TN
Posted , 6 users are following.
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
1 like, 10 replies
julie49771 dawn16307
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dawn16307 julie49771
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julie49771 dawn16307
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army183 dawn16307
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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
dawn16307 army183
Posted
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
Peteh dawn16307
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dawn16307 Peteh
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looloo43 dawn16307
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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
Notrightnow dawn16307
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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.
dawn16307 Notrightnow
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The pain is stressing me out so much I’m getting neck shoulder and chest pains. Does this sound familiar to anyone??