So the first couple of weeks on carbamazepine were great. I was getting relief for the first time. However in the last few days I’ve had hives all over my body my face being worse, stiff muscles and pain in hips thighs chest elbows shoulders, dizziness, fever, extreme exhaustion, waking up drenched in sweat ( although that happens a lot just seems worse) vomiting, double vision, the lump behind my ear the doctor said is a badly swollen gland ( two other doctors told me I have a bony skull! It’s hurt for a year!) other lymph nodes have swelled up this week could be totally separate. Doc gave me cetirizine for the rash and told me to come off the carbamazepine or reduce the dose. I don’t want to pump something into my body that could potentially damage me what drugs have u all tried or other remedies? I’ve been looking into acupuncture. One missed dose and I’m in pain. the pain of tn is worse than these other symptoms but my quality of life was better before and I’m scared of long term side affects too. The first morning I looked in the mirror and my face was like a balloon with dotty red marks everywhere swollen lips and peeling eyelids surely there’s got to be a better way?What has everyone tried medicinal and alternative? X
I have tried amitryptiline and gabapentin. Neither helped the pain.
((((((((((hugs))))))))))) So sorry. I have only been on the carbamazepine so far. I haven't had those reactions, but I have breakthrough pain so I figure when I see my neurosurgeon on the 4th, he may add something or change me completely. Good luck!
I was thinking if you, and just about to send a message when I saw this!
(((( Marie ))))
There are lots of different meds/combos to try…check out our TN fact sheets located about mid page on the main page for a list of meds commonly used…but definitely talk to your doctor/Neuro what they think is best considering your allergies. Oxcarbazepine is similar to Tegretol but less side effects, something to ask about maybe.?
Hope you’re feeling better soon in all aspects!
Thinking of you, Mimi
Morphine 60mg sulfate er for pain. I take 1800mg Gabapentin and stopped taking Amitriptyline. Something is causing arthritis and I think it must be Amitriptyline.
I’ve been in Amsterdam for the last few days it’s absolutely brilliant. Going home tomorrow and don’t want to. Went to the Anne Frank house today I got very teared up it was pretty emotional. Visited the ‘coffee shops’ while I’ve been here they are pretty amazing there is a nice vibe to the city, calm and relaxed. Been feeling pain on and off been trying to ignore it and getting sleep and not drinking. I’m not on the meds anymore but alcohol seems to be a bit of a trigger. Hope you guys all had a good weekend yourselves xx