Hi. I'm Kate and I'm a new member here. I'm really looking forward to learning more about TN and what treatment options I have. This has been a 5 year roller coaster for me. In 2007 I was kicked in the face by a horse and that started a domino effect of symptoms. I have a constant feeling of fullness, burning, pressure combined with shooting pains in my face. My family jokingly dubbed this "exploding face syndrome." The pain was unbearable at times and really affected my quality of life. At first, we thought this was sinus related and I've had 4 sinus surgeries trying to alleviate the pain. Another doctor told me I have migraines even though I tried to tell him that the pain was superficial and in my face. I was finally diagnosed in July 2012 as having atypical TN.
The first treatment for me was tegretol, but I did not tolerate that well. I had horrible memory loss and would lose entire days at a time. It helped with the pain, but the fact that I was non-functional otherwise meant that was not going to work for me. The doctor that prescribed the tegretol then jumped right to MVD, stating that if I couldn't tolerate tegretol, I wouldn't be tolerant of any other treatment options. I went on the search for a second opinion because the idea of brain surgery scared the poop out of me.
I went to another doctor who agreed with the diagnosis of atypical TN but said that surgery was premature. He referred me to another specialist who was more well versed in the pharmaceutical treatment options for this. This last doctor has put me on Topamax and it's been hit or miss. I haven't been on it long enough (or consistent enough about taking it) to know whether or not it's really working. The one weird and annoying side effect I've been having is random muscle twitching on the left side of my face. It will twitch for hours! Is this common for Topamax?
I'm still very much in the learning stage of this condition and would welcome hearing your experiences. I'm glad there is a resource like this. After a 5 year search for answers, I was really beginning to feel helpless and it's nice to know that there are others who can relate!
Hello Kattie and welcome to this site, althought I am very sorry for the circumstances that brought you here. You must have had an awful time being passed from one doctor to another, it's good to be diagnosed at last! I was diagnosed with ATN sometime in June this year and I'm still learning....I'm on my second medication for TN. Similarly to you, I was also told by one neuro that there are only a few drugs to treat this condition (or should I say it's symptoms), but I know from people who come to this forum that there are a lot more options! Actually, sometimes I get the impression that you'd have to be really lucky to react possitively to the first drug that is prescribed to you - especially with ATN. In some cases, a combination of drugs is needed. I'm currently taking Lyrica at 150 mg per day and some antidepressants, which really helped me get some of my life back. I'm also trying my second round of acupuncture (with mixed results). LwTN is a great place for people who have been somewhat unlucky to get TN and I've learned so much from the people who post here, hope you'll too. I wish you get many pain-free days soon. x
Hi Kate, I just went for a 2nd opinion from a new Neuro today and am switching to Topamax as I taper off Tegretol (lots of side effects). I was told all about the twitching and what to expect, it sounded exactly what is going on with you, I was told to not be concerned if I experienced them. Hope this helps. Welcome, there are wonderful, helpful people on this site!
Hi Kate,
Welcome to the group.
I was diagnosed last year in november and still trying to get the medication thing sorted, it seems to be a long road trying to find the right mix of medications.
Best wishes in your journey to be pain free and getting kicked in the face by a horse sounds terrible.
I am Cris and have been diagnosed for 13 months now. Our good and bad days are easliy discussed here; feel free to come and VENT / cry / ask questions / BE YOURSELF here! Take the time to read the posts from people that you can relate to...they have helped me SOOO very much! If I can help you, don't hesitate to ask!
I called my doctor and just asked if it was something to be concerned about and he advised me to stop taking the topamax and he was going to get me a script for gabapentin. I have to take a week off of the topamax before starting the gabapentin. He said that if I was having the twitches at the lowest dose that it would likely get worse as we increase the dose. :-(
TL said:
Hi Kate, I just went for a 2nd opinion from a new Neuro today and am switching to Topamax as I taper off Tegretol (lots of side effects). I was told all about the twitching and what to expect, it sounded exactly what is going on with you, I was told to not be concerned if I experienced them. Hope this helps. Welcome, there are wonderful, helpful people on this site!
I guess 'welcome' is a catch 22...I wish we didn't have to be here, but since we do, it is the BEST place to be!! We all understand the circumstances and try to help each other the best we can. Know we are all here for you, kiddo! ((hugs))! Cris