapine (I think it is called) which is making me feel awful. Does anyone have any experience of TN they can share, any advice or any idea how long I can expect to feel dreadful before I can tolerate the meds a little more? Just need any info I can get my hands on really! Thanks

Hi Cuggles.

I was diagnosed with TN in Jan this year, at the same age. Feel free to pm me with any questions you have.

I was put on carbamazepine and didn't tolerate it. It made me dizzy, drowsy and I developed a big twitch. I couldn't walk a straight line and couldn't function well enough to look after my girls. The neurologist I saw seemed to disprove of the fact that I took myself to the GP (before I'd been referred to the neuro) and told him I couldn't tolerate it and could I have something else instead? It seemed he would have preferred me to stay on it and ride out the side effects (which I've heard from some people can take months) or try the extended release carbamazepine. But I don't care.

I was lucky that I was then given gabapentin which I have far fewer side effects with. No dizziness or drowsiness at all. And I can take the pill on it, which is a bonus! Some people can't tolerate it, but it's doing a sterling job for me. I've not had any proper attacks in months now.

It took me a while to slowly get the medication to a level that was really effective.

I've been referred to my neurologist. Had an MRI. Had an MS scare. Had a lumbar puncture which dispelled that worry. And I have seen a neurosurgeon and am waiting to go back to discuss the possibility of surgery.

There are a few of us on here with TN, with different experiences. I'm sure some others may be along to share when they spot your thread.

Sorry to hear of your diagnosis, it's a rubbish thing to have to deal with and it took me a while to get my head around the fact that I wasn't going to 'get well soon'.

How long have you been on it OP? Most people find it vile at first but then settle. However if it's still bad after a week or so, go back and ask for gabapentin. I couldn't tolerate it at all..made me feel very very sick, so switched to a very high dose of gabapentin , which worked brilliantly and I have been on it (now a much lower dose to prevent it flaring) ever since.. 5 years now and I only get the odd flare up. If I stop it totally tho, it soon rears it's painful ugly head.

You can get good control (or many people can) but the right meds take time to work out. Carbamazapine is the first line of treatment but others.. Gabapentin, or Pregabalin , work well too.

Sorry you are dealing with TN. It sucks :(

Thankyou so much for your replies. I am a teacher so on half term at moment but wondering just how I will get out of bed in time for school if it is this bad next week..glad to know some other meds. are better tolerated. I guess I should give it a week or fortnight..it has only been three days (I must be a wuss!) but I feel so awful, really sick and dizzy. It is also great to see you both have had some relief from the symptoms as it is so painful isnt it. I will have to be tested for MS I think too as my mum has it so thats a worry but at lest it is not "unknown" for me and fear of the unknown can be worse I find.
I was so shocked at the gp but been going forward and backward to dentist for a few years and he can never find anything so diagnosis makes sense, even though I was hoping he would say ear infection and chuck some antibiotics at me!
One more question...do you take the meds. all the time or just when a flare up happens? I see you do Medusa but is that the norm..the thought of long term use bothers me a bit (but not as much as being in this pain!).
Thankyou so much for replying, it helps so much knowing I am not alone. So hard dealing with the pain with little children as being a bit snappy!

I take a low(ish) dose of Gabapentin every day... When I was initially diagnosed (having lost two healthy teeth to the dentist in the process..grr) I started on Carbamazapine.. puked.. went onto Pregabalin , then its cheaper but just as good, cousin Gabapentin. Initially I was on 3600mg a DAY..max dose. Boy was I off the planet for the first few weeks (I also teach so not ideal!!!) but then the pain went.. God, I still remember the feeling of NOT being in pain) and gradually after about 4 months on max dose, we lowered it slightly.. and again..

Now I am supposed to take 900mg a day, but actually I can get away with 600. At 300mg I still get 'warning 'flares so I now I can't stop. My GP told me off when I said I had tried.., she said it's a long term condition, and you wouldn't stop takining insulin if you were diabetic, just cos you felt ok. She has a point

I was also checked for MS.. MRi clear but have some suspicious symptoms. However I refuse to have an lumbar puncture so that's it for now unless I get worse!

At my worse, I was close to suicidal..and I have no tendencies towards depression. The pain was almost unremitting. Now.. I rarely think about it. Things like a cold wind, food, etc can send a little pain through my face but nothing like it was. You WILL get your life back!!

Another teacher here.... I had 3 months off with TN at the beginning of the year. The first week was because of the pain, then another week or so just because of the side effects of the carbamazepine. Just when I thought my pain was under control, I needed to raise my dose and along came all the side effects. I was back at work for one day, then off again! I then had to stop taking one and wait 2 days (worst 2 days of my life as I got a solid 16 hour attack once the carbamazepine left my system) and then start again on gabapentin. It took weeks to get up to the dose that stopped me having any attacks. Worth taking the time though.

I'm taking my 3 lots of gabapentin daily. I asked my gp when to stop taking the drugs if I think I've gone into remission. He said "months!" My lucky friend has been in remission for months, but I haven't. I have enough aches and niggles on the dose I'm on to not risk lowering my dosage.

Dealing with little ones in pain is rough. I remember my nine year old talking to me as if everything was normal, while I had my head buried in a cushion trying to breathe through an attack.

Hmm, looks like long term drugs then! How odd we are all teachers..maybe too much using our facial nerves to give "the stare" has caused it! I feel the pain, whilst not gone, is under control for most of the day with this dose which is low so I am lucky but I feel wiped out with the actual drug but will give it a few days and see where I am at. Sorry you are both going through it too...rubbish! My mum is panicking I have MS like her but this is only symptom so I am thinking not. Have to see GP in two weeks so guess that bridge will be crossed then. Thanks for all your feedback, very useful and comforting too actually!

I'm sorry to hear that OP, I only suffer from TN occasionally but it's crap!
I'm on Carbemazapine and have been for over 20 years, I hope your symptoms settle down but there are other drugs if they don't.

My mum has this, she's a teacher too! Odd. She takes oxcarbazapine and pregabalin and has been told she will never come off meds. She does struggle with some side effects. The pain looks excruciating.

My daughter was diagnosed this at 25. Two years and lots of Ned's later she is now on amitriptyline. She is much better!

Can I ask how you got diagnosed? I have 2 flare ups a year, and I Googled symptoms and cures and diagnosed myself. It's truly unbearable.

I've been to the Dr (this time last year and they prescribed... paracetamol... seriously!! I was devastated, exhausted, went home, put on a woolly hat and cried and self medicated until it calmed down.

They also suggested "see the dentist". so earlier this year I had another flare up and 2 fillings replaced, then more crying and painkillers.

what do I say to the Dr to get her to take me seriously? when I'm in chronic pain it's sometimes hard to be coherent and adequately descriptive!

There are no tests for TN, jbee. It is all down to your description of your pain.

Go back to a gp, tell them about your pain...
*where it is and
*how it feels (aching/stabbing/electric shock)
*if there are any triggers (mine were the cold, eating and drinking, licking my lips or brushing my teeth)
*whether it responds to any pain killers at all. That's the important one as nerve pain is not helped by anything that you can buy over the counter.

Then ask outright if they think it could be TN. There are guidelines for gps on the NICE website that are worth a look too. This worked for me. My GP immediately agreed that it sounded like TN, prescribed me the carbamazepin and wrote a referral letter to the neurologist at the local hospital.

I would recommend also asking for a referral to a neurologist. They are the ones who sent me for an MRI and found the 'probable cause' for my pain. I have an artery pressing on the nerve which is often a cause and means that at some point (if/when the meds stop being effective) that I am a candidate for an operation called a MVD - microvascular decompression.

My mum had this for years. She was a surgical candidate but didn't want an op. She went to an acupuncturist for years and eventually the pain subsided. She still gets some flare ups but rarely.

Sorry - that's didn't answer your question OP but thought I'd mention it in case it helps you.

hi all...thanks for responses. Jbee, my main trigger that made the dr diagnose it (and I saw another dr today who agreed entirely) was that the pain travelled along the trigeminal nerve pathway (from the front of my ear, along my cheekbone and along my jawbone) and also that I didnt get any respite AT ALL from over the counter meds. It was confirmed really when they gave me the Carbamezepin which worked immediately. Keep pressing them.
Onto another part of my story...spent wednesday night in absolute agony so in desperation took an extra tablet...stupid me...spent thursday (DD1;s 5th birthday too!) unable to walk in a straight line or even stay awake. So have been moved onto Gabapentin. Seems better although still feel sick and shattered. We shall see. Not looking forward to colder weather!

I know what you mean about not looking forward to the colder weather. I don't have any attacks now I've got my doseage just about right, but I find that cold weather or a cold breeze on a warm day sets my face aching. I'm forever rubbing it, or putting my hand on it to warm it up. And it's not properly cold yet!

One of my triggers was sunshine - remember sitting on the bus going to the docs and just crying silently with pain as the sunshine poured into the bus.

I was diagnosed straight off with TN - told the doc that nothing was touching the pain, not even dihydracodeine. It took 3 different meds before the pain came under control - doc said that everyone is different as to what will work for them. I took amitriptilene for a year, came off it and only have tiny flare-ups. Touch wood!

ooh Katiekaye I hope you stay that way! I clearly need more gabapentin as only on 600mgs (starting dose) but hopefully they will move me up a bit at a time and I will tolerate it! I hope sunshine doesn't trigger me..I love the feel of the sun on my face!

Cuggles, ask for a chat with the gp about dosage - I think you can do this over the phone. I was given advice by my neurologist about how to titrate my dose up, when to stop and it was very helpful.

When I got to 500 x 3 I stopped having attacks that came from nowhere,
when I got to 600 x 3 I stopped having attacks that were triggered by eating/drinking/getting a cold face etc.

Happily, I've had no more attacks since getting to that dose, months ago.

lets hope so then, still awful and finally have given in to a day off school tomorrow...seeing dr at 9am. Thanks for the advice...I clearly need a fair bit more!