What exactly was your experience like on tegretol, and when did they decide to do MVD?
Did the tegretol totally alleviate your pain, or were you still having it? Please, please, please be specific in how the tegretol helped you (or didn't) before you got MVD.
Sorry for the questions, but he more specific your answer the more you're helping!
Thank you so much!!!
I have been on Tegretol for just over a month. The only time I was completely pain free (other than a day or two here and there) was when I was weaning myself off of Gabapentin at the very beginning! Once I was only on Tegretol the pain came back but wasn't as strong, so it only helped to weaken my attacks. The Tegretol is causing a LOT of side effects! I don't have much energy, I am less patient with my kids (I really have to stop and breath so I don't yell so much!!) my joints really hurt in the morning, my head itches, and most annoying of all I have no short term memory and when I am in conversation I have to stop and think about what word I need...even if it is something really common!!!
Is that what they have put you on? I have read some of your post and I REALLY hope things turn around for you! <3
Oh I am also on the max dosage for me of 1200mg a day. He is sending me to a neurologist to discuss multiple medications to hold me over until next year when I am getting my MVD. Will be scheduling it hopefully in December or January.
I was on Tegretol initially in 2002 up to 1200mg and had complete pain relief for several months. Eventually weaned off and was TN free for 8 years!
TN returned in 2010 and pain was managed at 800mg until April 2012.
It is only now ( since april 2012) that my tn pain is not responding to the meds that I am looking into MVD. And researching as much as possible what options are available to me.
Remember sweetheart, each one of us experiences TN differently and reacts to meds and/or surgical procedures differently. Although we share similarities, we each have individual paths with TN.
Most important is having a doctor/ neurologist that works with us to help alleviate the pain and impact on our daily lives.
Thinking of you, Mimi
Hello, I have been on Tegretol for almost 3 years now, my doses have been as high a 2400mg a day, yes a very high dose. I had 3 failed radiofrequecy rhizotomies and May of 2012 I had MVD. It has also failed. All of this time I have been on some dose of Tegretol never going lower than 1600mg a day. Yesterday and had a Ganglion Nerve Block done but all the time still on my Tegretol. I will stay on it till my one year anniversary when I meet with the Neurosurgeon again or the pain stops. If you have any other questions please feel free to message me. Hope I helped in some way.
When I worked up (took several weeks) to 800 mg per day of Tegretol, I became pain free. It cannot be seen as an aspirin etc. type pain killer. It does not work immediately and you cannot rush the dosage up without very serious side effects. Unless your SE's are severe you do need to give it a couple of weeks to help you. Sorry, I have not had MVD.
I'm not a candidate for MVD, but have used Tegretol on occasion.
Like Jackie said, it does take a little time to work for most people. For me it was only a few days before I got almost complete pain relief. By the second day I generally feel a little bit better, but it's very different for different people.
I had a doctor ramp me up really fast once, and I would sincerely recommend against that. The side effects are awful, I would just fall down for no reason and it made stairs almost impossible to navigate. It also did something with my blood tests, one of the values came back high or low, I forget which.
The good news is that not everyone has terrible side effects, they tend to go away with time, and being careful with your medication schedule can help prevent a lot of discomfort. Make sure you follow through with your blood tests, if I remember correctly Tegretol can play hell with your liver.
If possible, get your whole family involved in helping you get through any side effects you might have. You might gain weight and need help with maintaining a healthy diet. You might be unsteady on your feet and need help going up and down stairs. You might have difficulty getting your eyes to focus or problems with concentration, so a tutor might be needed to help you maintain your grades. Use your resources wisely, know your limitations and express them clearly, and maybe abuse it a little to get out of household chores for a few weeks.
I was on the generic - It stopped my pain - but took away my IQ
I could not work - it impairs your thinking
If not working or going to school - that's fine
It drove me to having an MVD that has worked (year 1 now)
I could not take being confused all the time
It is very important to have your levels checked regularly as you can become toxic on Tegretol. Once you hit a toxic level you must decrease your levels until your body evens out. Check out Tegretol Toxicity online, excessive dizziness, confusion, forgetfulness, having a hard time concentrating, nausea, falling..... I have been toxic several times and I know I am before my levels are even back. It is very hard on your liver so please be careful. It does affect us all different that is what it is so hard about this drug and this disease
Just a note of caution:
Although it is true that Tegretol can cause problems with your liver, I respectfully ask you to bear in mind that it is quite rare for it to be a serious problem. We do hear a lot about its SE’s but for many thousands of sufferers it is a lifeline to a massive reduction in their pain. All Tegretol takers should have regular blood tests.
For some the side effects are just too much to bear, others not so.
I have to disagree with you Jackie on this one, when my pain flares up I take an extra 200mg with my normal 800mg dose and it does decrease the pain fairly quickly. I only have to up one dose to get relief. Once your body is use to taking it you can up or lower fairly quickly. My neurosurgeon lowered me from 2400 a day to 1200 a day in one dose then down to 600 and the pain came back and I went right from 600 to 1800 the same day. It all depends on the person and how long you have been taking it.
Jackie said:
When I worked up (took several weeks) to 800 mg per day of Tegretol, I became pain free. It cannot be seen as an aspirin etc. type pain killer. It does not work immediately and you cannot rush the dosage up without very serious side effects. Unless your SE's are severe you do need to give it a couple of weeks to help you. Sorry, I have not had MVD.
You must be more tolerant than me Shelley! That would have knocked me off my feet for sure!!! So glad it works well for you.
My comment was by more of a caution, I have literally read hundreds of comments by members expecting their meds to work in 10 minutes like headache polls might. Some do have to taper up slowly ( myself included) as they suffer with side effects so. Reducing too quickly can in extreme cases cause epilepsy, we don’t need that problem as well. It’ s always good to do as you did and work with your Dr.
Thank you all SO SO much for your answers! I'm sorry to hear what so many of you have been through :(. It's awful, and terrible, and everything else. Your answers were very informative, and I appreciate it.
Love to you all
Madeleine
Good to know your name Madeleine, it is a beautiful one too!