Temporary Trigeminal Neuralgia

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I have being diagnosed by a number of Doctors the last number of days with TN. I'm a 30 year old male think it might have being a blow I took to the head playing sports 3 weeks ago pain started about the same time. Visited the dentist told me my teeth are perfect might be a gum infection took antibiotics for that. No luck went to GP gave me gapopentin and steroids said if no improvement in 48 hours go to A&E. Long story short I stayed a number of nights in hospital and was diagnosed with TN I started on 400mg of Tegretol a day since last Monday had very bad side effects at the start but all settled down now. But I also have no pain in my face at all just wondering is this down to the Tegretol or maybe I only had TN temporally could this be true. Any help or thoughts really appreciated. Mark.

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  • Posted

    Dear mark47040, I sincerely hope you had tn temporarily as its not a nice thing to have permanently.

    The tegretol taking away the pain is not unusual with Tn. I hope you have been given a referral to a neurologist as you will need to have their advice as to whether to try decreasing the Tegretol and if so at what rate. Please don't even consider just stopping as people get very bad side effects if they do that. I wish you luck and that when you see the neurologist they take you slowly off the Tegretol and all is well

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  • Posted

    Hi Mark47040,

    I've have had TN 8 years. I have heard of temporary. Once for gold & silver mixed fillings in different teaeth. Once for another toothe nerve problem. I have no problems with Tegretol. Perhaps a neurologist should have a look.

    eddie13

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  • Posted

    Thanks Val & Eddie, I have a mri booked for this coming Tuesday with the plan then to get a consultation with a neurosurgeon. I know very little how TN affects everyone for myself just wondering will I continue being able to play contact sports. Hold down a proper job. Up to what dosage of tegretol can I still drive on. Any advice would be greatly appreciated.
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    • Posted

      you will have to work out what dose you can drive on. It changes as you get used to the medication. I find that once the drug hits me which is about an hour and a half after I take it, I shouldnt be driving for about 3 hours. Look out when you are driving because you will soon find whether your reaction time is fast enough. If I try to drive when I shouldn't, I am ok until something unexpected happens. The driving is terrible here with people cutting in without indicating and tailgating and the most awful behaviour on the roads. I always plan my route carefully to avoid any hot spots or difficult things to manouvre. Take great care.
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  • Posted

    Mark,

    The mri should tell the neuro what is going on. For me, surgery is not an option. I started on Tegretol 400 mg a day. It gave instant relief right away. Over the years I've had to increase. Now 800 mg a day. 200 mg as close as possible to 6 hours apart (evenly) is critical for me. Side effects are commonly reported, but merely tiredness for me.

    eddie13

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    • Posted

      Hi Valkyrie,

      No problem talking. First attack at age 47. Took 2 years to get diagnosed with MS. Lesions on sheath around brain. No procedure for that.

      Today n yesterday tough eating. Because symptoms come n go, wife has hard time understanding how debilitating it can be.

      Rather than find a cure, Most of us manage.

      eddie13

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    • Posted

      I am on 900mg Tegretol a day plus 400 Lyrica. The two together seem to work okay without adding more Tegretol. This is so I dont reach the maximum amount of Tegretol allowable. Lyrica is not cheap though. Most people might not need as much as me. Lucky for me I am 62 so I am on long service leave after which I will retire. I worked for several years with tn and it was hard going
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    • Posted

      Hi Valkyrie,

      Sorry to hijack your discussion Mark. Hopefully you are finding the info useful.

      Am curious about the 900mg Tegretol a day. Is that 300 every 8 hours? Cause I've found even spacing critical, and the more often you have to take it - the easier it becomes to forget. Forget by more than one hour is bad news. Since I take 4 - 200mg x 6 hours, I do forget now and again. Especially after things have been going really well for a while.

      Am catching up to age 62. I see it coming.

      eddie13

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    • Posted

      I take 300 tegretol at 6am along with 150 Lyrica, then I take 300mg of Tegretol at 2pm along with 125 Lyrica and then at 10pm I take 300mg of Tegretol along with 150 Lyrica. Since I also have to take 18mg Warfarin a day at 6am (5 tablets) due to my mechanical heart valve I feel like a walking pharmacy. The morning tablets ruin my cup of tea!

      I usually wake in the morning and have to take the Tegretol immediately or I start getting the little lightening flashes. Ditto the 2pm dose and the 10pm. Sometimes it's a bit hard to wait as I am getting warning jabs but I make myself hold out. It's coming into summer here at present and things are a bit better once we get over 25 degree days.

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