GIselle, sorry, my medication last was trileptal, sorry for that confusion, again best Bunny
Lol, you don’t sound arrogant. I really appreciate your advice. I mean, YOU KNOW, you’ve been there and you are there. How could I not listen to someone like you? I don’t care the way you talk or try to make a point, I will take advice from anyone who has been living with this. No one else knows nor understands.
Thank you very much!
Hi Bunny! I’m so sorry to hear you went through two surgeries. Are you okay now? How are you feeling? What type of surgery you had?
Thanks so much for your kind wishes
Hi Gisela. Absolutely the worst pain ever!!! I have had it off and on for about 10 years and as a professor there were days when I would start my lectures with excruciating facial pain. I had an attack once while teaching graduate students where I could nor talk and they called 911 thinking it was a stroke. I have been on Carbamezapin (Generic for Tegretal–much cheaper) with dosages from 200 mg up to 1200 mg. It works; however, sedated me and since I have MS created balance issues. OK, what to do? Have anoutlook that it can get better (yes, suicidal thoughts are common) but it can get better. I finally went with Gamma Knife and had relief for about a year, then it TN reappeared with a vengeance, and now I am on my second Gamma Knife and have been pain free for about 14 months. There are several other treatments, e.g., surgery, ambulations and other medications which I may have to try if and when the Gamma Knife fails. Sorry for such a long reply, but I want you to know we “understand your pain” and you have to be you own advocate and researcher.
Hello and nice to meet you. I love long replies (cant you see? lol) so don’t worry.
I’m sorry to hear you had this for ten years, it is a very long time so you’re a super strong person.
About the meds, can you manage your dosage? I cant, at least for now (i could just shove the entire box down my throat right now). I haven’t had any side effects, except for the sleepiness, i feel very sleepy during the day.
How was gamma knife for you? I read a lot about it and there’s a lot of opinions, i would love to know about your experience.
Thanks for taking the time to write me! Have a great day.
Hi Gisela, my only consolation to all of this is that I’m older (70 years-old) and didn’t have to bear this TN and MS throughout my life, it all seemed to occur about 10-15 years ago. One silver lining for you is that they should have better treatments in the future. Here is my answer to you managing meds. The docs will tell you what dosage, and I could’t go against what they recommend; however, being somewhat of my own advocate, if a day was unbearable, yes, I would take more and personally within about 5-15 minutes the pain would subside. The biggest problem is that there is a danger when your taking Tegretal (Carbamezapine) to suddenly withdraw can bring on seizures. So again talk to your Neurologist, ask “written” questions, be you own advocate, and do your research. As to Gamma Knife, I read up on it, and originally suggested it to my Neurologist who wasn’t too keen on it and just wanted to continue with meds with a possible referral to do surgery (which if the gamma knife fails, I will pursue). I searched around and found those who were using Gamma Knife in my area, and went to them. The procedure was uncomfortable especially putting on a “cage” to keep my head “still” during the procedure, then another MRI, then the Gamma Knife, similar to an MRI. The whole procedure took about 5 hours and I went home after that with no complication; however, I experienced slight shocks for a few weeks, but minor compared to where I was before the Gamma Knife. Please do your research, have written questions for you doctor(s), and don’t be afraid to go to another doctor for another opinion. Best of luck and I’m here to answer any other questions. Take care
Hello again :). I hope you’re having a great day.
For now, i was taking exactly what the doctor said but, i think over time i will learn about the drug, its side effects and over all: my own body, so i can take as much or as little as i need. I didnt know about seizures, i dont think i read it anywhere, its a good thing to know.
My most important question about gamma knife is: do you experience any numbness or tingling, any lack of feeling on any part of your face? I heard about a neighbor who have had surgery and half of his face is totally numb and “melted”, he lost total control of his face. I dont know what kind of surgery he had but people keep telling me “dont get any surgeries!!!” because they all know him so i wanted to know which surgery could have this outcome. I know he lived with TN for a lot of years and then this surgery went really bad. Any knowledge about this?
Any surgery sound really scary but GN (with a cage and everything?!) seems like the scariest one for me.
Thank you again
Hi. You are so young. I can’t imagine how you must feel having to deal with this in the prime of your life. I was 53 when diagnosed. I had MVD only 6 months later. It was kinda scary, but best decision. It was very successful for years, but eventually came back. Not as bad as before, but I am unable to work because talking is my biggest trigger. Some days are a lot better than others but I just never know. All this to say, don’t be afraid to have the MVD. My doctor was great and I would do it again in a heartbeat. Praying for you.
Hello Cheryl . I am “young” lol. Yes, I know I am young and people get diagnosed with this at older ages. I don’t think I will be able to have kids or things like that. I was planning though, but I can’t raise another human that needs my WHOLE attention if i’m crawling in pain, not even with help. I think you need to be your best self, and I don’t think i am right now. That’s a shame.
I am glad to hear MVD helped you a lot of years even though it came back, you had years of relief and that’s awesome. Its better than taking one hundred pills a day and being all dizzy and stupid. Now are you taking any medications?
Thank you so much for you kind words and prayers , all of you are in my prayers as well, and I wish you nothing but painless and happy days!
Oh friend don’t give up on kids yet. HE IS THE GREAT PHYSICIAN. I take Carbamezzpine mainly. I would have MVD if I were you as I said I am much better than before the surgery. Praying for you.
Thanks Cheryl. Have a great day and weekend!