I tell you guys - living with TN really puts a damper on the fun of life huh! My pain began only 2 1/2 months ago (nothing like some of you who've been suffering for years), and I've been on 3 meds - Triliptal (major allergic rash - but was getting some relief), Gabapentin (not much relief at all, but at least no reaction), so my Neurologist added Lamictal, which seemed to help some even at 50mg daily, but then I increased it like I was suppose to and BAM, another horrible rash (yeast like, from the tops of my thighs to the top of my head, yep, pretty much everywhere) so now I'm on a steroid pack, mega dose of Diflucan (for the yeast) and the lovely Gabapentin (that only makes me drunk feeling). I've had my General Physician poke around, Sinus Specialist look and do a CT of sinus cavities, 2 different dentists look, poke and X-ray, 1 oral surgeon poked, whacked, scraped and did a cone X-ray and then my Neurologist ordered an MRI - all with NO evidence of whats causing this ridiculous pain. I have an appointment with the Neurosurgeon on the 4th of September, so I'm trying to stay hopeful - but I tell ya, I'm beginning to get down and lose hope that I'll ever have permanent relief of it.
I need someone out there to tell me that there is hope in that surgeon's office (aside from the drilling a hole in my skull!)!
I am 41 and after a full hysterectomy just a few years ago, had just began to get my fun life back.
I had some rash with carbamazepine but as little that it helps, it does help. Gabapentin took me months to get used to because its pretty light on the pain releiving scale too. All the little things add up. Hang in there and try and relax. stress is a killer!
You should read "Striking Back" if you have not already. It is in many ways the TN Bible. I was desperate and pretty down at about the 2 month mark of my symptoms and diagnosis last year. Everything I read about my future with TN convinced me that I needed to do everything I could to not let this progress. I am 45 now, so similar to your age when I was diagnosed at 44. I did have the MVD surgery (where they drill the hole in your skull) done by Dr. Ken Casey. He is one of the author's of the Striking Back book. I had the surgery last October after suffering through the pain and horrible med side effects for 9 1/2 months. I have now hit 9 1/2 months since my surgery and I am 100% pain free and med free. It gave me my life back. Please take the time to read this book and consider all the options. The book lays them all out for you with all the pros and cons.
I feel for you! I had my first shock four weeks after my hysterectomy. I was dreadfully anaemic and coming off enough hormones each day to treat an elephant. I was soooo looking forward to just getting better after years of hell and then bam! I have come to the conclusion that life can well and truly suck sometimes.
Pretty Down I hope for you the clouds will part soon and God will send the rainbow. I am learning I do better, when I accept, take another breath and know it will get better.
Kristykins. Sorry you are having such reactions to your meds. It sometimes takes awhile to find the right meds that are suitable. I got skin rash from Lyrica once the dosage was fairly high. I also know it is scary at the beginning of TN because nobody seems to understand. I still have trouble having people get what the heck I am suffering from. It does put a damper on your social life. I have had TN for well over too many years to count before diagnosis. Please get a copy of dr Ken Casey’s book of striking bsck. It will give you good insight and look him up on Google and see his interview. I met him at a TN conference in 2008. His book will get you most information on all procedures and medications and side effects. It is a lay bible for us with TN.
Don’t lose hope and keep smiling. You may have to smile within your mind if the jaw hurts too much.
Chippy
Thank you all for your kind words of encouragement! I'm generally a very bubbly, friendly, smiling person, but it sure does get tough to be me when I feel like I'm getting zapped for it!
I finally decided to order the book (because of high accolades from you guys) , so hopefully I'll be thoroughly prepared when I see the Neurosurgeon next month. The doc I'll be seeing is listed on this site as well - so another bonus in my book! His name is Dr. Merical (pronounced Miracle - so lets hope his name stands true!).
I am so glad to hear that there is light at the end of the tunnel and that you're doing well! I have ordered the book, so hopefully it'll be here in a few days! I'm a believer in "knowledge is power" so I want to be totally prepared to see the Neurosurgeon in a few weeks!
I had some horrible break through pain today, never have I ever hurt so bad! It was constant shocks so intense that I felt like my face was going to explode, then that was followed by my face tingling for a long time. I see the Neurologist again tomorrow - can hardly wait to see what other med I'll be allergic to (sarcasm)!
mybell said:
You should read "Striking Back" if you have not already. It is in many ways the TN Bible. I was desperate and pretty down at about the 2 month mark of my symptoms and diagnosis last year. Everything I read about my future with TN convinced me that I needed to do everything I could to not let this progress. I am 45 now, so similar to your age when I was diagnosed at 44. I did have the MVD surgery (where they drill the hole in your skull) done by Dr. Ken Casey. He is one of the author's of the Striking Back book. I had the surgery last October after suffering through the pain and horrible med side effects for 9 1/2 months. I have now hit 9 1/2 months since my surgery and I am 100% pain free and med free. It gave me my life back. Please take the time to read this book and consider all the options. The book lays them all out for you with all the pros and cons.