hi, im back again. when i first had TN i was on oxcarbazepine which made me look like a whale and week after week the tablets weren't working. i was put on tegretol and for 4 months it was like i'd never had TN, i was on 400mg of tegretol, i had a wondeful summer, made new freinds, drank alcohol, took tablets with alcohol and so on. back in december 2015 the pain started again and had to double up on tegretol and today im on 1200mg of tegretol and back to being petrified of the pain which i had today. i don't know if its breakthrough pain or the tablets just aren't working and don't know what to do, i am at the doctors tomoro and don't know whats going to happen. i had seen a neuro who i believe was the hospital janitor who had stolen a neuros badge and locked the real neuro in the cupboard. i had seen pain clinic but the tegretol was working a treat and only needed counselling and still waiting for that to come through. i have read about botox being a wonder treatment and have also heard of RADIOFREQUENCY LESIONING which is supposed to be one of the best, has anyone had any of these treatments? but for now till i can get my hands on either, what drug should i try next?? i am also on gabapentin.
many thanks
You are not alone in the way you feel about your medication and TN. I am trembling with the thought of the pain visiting me. Have you asked your DR if Lamotridgene would be a good add on to introduce and then drop some Tegratol. I was put onto Lamotridgene, Gabapentine and Tegratol.
Some people find that alcohol is a trigger for TN. I'd love. Drink but to have a little wine in a glass with lemonade at Christmas puts me into panic in case it sets things of. I have not heard of the Botox. Are you a member of TN Association UK Join it, you will get a lot of support and help. They are sufferas like you or people that support TN . Have you got a copy of "Striking Back" that's a good book to have and has helped to pull me through some flare ups. I do hope your DR can give you some help. Where do you live as there is UCLH hospital in London that has a specialist
Wow, that sounds so rough. This is the creepiest illness because it literally feelslike its gone for a day and then it flares its ugly head up again.
I have even tried medical marijuand which helps some of my other pain but does not touch TN. Today for no reason I felt like someone hit me with a hammer in my jaw and gums under my teeth. What is the radiofrequency lesioning? I also heard some neuros use baclofen. I was on the lamotridgine but felt awful, ..depressed , anxious, nauseous..The wierd thing is it helped my pain but I felt so wierd I went off of it. I hope that helps. I have also heard Scrambler Therapy may help...I can not believe what a bad disease this is and I also have post herpetic neuralgia from shingles..They are real debilitating and I feel so alone with it because nooone gets it. (except you all!!)
Thank goodness for all of you.
Hello there, I'm so sorry to hear of your struggle. A few months ago I was quite near breaking point just like you. I was starting to hate everything and everyone because they didn't understand. I was just about to give up because nothing would work and have such bad reactions to the tablets I couldn't bare it. I love my job and I just couldn't face it etc etc.
Anyhow keep going to the pain clinics, a pain management course and CBT training you will reallu benefit having people around you that are going through a similar thng,
Lamtrogine changed my life, get passed the initial side effects, It makes a huge differnce I take it with a small 300g neaurotin (a low amount as it does effect short term memory) and then a low amount of anti depressant amitriptyline to stop the side effects of being anxious and depressed.
The atmosphere is my major trigger the wind and air conditioning, I take a hot water bottle and scarf everywhere I go. I do attempt to drink alcohol but find i can just about get tipsy, and then side effects can be x10, so it can be a pointless task but i will keep trying because a glass of wine with dinner or when i socialise is part of my life and I wont be defeated!..
I really hope you can get your medication right and your life back to normal x
Thanks for the info..Yes, Lamotrigine was the only medicine that worked but I will talk to my neurologist about adding something for the side effects..Did you also get really anxious? I wa skind of crawling out of my skin.
How long have you had the pain? Iwa sin a CBT course years ago because of my shingles and Post Herpetic Neuralgia. I will have to get those tools out again. Good advise. Take care
Anna
Yep i was so anxiuos I was getting ready for work then just not able to leave the house it was becoming like a prison cell. I was cryimng all of the time (im really not a cryer) and I had a really bad tummy for about 2weeks.
I would suggest just starting on a really low dose and use it along side something you are more used to gradually work that out and increase lamtrogine. You do feel at first like you are watching yourself, like outside of your body and it's really scary at times because it's like you can't control your own thoughts b(that's when I find the CBT helpful to stop the spiralling thoughts). I've been taking it for 3months, and I'm almost living like normal. (The cold snap isn't helping but MUCH better)..
I have had this for a year and i would not inflict this pain on another human soul its horrendous, we just ahve to stay positive. Take care and i hope it works out for you! x
thanks for the replies, i'll mention lamotrigine tablets tonight, i wonder if i would have to lower the doses of tegretol before i start a new tablet? that would be hell if i have to lower doses as i would have the pain back again. i have ordered the book Striking Back, it had better good for £20!!! i know im going to end up taking every tablet i have, this really is the suicide disease. i don't know what else to do but sit here and cry.
@angiegirl, i am in the UK i will also mention UCLH hospital i feel like things and time is running out for me. i don't want the pain i want it to go. the doctors know nothing.
nope. doc wasn't having me on another tablet, said i have to stay on tegretol and all these side effects for at least 2 weekes then go and see him, i di mention thati had upped the dose after just 4 days of the other upped dose, these tablets clearly aren't working anymore and who is it thats in pain? with that radiofrequency leisoning it kills the nerve permanently, but could be left with some of your face numb, he said do you really want that? i nearly said do you want a punch? im going to see another doctor tomoro night, my usual one who's known me for 15 years and see what he says.
Do not go by the GP they don't understand the pain or deal with people like us everyday.
That said yes the other way with needles can make worse and most will advise against it as it only lasts up to 6months.
Don't give up I was just like you I could not take tegretol at all I was vomitting shaking crying couldn't sleep or couldn't stop sleeping no control at all. You replace that with something else or add something else to help. It is most likely not enough on its own.
You said you were in London? Go to king college hospital (KCUH) they specialise in this, ask for professor Tara Renton dr Leanne Ellis they have really helped me. I was looking up ethansia at my lowest cause I couldn't imagine living with the immense pain.
I hope you get some help soon x
hi, im not in London and it would cost about £100 in train fares, i'll ask my doc if there is a top specialist where i am.
what does CBT mean?
Hiya Well I have done pa bit of looking into my illness and when I go back fur enough with them I have found this. Shingles, herpes virus, neuralgia, transverse myelites, Irites, TN, SUNA, cold sores they all go back to the herpes virus no have some connection with it and so dose many neurological problems as the virus damages the nerves. It is very eye opening and very interesting. I also got my post hepatic neuralgia from an attack of shingles and had my sores and blisters on my head and face bot not my body. We all feel alone and frightened and we all have the fluttering down deep in our chests. You are right when you say no one gets it because if people can not see something wrong with you like a broken leg then they assume all is well with you even if you tell them other wise. Do you have a back problem by any chance ? How long did you stick with the Lamotridgene Do you think it might be worth trying it again only on a lower dose. What R U taking now. Well I will finish for now. Take care and remember although you can't see us we are all together in this.
Okay listen, you are hurting terribly I do understand but the book will be a good investment and friend. Now join T N. UK. Ask your DR to refer you to Prof Zac at The Eastman in London you will see all about her in Striking Back. She referred me onto Mr Matharu at the Headache clinic at the UCLH. By the way anything above the neck they call it head pain or headaches ! Hope you can get your DR to help you and if you can take someone you trust with you for back up and write down what you want to bring to the DRs attention. Remember also that once you get your bum on the seat in his office stay on it until you or the person you take with you has said what they need to say. Good Luck.
Hi
It's my Dad that has TN so I can't understand fully, but have seen him in agony and truly sympathise with you. Over Christmas my Dad's pain was horrendous, it was previously quite predictable, eg only pain if touched or moved, no pain while sleeping. But that all changed, one attack lasted 20 minutes! The dr just wanted to prescribe a muscle relaxant and an extra box of carbamazepine ! He was starting to get double vision from the tablets/extreme tiredness but no pain relief.
He insisted on being referred to a specialist. 2 weeks ago he had gamma knife surgery. I know it doesn't work for quite a while after the op, but he has only had 1 'shock' since the op! He can still feel the lurking pain and is still on the tablets, but is so so much better.
It did also seem that the pain was effected by barometric pressure.
I hope that you get sorted soon, the tn book is really good. As someone advised us, work out what your options are and keep pushing for what you need x
Hi Angie! Have you been to the specialist at UCLA? If so can you tell me her/his name? I'm suffering from facial pain without the shocks.Thanks!
Hi tanee2! Do you have typical TN to ATN ? I have ATN but have not tried lamotrigine......I am on 10 mg of nortripyline ,25 mg of pregabalin and .50 mg clonazepam.I m afraid to go higher on doses as I have such bad side effects.What were the side effects of lamotrigine for you ? Thanks!
Hello, I have facial TN smiling, eating, weather, laughing, kissing etc etc set off sharp electric shocks to my face lower jaw teeth constantly and then the above are triggers..
I was so at the bottom of the pitt before I tried lamotrogine everything just made me feel more and more insane I couldn't talk for more than 15minutes without crying because it was a trigger ..
The side effects are bad but you have to just start really slowly and be patient I had much worse time on everything else but by the time I got to lamotrogine my body was used to nearontin but that was giving me such bad memory loss I couldn't remember conversations I had just had!
I take 50mg Lamotrogine with 300g of nearontin in the morning then in the evening I take 50mg lamotrogine with 20g of amytriptln.
Main side effects dizzy, insomnia (amytriptln helps to combAt that
Hi,
Thanks for your reply! Yes, I do have back pain,, pretty significant at times.
I am seeing my neurologist today and will ask about a lower dose of the lamotridgine. I am now on 300 mg of trgretol and 300mg of Lyrica. The Lyrica is mainly for other nerve pain. I will ask her today..Thanks!
Hello I have facial neuralgia, so my jaw and teeth are constantly numb and have shooting pains and then the sharper pains come with triggers like talking chewing kissing cleaning teeth the wind etc.
I was so at the bottom of the pitt before I tried lamotrogine everything just made me feel more and more insane, I couldn't talk for more than 15minutes without crying because it was a trigger ..
The side effects are bad but you have to just start really slowly and be patient I had much worse time on everything else but by the time I got to lamotrogine my body was used to nearontin but that was giving me such bad memory loss I couldn't remember conversations I had just had so went down from 1200mg to 300mg gradually adding lamotrogine.
I take 50mg Lamotrogine with 300g of nearontin in the morning then in the evening I take 50mg lamotrogine with 20g of amytriptln.
Main side effects dizzy, insomnia, forgetful you do get anxiety and can get depressed so I take amtriptlyn .. It may seem like a lot but to feel like myself again is worth it!
I really hope they can help you it's really key to take everything at the same time everyday!
X
Hi again tanee2 ! Thanks for info re lamotrogine ..how long did the side effects last?.I am so glad that med did the trick for you!I can completely understand the depth of the deep pit you found yourself in!
Did your GP refer you to KCUH to see those two doctors?
Mine was a bit tricky becoz KCUH actually caused it and then they referred me to their pain clinic it took quite a while..
. I was fantasing about dying and I was talking to my gp every week but they didn't know enough about this condition so they referred me to a neauroglst who then referred me back to KCUH ...
I think your gp can for sure do a referral to a neauroglst, they offer the best advice for the actual medication you can try and understand the "nerves" and triggers better than a gp normally.
The side effects, I'm still tired quite a bit little forgetful and if you drink alcohol you might feel a bit strange, but the gross side effects that's really affect you take about 2 -3weeks after that human and the actual day to day pain is gone and the sharp pains the intense ones I don't have them unless I forget to take the pills on time! I really really hope they help you but if they don't I'm sure you will find your equivalent don't give up! 