My name is Sarah . I was diagnosed with TN recently, and am still undergoing tests to rule out MS, etc... My doctor prescribed me Carbamazepine 200mg tablets that I am to take twice a day (400mg a day). I am very hesitant to take it due to my belief in taking meds and also the fear of the serious side effects, as I do not want it to affect my ability to work. My hope was that if I could get through a few days, I would be one of the patients where the TN would just suddenly go away. Unfortunately this is not the case at all, and it is getting worse.
With that said, I HAVE to take the meds because the pain is excruciating and is preventing me from fully functioning at anything I try to put my mind to right now anyway.
I am writing to see if anyone can tell me the experience they had with Carbamazepine, so that I will know what to expect?
My questions are:
1. Does the medication just dull the pain or take it completely away?
2. Does it prevent the attacks from happening, or does it just limit how many I have a day?
3. Has anyone been able to function on the medication (drive, talk to clients, build proposals, stay alert, etc...)
4. If the meds work, will I have to take it forever, or can I stop taking it at some point.
Sorry for so many questions:0( I am just trying to take the first step in my desperate attempt to making the pain stop, and want to wrap my head around what to expect:0)
Hi sweetie! Yes, you are going to HAVE to take it unfortunately. I had to take 100mg twice a day and taper up from there. After my 1st 100mg dose in the evening, I woke up the next morning feeling NORMAL with no pain! I worked my way up to 400mg a day, then I had to work my way up to 800 a day because of breakthrough pains, THEN up to 1200 a day! I still work full-time. NO, it is NOT easy! I am extremely forgetful and spaced out. I have problems thinking of the right words for things sometimes. Sometimes my hands won't do what I tell them and I am REALLY tired most of the time. I have noticed that if I am up moving around a LOT, then I don't get tired. But my job is a desk job so I sit a lot. Coffee is a good friend of mine......and it doesn't work all of the time. But I DO still function, just not like I want to. I am a one-woman office too. I do EVERYTHING, payroll, A/P, A/R, the books, all the state & federal sales tax reports, customer service, etc..... It will prevent full-blown attacks most of the time, unless you are needing to increase your dose. I still feel tingles, crawling and stabs sometimes but they are not NEAR as severe as it would be without the meds. Yes, you will probably have to take meds forever, unless you go into a LONG remission. Then you can taper down slowly and see how it goes. Also, if the meds stop working and you are at max doses, it's probably time to talk MVD surgery. My advice for your meds is to read up about it so you know everything there is to know. No problem answering questions hun. That's what this site is for! ((((((BIG HUGS))))) If you need to know anything else, let me know. :-)
Thank you so much Donna for the info you provided, it was very helpful and gave me a glimpse of hope that I can still hold onto my career and take the meds and be pain free. I will let you know how it turns out! Thank you again for taking your time to try and help me understand the medication effects;0)
Carbamazepine is pretty weird. It works is all I can say. In my experience it limits the number of attacks per day, but I was still just as tired as if I had them all. Maybe more so. Also when you miss a dose the pain is so bad I feel like throwing up. But its better on it than off of it. I believe you'll see what I mean. It takes 2-3 weeks to get used to it in my opinion. I was off of it for 2 months, and I was just a negative person. Now I have a little more personality even though on more tires. Good luck to you, you'll start to figure the world of pharmacology out. It does work though. And lower side effects than others I must say.
I have been on Tegretol for about 8 years, as the others have said it does work for alot of people. In my experience it took about 3 weeks to get used to it and for it to give full effect. I take 200 mg 2 x a day, they had worked me up to 800 but brought me back down to a maintenance level. There was some concern in my case of liver toxicity, make sure they keep an eye on that as they may want to up your dosage. I still have some pain but it is definitely manageable, I work as a machinist and shop supervisor and have no trouble on this dosage, I may be a little forgetful some time but I attribute that more with age than meds
So I’m hearing it takes at least 2 weeks to kick in. Is this why I was perscribed tramadol as well? Eventually will I not need the pain meds? Tramadol doesn’t work anyway!