breakthrough pain or tablets not working again
Posted , 8 users are following.
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
1 like, 25 replies
angiegirl fed-up
Posted
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
wanganui angiegirl
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anna38464 fed-up
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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.
angiegirl anna38464
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anna38464 angiegirl
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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!
tanee2 fed-up
Posted
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
anna38464 tanee2
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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
tanee2 anna38464
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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
wanganui tanee2
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tanee2 wanganui
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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
tanee2
Posted
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
angiegirl tanee2
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fed-up
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@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.
tanee2 fed-up
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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
fed-up tanee2
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what does CBT mean?
angiegirl fed-up
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wanganui tanee2
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Did your GP refer you to KCUH to see those two doctors?
tanee2 wanganui
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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!
wanganui tanee2
Posted