Hi, everyone. I have been having a rough few weeks since upping my Gabapentin dosage to 900mg. It is aggravating my epilepsy and causing mood instability. I feel very flat and uninterested in things that used to interest me. I don't even talk much any more. I feel teary-eyed a lot. I've gained weight on Gabapentin, too, and I don't even eat very much--that alone can make a girl cry! It's too bad, really, as this dosage has provided 100% pain relief.
I'm supposed to wean off of it and start taking Tegretol tomorrow, but I am so afraid of a new set of side-effects. I couldn't bear to gain another pound. I am seriously considering trying to make a go of it without any meds. Pretty sure that plan is guaranteed to fail since I can feel a "livewire" nerve along my cheekbone if I rest my hand on my face when lying down at night. I wish this stupid situation would just GO AWAY. Geez, now I'm crying again.
Do you have any experiences with Tegretol to share? Anybody lose weight on it???
I took tegretol when I was first diagnosed and spent 2 weeks in bed. I could not function at all. To the point where I could not even get out of bed. They for me were the worst 2 wks as I felt so dizzy and had no energy what so ever. I then came straight off that and started on Gabapentin. Unceasing the meds over a slow period of time I managed to get myself up to 2,400 mgs. I was pain free totally and lived my life as if I was me. This was a magical feeling, as I had little to no side effects. In saying this 2 months later came the unbearable break through pain. I then started Lyrica and to date have had no relief at all. I also have incorporated Trileptal recently. I’m now on 900 of Lyrica and up to 1200 of Trileptal ( brother med to Tegretol). I am still getting pain every day.
In saying this everybody has different effects from medication. I wish you all the best in finding what hopefully works for you. All I can say is chin up as every new day must come with a little positive. That’s what I tell myself every morning when I wake up.
Thanks for your reply, Andrea. I've been taking 600mg of Gabapentin (down from 900mg) for three days now, and I feel much better already. My head is clearer, and I feel my real self coming back. I couldn't bring myself to start the Tegretol. So far, no pain! I figure, I'll enjoy each clear-headed, pain-free day that I get, whether there be 5 or 500 of them.
Thank you for sharing your experience. I hope pain-free days find their way to you soon.
Christi when I first started on Tegretol I was very dozy and lethargic for the first week but then adapted pretty well to it with no obvious side effects. Unfortunately after a few months it stopped working for me and I was put onto Gabapentin.
At one point I was taking 3000mg of Gabapentin a day but still getting pain so my neurologist suggested that I bring it down to 600mg a day on the basis that if it was not working too well at a high level a smaller dose would be equally effective. I'm now down to 600mg a day and the pain is no worse than it was at the higher level.
I feel so much better - much more clear headed. On the higher dose I was aware all the time of feeling woolly headed, that I could type whole sentences that made no sense at all and I seemed to lose all ability to spell the most simple of words correctly!
I still get a lot of pain on bad weeks but at least now I don't feel like a zombie all the time. Seems it is a juggling act for us all.
I was on 2700 mg of Gabapentin a day, still in pain and literally walking around in a stupor. I had no word recall, and no energy and gained 30 lb. I switched to Lyrica, felt just a little more awake, still had pain, gained another 5 lbs in a month and insurance decided they would not pay for it. I then switched to Lamotrigine (Lamictal) and pain level is better, lost 30 lbs. and feel awake for the first time in 3 years. Just keep trying until you find something you can tolerate. Good luck!
I'm so glad you are feeling better with decreasing the dose. I loved tegretol at first because it took the pain away, but as time went on it also took my personality away. I gained ten pounds. I hope you continue to feel better!
Thank you, Mary. Thank you, Jamie. Why don't any of these meds come with a side effect that speeds up your productivity and metabolism??? Would it be so hard for the drug manufacturers to grant us that much??? : /
One somewhat more positive note: people are highly individual in their responses to the meds used to treat TN and ATN. One part of successful pain management may be a matter of trying different things or combinations of things. It's hard to wait for relief as you titrate up or down on a new med. But for many patients, the forbearance pays off in improved pain management.
I have atypical trigeminal neuralgia with constant pain. I had a short reminssion last year for about three months. Because of the side effects I stopped taking tegretol early on in my treatment. I ended up taking tramadol for a couple of years. Eventually I switched to ibuprofen only most of the time I could keep the pain at a level I could tolerate. But a couple of weeks ago I decided o
I would try to drop off the ibuprophen. That was a mistake, I ended up having a flare up. So i’m taking tegretol again. I’m hoping I can tamp down the pain enough to go back to ibuprophen again. I have a very demanding job and the tegretol makes me very loopy. I can’t take tegretol for an extended period. Good luck. This is an awful thing.
There are a couple of alternatives to Tegretol which generally have fewer side effects: Trileptal and Neurontin are often effective in trigeminal neuralgia. Amitriptylene and other tricyclic antidepressants are very often prescribed for atypical TN. If you continue on ibuprofen, be careful not to exceed maximum recommended dose levels. Many people experience gastritis or duodenal ulcers on that med in high concentrations.
my current daily dosage of meds consists of 1600mgs Gabapentin, 1600mgs Tegretol, 75mgs Baclofen, 50mgs Amatriptyline and some more for various other ailments. While I have been on Tegretol at various doses for around 8 years now , the others are fairly recent additions after admissions to hospital in November 2010. I now suffer from all the side effects you mention which I'm willing to put up with because the alternative is too dreadful to even think about. I am waiting for MVD surgery which should happen pretty soon and my hope is that I can stop taking or reduce the meds without the pain returning. If given a choice between the meds I'm on just now or the level of pain I was in it would be the meds every time. The one side effect that really hacks me off is the poor golf I'm playing this year.....or is that just an excuse :-)) If you're interested or can be bothered, the link below will take you to the section of my blog when the pain started increasing. If I'd had a gun I would have shot myself (slight exageration, but I'm sure you understand).
I tried Gabapentin same dosage and couldn't really function got the pain to go away but then I couldn't carry on with a halfway normal day, I also tried Tegretol, while I didn't experience any major side effects it did make me "cry" and be sad on it, everyone is different, and you will know if the Tegretol works or not pretty quickly, It didn't make me pain free just sad, not saying this to discourage you, just letting you know what it did to me. My doctor said it makes people lose weight, I didn't take it long enough probably to tell, but certainly I gained weight on the Gabapentin I tried and the Lyrica I tried was a huge weight gainer. Good luck, I get you saying you want to try it with nothing, I'm just about there, so frustrated of with pain, and side effects of meds, I just started Tramadol so we will see.......thinkin of you....
Tegretol wasthe first drug they put me on. Worked like a charm
For maybe 3 year. Complete pain relief. Noticed dulling of brain
And word finding problems. Sorry but gained weight. After 3 years
Drug stoped working. Had gamma knife then Mvd. Bad ending because
ended up numb and pain more severe. Now on 2400 mg neurontin
I’m brain dead in a stupor, the walking dead. Neurontin to me is much
Better than tegretol. Blood test with tegretol and it can be dNgerous.
Neurontin is a cleaner drug. HAng in there. .
I read in admiration when someone says they are having a "pain-free" day! Haven't had one of those in some time! Oh, maybe an hour here and there, but then I go and do something stupid (like brush my teeth, eat, talk, drink something hot/cold) and then the pain flares up again! still waiting for the glycerol injection to kick in!
Why can't the drug companies find something for us TN sufferers?? I'm sure if our numbers were greater, they would!!
Chronic neuropathic pain is arguably the most grossly under-funded issue in the US NIH research projects agenda. Efforts are being made to increase funding, but the science is still a terribly long way from understanding the pertinent neuro-chemistry. There appear to be over 20 genetic changes in the blood stream resulting from chronic intense pain. That's a huge number of factors to sort out and assess as targets for any medication treatment regime. The interactions are not yet understood.
I wish I could offer better news. But it's going to be a long, slow slog, from all outward appearances. I will try to publish research results in discussions here from time to time.
I think “Red” nailed it! everyone has different reactions to any sort of medication…If something doesn’t feel right then don’t be afraid to ask for something different…I went through 3 different medications before I found what worked best for me ( Trileptal ) so try different kinds and no worries you will find something that works for you. Have hope.
I am on low doses of Tegrotol but am now pain free ALMOST all of the time. Side effects, ummmm, hard to say because of the morphine, and all the other meds I use. When I first began having pain months ago I was in pain 24/7 and it was the most severe pain I could have ever imagined. I had even talked about suicide with my husband and family telling them that I just could not deal with this pain and slowly it began to work, easing my pain more and more every day and I am only taking 200mg twice a day. So definitely give the Tegretol a good try!! Good luck dear,
Hi Christi - have to say that when I was first diagnosed, the tegretol worked like a charm. No weight gain, no side effects (maybe a little difficulty in finding the words I wanted, but I initially attributed that to getting older - I'm 67), then since I was feeling so good, I bought a pack of chewing gum and boy, the sh-- hit the fan! Within days, the pain was back. I could not believe it!! My neurologist put me on neurontin - gradually increasing the doses, and within a couple of weeks I had the glycerol injection on June 28. Still having pain -- all three varieties: aching, burning and sharp shooting pains. The doctor's nurse said to take 400 mg of neurontin at bedtime and I can gradually increase the neurontin (I am on 1,000 mg now). This is to a person who never so much took an asprin!!!
I know the sensation of feeling a "livewire" -- sometimes I hear a buzzing like I have a bee in my brain! Christi, I don't know what the answer is -- I never dreamed this could happen to me (I'm sure this is your worst nightmare as well). What can I say -- is there an answer???
