Tegretol – Trigeminal Neuralgia – Remission

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

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