Treatment after 2 years of agony !

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Hello all , i'm not  usually one for forums , but my wife suggested telling someone my story may help both me in my recovery & others suffering with trigeminal neuralgia ..... So here goe's , I was offshore in June 2016 , & started to experience a sharp but short pain in my gum/tooth , which I put down to dental care , so phoned wife & asked her to make appointment for when I was home , the pain was not regular at the time & I was more than able to live with it with a cple of pain killers . Upon visiting my dentist he could not find any issues with my teeth , so took an exray , which showed nothing , he then asked for a colleague for 2nd opinion , which is were I first heard the term "trigeminal neuralgia" , he told my dentist to refer me to specialist , which he did , unfortunatly I was unable to attend my appointment due to working abroad , I did let them know in good time so as to make another , but I was told it may take upto 6/8months for first outpatient appointment .... During this time the pains ie... electric spasms in side of jaw lower/upper right side started to get more intense to a point where if it happend at work I would get a couple of seconds warning via a quivering in my lower lip , so i would try & go somewhere quiet ie toilet or changing room . The trouble was that when working in extreem weather conditions the spasms last for upto 2 hours & in all honesty the intensity of the pain prevents you from talking moving , or anything that would help ..... I was getting desparate by this time & went for help via my GP where he told me he would treat me for TN , & prescribed Carbomazapene , which to be fair took the edge off the pain for about 2/3weeks . I was doing 3:3 rotation at the time , & was due to see neurologist on arrival back home , but 2 weeks into rotation the attacks started back with a vengence lasting 2/3 hours & 3/4 times a day ! I have got quite a high pain threshold but this was the worst thing i've ever experienced .... not being able to move or talk & kicking out with the pain with tears streaming down my face ! I was found by one of the guys i work with & rushed to medical centre on vessel , because the medic couldn't control the pain , it was decided that I should be helivacked off the vessel to nearest hospital "Emdan" Germany , where I spent 3weeks of being pumped with morphene & other unmentionable drugs that did absolutaly nothing but make me feel sycotic , having not eaten for over a month i'ed also lost nearly 3 stone "bad times" I was eventually transferred to UK hospital & put into acute ward , & placed on emergency list ! 2 weeks later i was treated "fingers crossed" successfully with laser treatment to the nerve .... That was 6months ago guys ! I've put the weight back on & started brushing my teeth again "Yehhhh" .... back to work next month ! So there is a light at the end of the tunnel for you people 🙏

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  • Posted

    Thank you for sharing. I saw your post over the weekend but was in to much pain to respond. I have been dealing with this for over 30 years. Past year I tried Botox injections. The first three rounds helped but the last one that I had about 6weeks ago I did not get as good results. The pain is just unimaginable when u have a attack,- as u know. Other than that the pain is constant. Anyway glad to hear u r doing good. All the best. MaryPat
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    • Posted

      Hi Mary , So sorry to hear of your condition ! Not sure about botox , as I received some similar treatment whilst in German hospital , NO improvement at all ... if I could suggest anything it would be to ask your  GP to refer you to a neurologist team near to you ! As they were able to put me on a mixture of medication that actually took & kept the pain away until I had radio frequency treatment , which basically involves heating the trigeminal nerve to 80 degrees , as i said in my post that was in Feb of this year & am only just now starting to feel like my old self ! Hope this helps 🙌🏻

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  • Posted

    Hey, buddy. At first, it is so soothing to know the cure worked.

    I have a query. Does the laser therapy has side effects in general? Did your doctor tell you before hand?

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    • Posted

      Not for me it didn't ! The operation lasted for about 1/2 hours & you can bring up a lot of blood as i did after , but it was only the pills that had side effects , making me very emotional & dizzy at times ! Its a slow proccess coming off them , but from 28per day i'm now on 3 per day ... 👍

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  • Posted

    It's great to hear that there are options if the pain gets too bad.

    I've been having TN on and off for the past 10 years. I have high tolerance for pain, but recently it got to the point that I couldn't chew. I've never taken any drugs, nor had any surgery. I remembered that someone has recommended acupuncture and I decided to give it a try. The pain has subsided after the first treatment. It did not go away completely, but was not as bad and the episodes didn't last as long. Also, the doc told me to watch out for 3 things: alcohol consumption (I don't drink often), spicy food (I don't eat anything too spicy), and stress (I get plenty of that 😦). I also noticed that taking 5MG of B12 daily, and getting at least 8 hours of sleep helps me to keep the pain down. Unfortunately, my "B12/plenty of rest" approach took really long time to work (over 6 months), and for someone who has unbearable pain may not be an option. But I hope this helps someone.

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