1. Community
  2. Brain and nerves
  3. Trigeminal Neuralgia

Tegretol – Trigeminal Neuralgia – Remission

Posted , 23 users are following.

tanz69
tanz69

Dear all,

Just felt the need to write and say, I am finally off Tegretol for the past 7 days and so far so good. I think and hope I’m in remission, never thought I would ever be able to say that!! :o)) it’s been a very long and tough year!

 My story - As much as I hated the drug, it defo worked for me and I won’t hesitate to go right back to it as and when my TN returns, pls, pls, pls, Never!  One thing that I just want to mention is: - I probably spent the last 2/3 months taking it for no reason and the side effects were hurting more than the TN itself. It’s only when I went to see my GP and told him my symptoms, that he said it’s probably the meds. Blurry vision, pounding headaches, nauseous, neck/shoulder/arm pains, extreme fatigue/ exhaustion, slurred speech and memory loss, (could not finish a sentence, would lose my train of thought).  Never go against your Gut instinct; I just had a constant nagging feeling of being unwell. I’m usually a very upbeat, positive, energetic person but I felt so drained it was an effort to get out of bed and go to work. Seriously thought I had MS.

What they don’t tell you about TN is it does go into remission eventually, but no one knows when and it’s hard to gauge. My suggestion, if you not feeling any shocks or pain REDUCE the meds. I played with them for a few months, by dropping dosages.  Please be very respectful of this drug, work with your GP if need be.  Tegretol is used for Epilepsy first and foremost and yes they discovered it helped with TN, that doesn’t mean it’s a TN drug.  Its very powerful medication (mind altering).  In the end I was taking the Tegrotol for no reason, hence why I felt so bad. It wasn’t being used to fight the TN, i.e. send signals to my brain, as I had no pain, I just wasn’t aware I didn’t due to all the side effects which just made me feel awful/sick and in pain. Its very easy to do when you so used to living with pain every day. Ask yourself, where this pain is and is it where it first started, i.e in mouth, ear etc. My TN started with a gum infection, then the other pain followed. I can now touch my top and bottom jaw together for the first time in a year.

I can honestly say, I feel like a new person since coming off it a week ago, and I know this might sound weird too, but I feel free and like I just returned back into my own head after a very long trip to another planet. I’m driving around every corner and kind of seeing life for the 1st time in a year, completely through different eyes! Un-blurred for a start lol!

 Another bit of advice is stay out the sun, don’t suntan when on this drug, it made me feel so sick when I went on holiday. I actually ended up doubling the medication I was feeling so bad thinking it was the TN, but all the while it was the medication… and the more I took the worse I felt…???!!! It’s only when I got back home and started reducing it again, that I realised and saw on the drug indication leaflet it advises to stay away from it. 

The best bit of advice I got from my GP was……. (yes GP??)  ”If you want to come off the medication, you gona have to be brave and give it a go”! What’s the worst that can happen, you go back on it right?! I remember sitting there looking at him thinking to myself.., “listen Mate, you have not been to hell and back and in this much pain in your life so don’t sit there and tell me to be brave..!! Grhh! But when I drove home what he said made sense, how would I know if I didn’t try! I’m so glad I decided to “try”.  “Always Remember, you braver than you believe, stronger than you seem, and smarter than you think!”

If you have suffered from TN then there is not much else that they can throw at you that could be anymore painful.. You’re a survivor already!

 I will be thinking of you and still checking in to keep it “real”, the reality is…I will never be free from it, but I can take a break and rebuild my life and how I look at it.  I met all of you on here, had I not fought this, I would never of had the opportunity to take time out and listen and read your stories.  This site and your experiences helped me on the bad days,  gave me wisdom on the good days too.  Thank you!

Yes, I could be back on this journey at any time, but thankfully it’s taught me a lot about myself and never to take my health for granted again. What a painful way to find that out eh? It has taught me how to listen to others; empathise as well as sympathise with Pain.  Through your pain comes your genius….! Thanks for that!

Good luck to you all, You WILL and CAN beat this, all my best wishes!

Tanz69 xx

 

 

3 likes, 34 replies

34 Replies

Prev Next
  • Welsh_girl
    Welsh_girl tanz69

    Posted

    Hi Tanz it was good to read your story! I am at that stage of thinking about coming off Tegretol completely no twinges now for ages have reduced to 100gm now for last 10 days or so think i'm going to stop completely starting tomorrow! !

    I was a bit luckier than you not so many side effects! It does make me tired have really weird dreams and struggle to come around in the morning!

    I just have to think I have Tegretol if it returns hopefully it has gone into remission and let's hope it may never return!!!!

    Wishing you good luck Tanz

    • tanz69
      tanz69 Welsh_girl

      Posted

      Hi WG,

      ​Thanks for prompting me to a reply its been awhile since I have been on this site. 

      I’m happy to report I am still in remission after all this time, just hope I don’t jinx it by saying that. However saying that, I have not been near a dentist for the past 18 mths and don’t intend to unless I seriously have to.

      I think it sounds like you ready to come off the medication, if you don’t try you will never know. 

      Best of luck and I hope you pain free forever. xx

  • wavedancer
    wavedancer tanz69

    Posted

    Great news Tanz! I went into remission but then found eventually the times

    between got shorter and the attacks lasted longer. Fingers crossed it'll be some

    time before that happens to you. I know exactly what you mean about Tegretol.

    I'm looking forward to decreasing mine now. It does seem daft to be taking it

    now I am pain free, but am following medical advice, otherwise I'd be stopping

    mine now. It's always good to hear success stories!

  • wannahelp2017
    wannahelp2017 tanz69

    Posted

    I have a question how do you know that the Carbamazepine is working. I'm scared to talk, eat, drink or anything because I don't want the pain to come back so how do I know that it's working? I'm taking (starting today) 200mg twice daily 

    • Susannahhawkes
      Susannahhawkes wannahelp2017

      Posted

      It takes a couple of days to start working, or if you increase the dose, then it takes a couple of days to feel the effects. If you get no results with the amount you're on, then I would say increase the dosage. My doctor has said that I can take up to 400 g twice a day. 

    • wavedancer
      wavedancer wannahelp2017

      Posted

      I have TN but following a MVD operation I am now completely pain free. However when my pain was at its worst I was taking 1200mg of Carbamazepine. Even then it wasn't touching the pain. Some people find that taking other drugs in combination with the Carbamazepine controls the pain more, while some find that higher doses of it helps.

      I know you are scared of the pain coming back, but you do need to do the things you're scared of doing to know if the Carbamazepine is working or that the pain has gone. If you find that while you are eating, drinking, talking, touching your face etc that the pain does come back you may just need to up the Carbamazepine for it to control it. Everyone who has TN finds the pain excruciating and are scared it will come back. Even after having surgery I still expect the pain to come back when doing certain things like going out on a windy day.

      From what you've said it looks like you haven't got pain at the moment, or have I read your post wrong?

      Take care and let us know how you are doing.

    • ursulauc62
      ursulauc62 wavedancer

      Posted

      I have just been put on Tegretol for possible/probable TN.   The weird thing is that I developed an allergy to mould recently after I cleared up an infection of it in our shed, and I Googled this and found quite a number of people say they had their first attack of TN shortly after developing an allergy to mould.  Of course there are all sorts of things which may be linked to it - but basically - it is a nasty condition, and I had never heard of it before I was diagnosed.  My GP is also sending me for an urgent MRI - brain scan - as I have had a pituitary tumor, and there have been a few cases of tumors pressing on the Trigeminal Nerve.  

      This wouldn't be too bad in my view - as it would probably be possible to remove it.   Being stuck with this for life is not really an uplifting prospect!    I had an attack of what seems to be TN after returning from a holiday where I was travelling around alot and which was really stressful for various reasons, and I was totally exhausted - and I'd just finished having root canal treatment for 2 teeth after quite painful infections, and crowns fitted, just before I left for the trip.  

      This is my second day on Tegretol - the dose increases to 200mg a day tomorrow. I think its working a bit - praying it will work better on the higher dose.  No adverse reactions to the drug so far....

  • judith81624
    judith81624 tanz69

    Posted

    Pleased to hear your improving. My pain was never as severe as everyone else seems to report and I was only taking Tegratol for about six weeks, biggest mistake of my life!. Symptoms of withdrawal getting worse, skin rashes, swollen red eyes, emotional, irrational behaviour and thoughts rapid and disjointed speech and movements. People have asked my husband if I be been drinking. My brain feels in overdrive, disturbed sleep patterns, I'll stop there. Fortunately no physical symptoms, no nausea / vomiting, and on 'plus' side hubby enjoy s all the baking I'm doing. I am 68 year old been married 47 yes, with 2 children 5grandchildren. I have had blood taken and seeing GP later in week re results and next steps. The hardest part is not know if if anyone else has this problem.

    • ursulauc62
      ursulauc62 judith81624

      Posted

      I started on the Tegretol a week ago, and my symptoms have got a bit better.  I got some quite nasty effects going on a few days ago when I felt really nauseous and dizzy, so much so that I had to just lie down for several hours.  I was panicking quite a bit, but then my husband read about the side effects of Tegretol and practically the most common one is nausea.  I haven't had such an attack for a couple of days.  

      I also felt completely better for about 24 hours from Saturday early pm until Sunday - and started doing loads of things around the house as I felt able to for the first time in ages, and started to actually believe that maybe I was imagining it all - the TN.  But then it came back again yesterday.    I have it now but the symptoms are a bit muted - maybe its the tablets.   

      God is was so hoping I was just imagining it all.  I'm otherwise really fit and healthy, and had started hill walking in the summer.  This condition is horrible.  I really don't want it to stop me doing things in life.

       

    • judith81624
      judith81624 ursulauc62

      Posted

      I do hope you continue to improve. My TN symptoms disappeared soon after commencing Tegretol, it was after stopping it that my others symptoms started which are far worse than the pain I had. Blood results back, been told that they are abnormal and seeing Doc tomorrow to discuss results.

    • ursulauc62
      ursulauc62 judith81624

      Posted

      Oh Dear - what are all the other symptoms - apart from the nausea?

      I had another attack last night, but its somewhat better after alot of rest. How can anything be worse than the bad pain?

      I have had blood tests too and all results are normal. I'm having an MRI scan tomorrow.

       

  • rhonda35872
    rhonda35872 tanz69

    Posted

    6 years ago I was diagnosed with TN I was completely freaked out my whole life was put on hold and everything revolved around this condition needless to say I became a completely different person to my children my home my church I didn't even know who I was anymore I started taking Tegretol piggyback with a dose of Baclofen within a couple of months I became pain-free I was taking the maximum dosage for each one of the medications everyday then once I started feeling like I could I started backing off of the Tegretol I went from 1200 mg a day to 400 and down to 10 mg of Baclofen for six years I've stayed on this regiment every night before I go to bed now over the last couple of weeks I've started having symptoms of it coming out of remission I don't know what's going to happen from here but I can't say thank God for the last 6 years my heart goes out to all those who suffer with this

  • Mim_Mart
    Mim_Mart tanz69

    Posted

    Thank you so much for this, it was really helpful. I came off it for 4 mths and felt brilliant too. Have gone back on a very very low dosage as I felt lots of twinges again but good to see what you have written. Miriam 
  • Mim_Mart
    Mim_Mart tanz69

    Posted

    Thank you so much for this, it was really helpful. I came off it for 4 mths and felt brilliant too. Have gone back on a very very low dosage as I felt lots of twinges again but good to see what you have written. Miriam 
Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.