My general doctor lowered my tegretol by 200 mg a week and I started to have pain. I called my neurosurgeon and they said it was being lowered way too fast. They suggested lowering it by 200 mg a month. I've been working my way back up to where it is suppose to be, but I'm having pain and I'm not happy about it. Will the pain go away when I get back to 1000 mg a day? Has my nerve been upset by this and now it might not heal correctly? I'm guessing I just won't know without time, but I'm hoping someone might have experience with this.
I totally understand. Mine was lowered as well after my MVD last fall. I am now taking what i was before surgery but my results are not as good. This condition is progressive in that the pain will increase and the meds become less successful. I am very limited in which meds i can take so this is sad news. I hope we both have relief soon.
Hi Jenny,
I’m sorry you’re experiencing pain, try not to be too discouraged…
After my MVD I was put on a pretty quick reduction of my 3 meds after surgery I weaned off of 2/3 and got my Tegretol down to 800 from 1600 when the pain started…
I immediately added another 200mg and experienced 4 months pain free …although sadly my pain started increasing again by 5 months post-op. I haven’t found a balance yet.
I do consider my surgery successful though as prior to MVD my pain was 24/7, med resistant. My results aren’t great but they are slightly better than before.
I have read/ heard of others here at LwTN who had spikes of pain the first weeks/ months but things settled down as the healing/ recovery progressed.
We’re all different, so try really, really hard to be positive !
Is it possible for your pain to go away ?
Absolutely!
Anything is possible, so I will keep you in my prayers and send you many positive thoughts girl!
(( hugs )) Mimi
Thank you both so much! It is always good hear someone say that things could be ok. I will wait it out and see how it goes, while hoping and praying for the best!
Your neuro is right. The brutal answer to your first and second question is that nobody knows, and you are right, you won't know without time. I don't know when the world is going to wake up and only allow doctors who have a health problem themselves to treat patients with that specific problem, because only someone with no experience of TN would advise a patient reduce their Tegretol so quickly and by such large amounts. Please do your doctor's next TN patient a huge favour and inform your GP of what your neuro said. If I received a penny for every hour that TN patients have suffered excruciating pain due to ill informed doctors, I would give it all back so we could get those hours, those days, those months and years back that were taken from our lives, that forced us all into this abyss of torture. Actually, the next doctor who gives me false information, or that fails to give me information that causes me pain better watch out, because I plan to educate them through litigation! So sorry Jenny, wish I could be more helpful; the only thing I would suggest is work your way back to the correct dosage, and only start reducing when you are feeling NO pain, because that's the first indication that you're having a break from TN. When you start reducing, do it in tiny, baby steps, allowing each reduction to stabilize, and if you start to feel pain again, stop reducing until you again feel no pain. Remember, you can take Tegretol for around three weeks before you start to feel the benefit of it, so it's a slow process working to get the correct dosage. Oh, and remember that I'm not a doctor and therefore take what I say with a pinch of salt!
Thank you, Maur. I don't know which doctor to be more mad at. I think my neurosurgeon could have told my general doctor what the recommendations were. At the same time, I think my general doctor could have looked up what the specific recommendations were for after a MVD. They just looked up what the normal is for reducing Tegretol. My surgeon's assistant did call my general doctor and let them know.
Then I remember that it does me no good to blame anyone, lol. I just hope that reducing it too fast didn't cause my nerve to freak out and undo this whole thing. That is really what I'm most scared of.
I am certainly hurting less than before the MVD, so I will wait, impatiently, and see how it goes. I would be thankful for the last couple months, even if things went bad now.
I've had a similar experience. I had to drop my tegretol dose from 1000 mg to 500 mg over the course of 2 months because of declining white blood cell count. (I'm hoping to have MVD). For a month, I was O.K. and then I had a bad bout of pain. Now I'm taking more Lyrica but nothing works like Tegretol. I'm concerned to read that people have so much pain post-MVD. Another question to ask the surgeon. I hope you find the right balance soon. I appreciate the words of hope on this page.
I'm having similar problems. I had my MVD on Dec. 5, so it's been 3 months. First I decreased my Baclofen until I was totally off of it (had been taking 30 mg. daily). Then I decreased Tegretol from 800 mg. to 600 mg. to 400 mg. But when I drop the PM dose of 200 mg. the pain comes back after about 4 days. This is my 2nd attempt to drop the evening dose, and I've been in full-blown pain yesterday and today. Guess I'll call the neurosurgeon tomorrow. I so want to be off all medication for this. The neurosurgeon felt so confident the surgery would be successful because they were able to identify and repair 3 compressions. He felt they had found and "fixed" all of them. I'm trying to be patient, but today all I want to do is cry... except blowing my nose sets off the pain!
I hear you. I remember something my neurosurgeon said right after my first successful MVD. He said they spent literally hours searching for my compressions, and at first they found nothing, but they just kept looking. He said he absolutely knew they were there because of the symptoms, all the years of pain I'd had, so they painstakingly looked and looked and looked, eventually finding a total of three. I believe that a lot, if not all of pain post MVD happens because the surgeons do not look thoroughly enough, or they find one or some and fix it, but don't keep looking for more, with the result that pain is reduced but you're still left with residual pain from the one/s they didn't actually find. From my experiences, it is absolutely vital that they find ALL of the compressions on the first MVD, because second MVDs are FAR more risky and complicated. I believe this point is why it is VITAL to see a TN experienced neuro in the first place - they should know that they have to keep looking and find them ALL. A half a job is just that, a half a job, and you're left with half the pain. Just my untrained opinion.
I also think that any patient who comes out of MVD with pain should seriously think carefully about coming off of their meds, and if they proceed it must be with EXTREME caution and very, very slowly. Apart from the pain aspect, a non-TN face is one without tightness, without a feeling of swelling, without the feeling of muscles and nerves pulled taut. You remember how your face felt before you ever had TN, you should almost KNOW if the pain is gone BEFORE you start coming off your meds. All the best.
teacher58 said:
I'm having similar problems. I had my MVD on Dec. 5, so it's been 3 months. First I decreased my Baclofen until I was totally off of it (had been taking 30 mg. daily). Then I decreased Tegretol from 800 mg. to 600 mg. to 400 mg. But when I drop the PM dose of 200 mg. the pain comes back after about 4 days. This is my 2nd attempt to drop the evening dose, and I've been in full-blown pain yesterday and today. Guess I'll call the neurosurgeon tomorrow. I so want to be off all medication for this. The neurosurgeon felt so confident the surgery would be successful because they were able to identify and repair 3 compressions. He felt they had found and "fixed" all of them. I'm trying to be patient, but today all I want to do is cry... except blowing my nose sets off the pain!
Thanks for your response, Maur. My surgeon is very experienced with MVDs. However, I never asked him if he looked for any more compressions after they found the 3 obvious ones. I've not had any trouble reducing the meds up to this last 400 mg. I just can't seem to go below that. I tell myself that 400 mg. is much better than 800 mg. plus 30 mg. of Baclofen, but I had/still have high hopes of being medication free. My pain is almost entirely "shocks" to my upper and lower jaw on the right side. But it just doesn't take much to set them off right now. I was smart enough to not try my electric toothbrush. I could barely handle the manual one today.
I'm assuming you ended up having a second MVD. Was that successful? Where are you now regarding pain and meds?
My second MVD, according to my neurosurgeon, was not a success - too much scar tissue and he quickly reached the conclusion that to proceed with looking could cause irreparable harm, so he just closed me up. I still have had no pain since then, so I suppose it's possible the surgery either moved the compression point, or it coincided with a remission that I would have had anyway. So, luckily I am pain free and off all meds at the moment.
He explained that at a first MVD the anatomy of the brain stem is laid out perfectly, but once you've had brain stem surgery, the brain stem goes into what he called an automatic repair mode, it re-knits itself as quickly as possible, but never in the same original way as it was before, and the resulting scar tissue obscures everything, making second MVDs much more risky. They just can't see clearly enough what they're doing on the second MVD and the slightest cut in the wrong place could leave you permanently disabled. We had an agreement before surgery that if it came to him not being able to see, that he wouldn't take any risks, just close me up, so that's what he did and I am so thankful for that.
teacher58 said:
Thanks for your response, Maur. My surgeon is very experienced with MVDs. However, I never asked him if he looked for any more compressions after they found the 3 obvious ones. I've not had any trouble reducing the meds up to this last 400 mg. I just can't seem to go below that. I tell myself that 400 mg. is much better than 800 mg. plus 30 mg. of Baclofen, but I had/still have high hopes of being medication free. My pain is almost entirely "shocks" to my upper and lower jaw on the right side. But it just doesn't take much to set them off right now. I was smart enough to not try my electric toothbrush. I could barely handle the manual one today.
I'm assuming you ended up having a second MVD. Was that successful? Where are you now regarding pain and meds?
Wow. That's very interesting. Both my surgery and recovery have gone well, except for this med problem. I guess I'll just have to wait and see. Glad you're in a good place now, and I hope it lasts!