I met with my neurologist for the third time today--last visit was in Sept. I love this doctor for his bedside manner, and for how knowledgeable he is when it comes to all of my non-TN neuro problems. But I left today's appt wondering if I can trust him to treat my TN as it seems like I know more than he does on the subject.
He has never used the terms "typical" or "atypical," but I definitely have bilateral ATN. Today, after listening to me describe how 600mg of Gabapentin isn't working for me, and how the pain has become almost constant, and that a midday dose of Gabapentin makes me too tired to drive, my doctor added Tegretol and recommended I see a neurosurgeon. First of all, I'm REALLY early in both disease progression and med trials. And, second of all, surgery isn't an option for ATN (which I explained.) He politely countered with his opinion that I should hear that from a surgeon, and that I should establish myself with a knowledgeable TN surgeon before things get really bad. (I'm not going to see a surgeon.)
I'm wondering if I want to give up on the Gabapentin so soon. I guess I expected my neuro to up the night-time dose or something, not add another drug. I mean, if meds are ALL we ATN sufferers have for a lifelong disorder that tends to outlive the effectiveness of a variety of meds, than shouldn't we take our time going through what meds are available? Or, should I add what my doc says is a better drug with the hope that I'll stop the progression of my TN and get 100% relief/remission?
Do I need to find someone with more expertise, or can I make it work with this doctor whom I love otherwise?
Christi
Where are you living, Christi? I know of a lot of practitioners in both neurosurgery and neurology. Maybe I can find someone near you who has specialized in this area of practice.
Regards, Red
Anna, thank you for your advice. You are absolutely right! Getting a second opinion on my TN from a specialist might be a good thing.
Christi
Red, I am in the Eastern Panhandle of WV. For important health matters, I have access to Baltimore, MD, Northern, VA, and Winchester, VA. Washington, D.C. is a possibility, too, but I'm not comfortable with the traffic there.
Christi
Christy,
Two of the better medical treatment centers for complex neurological disorders are Johns Hopkins and the University of Maryland Medical Center in Baltimore. At UMMC, one physician who appears to have credentials in this area is Neil Porter. He is not known to me personally, but you may get a sense of what he knows from the following audio interview: http://www.umm.edu/podcasts/2008/trigeminal_neuralgia.htm. The one cautionary note I would make concerning their program is that they do seem to place undue emphasis on Gamma Knife, which i do not personally regard as the surgical procedure of choice for any form of TN.
Likewise, there are TNA Support Groups in your general area, which may be worth contacting for references to local or area doctors with whom patients have had a good experience. See below. Feel free to get back to me if these resources don't lead you to a practitioner who knows what he or she is doing.
Regards, Red
600 mg isn't a very high dosage Christi.
You should maybe discuss changing your medication
I have 3 x 600 a day but I am very lucky and it doesn't make me lethargic.
I've tried lowering my dosage but 1800 seem to be the minimum I can take
I still have the constant background slight pain and numbness though
I hope you find some relief soon
My wife takes 2100 mg per day of Neurontin without noticeable side effects. Patient reactions vary significantly. However, one element of treatment is glaringly absent in your narrative. With atypical TN, if mainstay anti-seizure meds like Neurontin or Tegretol do not provide adequate pain management, it is common for doctors to prescribe one of the tri-cyclic antidepressant drugs. Lyrica is also sometimes used, though its primary application seems to be fibromyalgia. These drugs appear to have a cross-action of some sort between anti-depressant effects, and moderation of a shared chemical channel that is also engaged in spasmodic pain responses.
Go in Peace and Power
Red
Hi Christi,
I'm Atypical also and bilateral. I'm happy to hear you're rejecting MVD and that you're up on the latest - that MVD doesn't work for Atypical.
My neurologist has raised my Neurontin/Gabapentin doseage to 900 mg three times a day, which seems to be helping. I also have to take Vicodin 7.5 and do get some break-through pain. But it seems that you should ask if you still have a lot of wiggle room in your doseage before you should try something else. Neurontin was the only anti-seizure I could take that I didn't have a reaction to. I had developed Stevens-Johnson Syndrome with other anti-seizure medications I was put on, but fortunately I was in the hospital at the time and they were right on top of it.
Thank you Flipper, Red and Gloria for invaluable information. I've decided to hold off on the Tegretol for two reasons: a) I'm not convinced that I should give up on Gabapentin yet, and b) my rheumatologist is changing one of my Lupus meds and it just isn't a good idea to do more than one med change at a time. My rheumatologist recommended that I double my night-time dose of Gabapentin, this would bring me up to a total of 900mg. She said that I might sleep through the drowsiness. I'm going to try that, and report back to my neurologist.
I'm so glad I found this site. I can't imagine doing this on my own...
Christi
I posted another reply and now I can’t see it.
As Red discussed I also take an tri-cyclic antidepressant drug- half an endep. ( so 5mg)
I do not take it for it’s anti depressant features. It “completes” my medication "rounds it off " nicely.
I can tell the next day if I have not had one , as my background numbness and pain is increased. I personally find them VERY strong and take it at meal time , as if I take it too close to bed time I am groggy the next day. I can only have a whole one if I am to going to work the next day.
Okay, I didn't know about the anti-depressants. I like how you described its effect, Flipper. I am feeling a constant background pain, just enough to wear me down. I will ask about this at my next appt. THANK YOU!
Christi
Christi,
I was on Lyrica (which I've seen many other members are also on) because the neurologist said that it would boost the effectiveness of the Gabapentin. Was on it for 3-4 months and didn't see any improvement or benefit, so the doctor took me off of it.
It sounds like doubling your night-time doseage of Gabapentin is a very good idea.