TN

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New to the group... I’m so relived to find a platform to discuss TN Most ppl don’t understand or even take the time out to look up what this condition is all about I’ve been diagnosed with TN 5 years ago I’ve had moments of pain free weeks. Past 6 months horror story. The cabamazpine is really kicking my ass. Can’t take more than 2 a day without falling asleep at work. Does anyone have any advice on fighting the fatigue that comes with this drug ? Would appreciate any feed back Thanks and to all those in pain my heartfelt prayers

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  • Posted

    I also have severe fatigue with this medication. Although this is a great platform. I also find that there are great groups on FB that are very helpful and also deal with the same issues. 
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  • Posted

    Hello Dawn

    Do you know if you’ve got the vascular compression? Did you have MRI? 

    Also you’ll see on this site that some useful drug combinations are used to good effect eg Amitryptalene with Carbamaz. These should reduce some side effects. 

    Let us know what’s happening with your drugs and diagnoses. 

    Good luck

    Big D

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    • Posted

      Hi 

      I am having an mri done shortly and a stress test and en echo... went to the er recently with chest pains thought it was from the cabamazapaine. Ekg and chest X-ray and ct scan came back good 

      It’s a very scary feeling I get the weirdest feeling in my chest on the left side and I get a low grade fever when my TN is acting up... really don’t know how to explain any of this 

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  • Posted

    Hello dawn. The lethargy from carbamazepine is awful. I spoke to a pharmacist on Friday , asking your same question. But it’s here to stay I’m afraid. I’m in my third year of tn , a mere junior compared to some accounts from fellow sufferers. I take two 200mg doses per day which allows me to eat breakfast and evening meal. I take them at 6am and 3/4 pm. I only got into this routine in March. Prior to that I was eating liquidised food from a tea spoon, letting it dribble down my throat with the aid of gravity. Not very conducive to taking my wife out to dinner. Shaving was impossible, laughing a thing of the past. So eating like a new born , looking like grizzly Adams and talking like a ventriloquist make life isolating to say the least. Try experimenting with the timing of the carbamazepine. I’ve found a routine has a accumulative effect, which takes time to kick in. One of the greatest aids I’ve found along side drugs has been the use of mindfulness techniques.ive written about this on a previous post. Although the pain remains it gives you tools to reduce the suffering. I hope you find some relief. I’m due to have mvd surgery soon and if all goes well I shall have a shave and take my wife out to dinner (once my hair has grown) and chomp on a rare sirloin. Namaste pete.
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    • Posted

      All the best with ur surgery. I do try to take it at the same time daily. It’s just an awful experience in general be it 1 day or 100 days this is truly a horrible condition. 
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  • Posted

    Hi Dawn. I was diagnosed with TN by my doc sept 17 following 3wks of constant intense headache that did not respond to paracetomol, ibuprofen or codeine & random facial/scalp/neck/left shoulder pain. she first gave me diazapem for a week-it did nothing except make me sleep! she then put me on carbamazapine-it got  rid of the headache in 3-4days & she increased the dose over the weeks ahead it gradually reduced the facial/scalp/neck pain. I am still left with regular pain in left shoulder & neck & occasional accompanying headache when the pain is bad. like you the carb knocks me out. I got upto 450mg day in divided doses but just couldnt cope with the zombie feeling so had to reduce it. I now take 100mg in morning &  150mg at night a couple of hours before bed - i still feel tired but not in a trance. the pain still varies. a recent period of high stress at work flared ALL  the symptoms up again terribly-my doc said stress/anxiety can flare TN up. now the anxiety is under control again i am just left with the regular left neck & shoulder pain in varying degrees. its not on any joint its along the top of the shoulder-i cannot sleep on that side or put my arm above my head without pain. my doc said its pointless doing mri unless a disease such as ms is suspected, as the surgery is very risly in terms of paralysis & often unsuccessful, & they only consider surgery if all options of meds havent worked. I've tried turmeric capsules last few weeks-no difference yet..... I had a few steroid injections in my gluteal muscles/tendons in my right hip 6 days ago at hosp, which are systemic(meaning the steroid injection also goes around the body) & my shoulder does feel noticeably better from that.  also in december i had a 2.5wks course of oral steroids for a colitis flare & that obliterated the TN pain for about 6wks!!! Just wonder if I'd had a longer course whether it would've done more for longer, but doc's dont like prescribing oral steroids easily.

    I work too, so appreciate how you feel about the effect of the meds. I take 20mg amitryptilline at night for my bowel conditions (it slows bowels down & helps ibs pain) but they also use it for nerve pain. The TN came after my bowel conditions started so have been on amitrptilline for a while before TN, so dont really know if it helps or not. hope this info helps you a bit hun x

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  • Posted

    I've never been on Cabamazpine.   I'm .weaning off Gabapentin which I used for more than three weeks.   It appears to be a dangerous drug for various reasons and was not helping me.    I don't even think it helps me sleep at night when my neuralgia really starts acting up.    I have tried using slices of ginger on the places where the discomfort is and sometimes it seems to help.    

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    • Posted

      I used gabapentin for years it worked till if stopped. The results of my mri came back with everything looking good what ever that means I don’t know as yet. Have an appointment with the neurologist on Monday. I need to go over the effects this toxic carbamazepine is having on me and it’s only taking the edge off of the pain. Oy vey I tell you folks this is truly the worst pain ever. 

      The pain is stressing me out so much I’m getting neck shoulder and chest pains. Does this sound familiar to anyone?? 

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