Trigeminal Neuralgia Support Group
Trigeminal neuralgia, or Tic Douloureux, is a neuropathic disorder of the trigeminal nerve that causes episodes of intense pain in the eyes, lips, nose, scalp, forehead, and jaw. Trigeminal neuralgia is considered by many to be among the most painful of conditions.
Hi All,
OK so I've been on tegretol for about 2 years now... I thought things would be a little better but I still feel like a crazy person. I forgot to shut the water off in my bathroom, It ran for 3hours.. an additional 20.00 on my water bill. I put the peanut butter in the sink. I tried to send a fax by putting the paper in the wrong end of the fax machine. I always forget to take my pills even though I've set an alarm on my phone. To the outside world I look like a ditz.. I can't speak or spell simple words everything comes out backwards and my tenses are way off. Just a venting!!! Thanks for listening.
OK so I've been on tegretol for about 2 years now... I thought things would be a little better but I still feel like a crazy person. I forgot to shut the water off in my bathroom, It ran for 3hours.. an additional 20.00 on my water bill. I put the peanut butter in the sink. I tried to send a fax by putting the paper in the wrong end of the fax machine. I always forget to take my pills even though I've set an alarm on my phone. To the outside world I look like a ditz.. I can't speak or spell simple words everything comes out backwards and my tenses are way off. Just a venting!!! Thanks for listening.
What daily dosage are you at? I also take Tegretol and I know exactly what you are going through. I'm at 600mg a day now. Before I had my MVD surgery I was at 1200mg a day and it was terrible. I still have problems remembering things that I do subconsciously/automatically. Like locking the door to the house when I leave, turning the coffee pot off, taking my medicine... I can take my morning dose of medicine and then can't remember if I took it an hour later. ( I also have problems with vocabulary. I was off the tegretol for 2 months after surgery and I felt like a new person mentally. All my thoughts were clear again and it was great. Unfortunately my TN came back after 6 months and that's the reason I'm back on 600mg a day now. I hate this med but what else are you going to do? I tried to explain these problems to my doctor but he gives me a strange look like he doesn't understand what I'm talking about.... You are not alone....
Ken
BostonTN, what dose are you on? I'm on 600 MG of Tegretol. Been on it for three weeks now (maybe two, I can't remember). But it's already causing me problems. The doctor wants me to up it to 800 MG, but there is no way I'm doing so. I'm a college student, looking for a part time job; I can't be on a higher dose. Do any of you have problems spitting out words of what you want to say? I do. And the same goes with typing; either I don't know what I wanted to say, or I screw up what I'm typing. And it is causing my memory to be BAD. I already have ADD (attention deficit disorder), so this is not helping me at all. I hate this medication with a passion. I just hate TN.
Take care!
Thanks for your reply I'm not alone. RenGen I take 600mg a day of Tegretol, Baclofen, and Amitriptyline I also take Migraine medicine. Yes Tegretol has killed me verbally and mentally. I actually said I ated it yes Ated... Who says that? My tenses are screwed up and when I make mistakes I become the bunt of a joke. This is better than the pain but I want my life back. To tell a story becomes painful for me and the poor person listening for 20mins for me to tell it. My short term memory is bad I can't even fight with someone I have to assume they are right when they tell me you said .... I reply yes, you're probably right. :( Thank you for all you're replies... It will get better :)
i read somewhere over the last eight yrs since i was stricken with this disease that tegretol can give you alzhemier symptoms. so there you have it a medication side affect. so when taking all this stuff to stay out of pain and control your disease you have to weigh this all out. is the mind fog easier to deal with than the pain? it could also be the type of illness this causes. when you are pain your body has to compensate someway to deal with pain so maybe it is a natural thing for you to be this way a way for your body to protect yourself? keep on truckin and do each day one day at a time.
i started taking neur support like vitamin b's. if you run across or anyone runs across something that helps please post and let us know.
blessings for pain free days for you. i am happy to report after motor cortex stimulator implant for my atypical pain i am on less meds, have less pain and can function better. not a cure a lot of surgeries but it is like you hve to find a balance of being able to live WITH the disease and not let it conquer you.
jady
Thank you for your response.. Yes that makes sense and I do feel like I have to try to balance this out. I was OK for a while and accepted this and thought I was moving on... Then boom I don't want to have to deal anymore... I'm strong I'll get out of this funk but I guess after two years I thought maybe things would get easier. Thanks to all of you and listening to my rant I'm able to smile.. Thank you from the bottom of my heart... :)
Boy do I know what you are talking about. I take 1400mg of Carbamazepine and I hate the drug, but it is better than the pain. I have been on the medication for about two years. At least I have a partner who helps me say what I want to say as well as family that understands. We now lovingly joke about "what is Donna trying to say". It has caused me to be more of an introvert than I already was. Thank goodness my partner is a terrible speller :) so I can still rise to the occasion with some struggle. I have always had an excellent memory and I can't remember what the hell I did two hours ago.
I just try to make the best of the situation. I really think anything is better than the pain. I am grateful right now that I do not have too many social interactions. I have never been a ditz, but that is who I am today. I need to vent every once in a while myself and I give a mouthful to my sister (when I can get the words out with the proper vocabulary). Hang in there and you can vent anytime you want - you deserve it. (My hands shake so much I HATE it).
DONNA