Hi Guys,
I posted on this fantastic site earlier this year ( approx Feb ) as I had just been diagnosed with TN.
In that time I managed to have approx 8 glorious pain free months, and was declared to be in 'remission'
Big sigh...............approx 8 weeks ago the TN came back ( suprise, suprise!!) I was just having quick stabbing pains each day for a number of weeks and then WHAM i had an attack which lasted on and off a few hours.
I very relucantly and through desperation started the medication, Lyrica ,which was prescribed by my neurologist.
It has definitley made a difference ( day 5) but I am currently only taking one 75mg tablet at night and feel as though I need to increase the dose as I am getting some break through pain.
ok, so here's where I need some advice.........
I am currently feeling anxious, depressed, agitated and out of control!! I figure its the medication as Tegretol made me feel even worse :(
what do I do now? Im seeing the neurologist again next week to discuss my options, however I feel that the opinions of people living with it daily mean more to me at this point.
when does someone decide to go ahead with surgery?
thankyou all in advance
Rachael
There is no magic rule in deciding to proceed with surgery. But there is a lot of useful information in making that decision both in our Face Pain Info pages and by searching on the terms "MVD" or "surgery" in the site search engine window at top right on our pages.
To summarize general observations:
1. Medications are generally considered the first line of defense in trigeminal neuropathic pain. The types of meds emphasized will vary between Type I (Typical) Tn and Type II (Atypical) TN.To see more about the medications most often used with TN, suggest you visit http://drugs.com
2. Most physicians would advise deferring surgery until it is clear that medications are not effective for the patient in controlling pain with an acceptably low level of disabling side effects. It may take months to sort through all of the medication alternatives. Opioid drugs such as Methadone may be considered as a part of the spectrum of options.
3. Most neurosurgeons would advise that the chances of surgical success are best in patients who present with Typical TN (characterized by volleys of sharp, stabbing, electric-shock pain, with each shock lasting up to two minutes, and the volley generally tamping down after 2-3 hours.).
4. Most neurosurgeons would advise against destructive procedures (RF Rhizotomy, Glycerol, Gamma Knife) in patients whose pain seems associated with a discrete injury such as dental work gone bad, a blow to the face, etc. MVD in these cases generally has a lower likelihood of success, but may be attempted if MRI imagery indicates that there are vascular compressions of the trigeminal nerve(s) in the region near its emergence from the brain stem.
I hope this gives you a starting point. Please visit our Face Pain Info pages for a deeper look at the issues involved.
Sincerely,
R.A. "Red" Lawhern, Ph.D.
Resident Research Analyst, LwTN
Hi there -- I've only had this 1 year - I spent that year mostly on trileptal which disabled my thinking to the point of not being able to work. If the side effects are debilating..... surgery is an option . I had to lower my trileptal, put lidocaine patches on my face so I could be coherent enough- researched on here and asked questions, picked the best surgeon I could find and in the 12th month had MVD. I must state that I believe it works for now because I have TN1, and I have had no damaging proceedures that would lower my success rate.
Keep coming here and learning! The major factor in deciding my MVD was a chart I saw, it had arrows showing that TN only worsens with time, is always there, it's progressive needing more and more meds, and I couldn't be on those drugs anymore.
Kimberly in KC
I know exactly how you feel. I hate when you are in remission and all of a sudden you feel that twinge of pain. Then you worry yourself sick that you're going to have the "big one"!! I'm in that place right now and am so depressed. I wonder if I'm going to get "shocked" when I am out in public. I hate that. I hate TN......