First, of all let me start by saying I feel truly blessed to have found this sight! It has given me so much insight on this disease and all the options available. My Dr. just increased my teg.to 800mg per day. I have not started that as of yet. I was having some break thru pain that was worse than before. However, I have no life at all!! I am holding down a job, barely, and when I get home I am exhausted. I am having issues driving and I do forget things at work. I cannot imagine increasing my dose. I am considering surgery as I don't want a life that consists of "no life". I don't even know where my pain level really is because of the meds other than the break thru about once a week, much better than before meds. Is it wise before thinking of surgery to decrease your meds to see where your pain level is really is at or am I just kidding myself? Any thoughts are greatly appreciated!
Sorry to hear you are suffering so! I would not recommend you decreasing the meds on your own. Tegretol does have some nasty side effects, but instead of stopping it abruptly, call your doctor and see about changing to something else. I was allergic to Tegretol, and switched to Gabapentin. It never gave me complete relief, but it did make the pain tolerable. My only side effect was some dizziness. The maximum dose for ME was 2400 mg per day. As I said, it never completely relieved my pain, which is the reason I sought a neurosurgical opinion. I have bilateral ATN with all three branches involved on either side. I had MVD on both sides ( separate procedures) last year. The right side surgery was only successful for the shocking pains, not the burning boring, so I had a peripheral nerve stimulator implanted in August on that side. It works really well for pain management. My right side had been affected for close to ten years, which accounts for the limited success of the surgery.
My left side was on,y affected for one year, and the MVD on that side was a complete success. I no longer take any meds!
MVD is not to be taken lightly, and you should only see a surgeon who has extensive experience with it for the best result.
Best of luck to you, I hope you get to,feeling better!
I don't know how you guys continue to work a job.When my TN was fully flared,i couldn't even leave the house.And mostly sat in the recliner or in bed.I'm fortunate i can make a few bucks at home as a knifemaker and have my shop only a few yards from the back door.From my observations here,i would say MVD is by far the most successful procedure.I was all set to have mine and the radiologist (not my doc) found i had a AVM tickling my trigeminol is how one nurse put it.( : It sure doesn't cause any giggling though. ) : I ended up treating the AVM with cyber knife,but in a few months the pain came back fiercely and i had GammaKnife for the pain in mid July 2013.Im pain free with just some slight annoying numbness,but not bad at all.I'm hoping it never comes back of course,but with Gamma it's iffy.Good luck and find you a great Neurosurgeon if you go MVD.They are not all equal.
What I know is true…
Type 1 TN , MVD. Can give you up to 90% + remission. IF within
First three to five years of onset.
ATYPICAL…40% to 50% of remission. If done soon enough.
However… With atypical the hope is
The percentage of being in LESS PAIN
and less or no meds…
And MVD is best … In the right pair of hands!..best to travel if needed for best SURGEON.
You can lower your MED perhaps
with doctor NOW if they will give you both Ritalin for energy and focus
and lidocaine patches or cream on your face
If needed lidocaine mouthwash.
That’s what I did while waited for MVD.
Your symptoms are progressive, and meds will eventually stop working.
There are soooo many meds to try, but largest group of them makes us tired and foggy.
Look at the doctors tab and get a consult… Then weigh your options.
Lastly, if want MVD, do not get gamma or cyber first!
I’ve been on here since fall 2010…got MVD within one year
I’m well, no pain, but I hang out to give back
Have you read STRIKING BACK BY DR KEN CASEY.?
Read, learn, ask, repeat
are your best odds!