Hi, Today I was finally diagnosed with TN. It's a diagnosis I had feared, but at the same time it's better then the shrugging of shoulders I had been getting from my dentists for months. My neurologist started me on Neurontin - 400mg per day plus Neuromultivitamin ("B" Vitamins). She also prescribed me some pain killers called Doreta to take if the pain gets unbereable. I should have asked the doctor really, but it only occured to me after reading all the side effects of Neurontin: 1/ Do you think it's OK to exercise while taking the drug (e.g. yoga, pilates). Due to pain I haven't been doing much lately and I would like to get back to my exercise routine, if possible. 2/ Have you experienced some really unpleasant side-effects? My doctor told me that Neurontin has mild side-effects, like drowsiness, but I'm a bit put off by the long list of them on the information leaflet. 3/Also, I'm a bit confused about the pain-killer prescribtion. I thought that it's Neurontin itself which should ease the pain. Does it or does it just "repair" the nerves and you need extra medication to take away the pain? Thank you very much for all your replies and wish you a pain-free day!
Hi! I'm on neurontin too. As far as pain goes, which type of TN do you have (type 1 with the electric shock attacks or type 2 with the 24/7 headache, or both?) ... don't be put off by side effects on leaflets, it's more of a if you notice this you might like to talk to a doctor (and the more serious ones of course you would), most people will have no side effects to a drug or if they do it's a mild one you can live with while your body adjusts to the drug. For me the worst one was cramps in my legs, if I stood still for a few seconds it my legs (calves) would cramp up ... weird I know! :) I also get the drowsy feeling and I find that I get an effect like postural hypotension where if I bend down then stand up fast I get so dizzy I think I am going to pass out (and I keep forgetting this too!). I also had a bit of nausea too while increasing dosages. I've just upped mine to 2700mg/day from 1800mg/day - I thought stuff it I'm not going through the adjustment side effects over and over again slowly increasing, I'll just go for it :) Honestly, don't be scared, I'm a nurse and give people drugs all the time and I rarely see anything nasty in side-effects :)
Oh and anti-convulsants like neurontin don't repair nerves they stop rogue nerve signals/impulses (just like epilepsy fits, they are prescribed for that too).
Thanks, Porcelina. Well, my TN is a result of a medical negligence. I had a root end surgery on one of my teeth (there was infection). After the surgery I had been complaining about pain for the next 5 months until finally they took an x-ray which showed there was infection everywhere around the infected tooth, the bone in that area was almost non-existent. So when they started treating the infection which had now spread to other teeth it was already too late for the nerve. I still have all of my teeth and the bone where the surgeons scoped out the infected parts is growing back, that's why no one uderstood why I should still complain of pain. The pain itself doesn't move around, it stays pretty much where I had bits of bone removed and root canals/root end surgeries (3 so far) done, plus a half of my chin is kind of numb but sensitive at the same time. My jaw has been deformed as a result of it all, luckily, it's not visible, but it can be felt. My neurologist told me that Neurontin actually has some healing effects and that I may be able to go off the drug completely after some time, that is if I'm lucky. That's why I thougt it must be doing something to the nerve itself apart from just stopping the nerve signals. I have one more question...why is it necessary to keep increasing the dosage if one gets relief, say, on the initial, small dosage? Thanks for telling me about the side-effects, I felt a bit drowsy yesterday too and had a funny feeling in my legs, as if I had little control over their movemets, it was a bit weird. For the cramps you mention - do you think magnesium supplements could help or is it something one has to put up with? Thanks.