Tegretol – Trigeminal Neuralgia – Remission
Posted , 23 users are following.
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
jean62175 tanz69
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tanz69 jean62175
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wanganui jean62175
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mark47040 tanz69
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tanz69 mark47040
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wanganui tanz69
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tanz69 wanganui
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BigM wanganui
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Grex tanz69
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I went into remission for about a year but of course it came back, it always comes back but this time worse than ever. Tegretol doesn't work even 4 tablets ( 800mg) had no effect. Don't throw away your meds because you will need them again that I'm sure. It was't so long ago I used to sayI had this awful pain a year ago but it's gone now, Some hopes.
BigM Grex
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anne40307 tanz69
Posted
I am fairly new to this forum and have just read about your remission from TN and withdrawal from Tegretol and have to say it was like a light at the end of the tunnel. Pain has forced me to take 400mg Tegretol per day over the last 6 weeks and I am now pain free save for a very small area under one eye. My question is if I go into remission whilst still on Tegretol how will I know it has occurred? I also have the feeling of being trapped within my own head and can't even remember how good it would feel to be back to my happy go lucky normal self. I do so hope that you are still enjoying remission, may it last for many years. Please let us all know how you are getting on.
tamiko_84091 tanz69
Posted
Hi there. I have just been prescribed Tegretol today after a long journey of constant pain and having 2 root canels and 1 tooth removed. I have unfortunately read many negative reviews and am now feeling concerned and freaking out as I'm desperate for this pain to go.
Your story however was more positive and great to read. I wanted to ask how long does it take for the tegretol to start working? I've been prescribed 100mg twice a day with a review in 2 wks I'm freaking out as I'm literally in agony and have a holiday in the Caribbean in four weeks time. The side effects sound awful. I'm desperate for the pain to stop and NO pain killers seem to work.
Sasha8101 tamiko_84091
Posted
Hi, I just saw your post and you sound desperate - as I have been - so thought I'd respond. I can only speak for me and everyone is different but here's my story:
I was in agony at the start, like you, as I was only on 3 x 50mg a day. It was then increased a few days later to 3 x 100mg a day. That helped but I had bursts of agony like you, so it got increased to 3 x 150mg a day. And then to 3 x 200mg. I was much better but still getting awful break throughs so now I'm on 3 x 200 during the day and then 1 x 100 in the evening before bed. So four doses and 700mg in total. I'm virtually pain free now. If it were me, I'd be on the phone to my doctor hollering and ask him or her about increasing your dosage. I increased mine from a hell filled zero to an almost pain free 700 over 4 weeks or so. But you do need to increase the dose slowly. That's really important. Get onto your doctor right now! Look at the TN Association website too - really helpful.
If you're going to the Caribbean, you need to read up on Tegretol and alcohol and sun too.
Let me know how you get on. You're not alone!
tamiko_84091 Sasha8101
Posted
Thank you so much. I just cannot believe this is happening to me I am already feeling zoned out not sure how much is the tegretol and how much is the co codomyl (not even sure why I'm taking the co codomyl it does nothing but I feel I need a pain killer). I will call my gp today but the whole journey has been a nightmare my GP has constantly passed me back to the dentist while the dentist says it's not my teeth and sends me back to my GP. They even disputed who should send the referral for a facial scan. The whole experience has been a nightmare. And now I'm anxious about going on our expensive and long planned holiday if I can't get this pain controlled.
When I read other people's stories my pain sounds very different I had a constant dull aching feeling like there was a clamp on my tooth since early December the feeling has now increased but it's there all the time it doesn't go away and it's not short sharp pain it's just there all the time like a tooth ache but I even had the tooth removed.
Can I ask what side effects do you have from tegretol it all sounds quite worrying yet I know I have no choice!
Thank you so much for replying I had never even heard of this Condition before I had it.
Sasha8101 tamiko_84091
Posted
Hello again,
When I was in real pain, my dentist advised me to see a neurologist.
If youve been referred for an MRI through the NHS, I don't know whether you will get the date and result through in time for your holiday. Even if you do, that won't solve the pain issue in the short term. Maybe that's why you should ask your doctor about increasing the dose of Tegretol to see if that helps with the pain? Again, I'm not a doctor, but that's what I would do and that's what my neurologist did with me.
It might be worth discussing with your doctor increasing the Tegretol and stopping taking the co-codamyl altogether. At least then if you do get pain relief, you know that it's more than just tooth ache as conventional pain killers don't work with TN.
The Tegretol makes me feel very drowsy as it does for many. The co-codamyl will have the same effect though, which is why I stopped taking it. Many, like myself, were just happy to take the Tegretol at the start and be pain free, despite the side effects.
May I suggest that you look at the Trigeminal Neuralgia Association website? It's fantastically helpful and may help you identify what's going on. There are others who may well have experienced the same kind of pain as you and can help.
Let me know how you get on. Like I say, you're not alone, though right now you probably feel very isolated and worried.
tamiko_84091 Sasha8101
Posted
Thank you so much for your reply. I've never joined a forum before but it's good to know I'm not alone. I feel so stressed out as I'm being passed around and no one seems to no what this is. Even though I've now been prescribed Tegretol my symptoms sound different from the description even on the TN association website which I have looked at thanks to you. I will try and get a gp appointment tomorrow as they only give same day appointments. It's only my third day of taking tegretol so I know I need to give it time but I feel panicked as my holiday moves closer.
This is a whole new world for me and a very scary one as I have read they you have this for life and it never goes away!! I pray the tegretol works soon as I will try to keep the dose as low as possible due to my job and feeling spaced out all the time. Thank you so much for replying it definately helps to speak to others as I dnt think anyone in my close family and friends really understands what I am experiencing.
Sasha8101 tamiko_84091
Posted
Just to say that I hope your appointment goes well with your GP today. Do let me know how you get on.
You say that your symptoms are different from many classic TN sufferers you've read about, so why don't you start a new thread asking people whether they've experienced the same as you and if so, what was the outcome? This thread is primarily about remission, so won't necessarily attract the attention of people who are going through the same as you at the moment. Just a thought anyway. Keep strong!
tamiko_84091 Sasha8101
Posted
Thank you. I didnt realise this thread was mainly about remission this is all new to me.
I did a lot of research last night and I dnt believe I have trigeminal nueralgia I think I have atypical odontalgia which is a type of nueralgia but it is a constant throbbing that does not go away and is not short sharp shocks. I have now been prescribed anti depressants as a pain relief and take off tregetol. This is basically through my own research and the health professionals have not been supportive at all. I pray that I'm right but my symptoms relate much more to this other condition. Thank you for your supportive emails it's still nice to know that I am not alone and I pray this works for me.