I'm new to this website, so this is my first blog post here. You can read my story on my page, but I've had TN for almost 9 years now. For the most part I have been able to control my pain with meds until this year. I'm not in pain every day, all the time, but when I have an episode it's a huge episode. I am on 12 pills a day now and just had my first steroid pack for this. I had the worst episode so far this past week, 5 days of not being able to talk, hardly eat, and hurt like hell to swallow. My tongue was setting it off. Crazy.
I came to this site looking for emotional support. No matter how many times I try to explain to other people they just can't understand this pain. No one can unless they've experienced it. My husband has been so super supportive and there for me, but I know he doesn't really get it.
I look forward to getting to know you and relate to what your going through too.
Welcome...you will find great support and information here. No one can understand the pain that you are experiencing except another person with TN. Most people think that you are exagarating that the pain cannot be all that bad. My wife was the only one who had a idea how bad my pain was for 8 years. She could see the pain in my face and when I look at pictures from 30 years ago I can feel that pain again. I had MVD surgery in 1983 and have been pain free since after suffering brutal pain for 8 yrs. I wish you the very best in your journey to end the pain. There are many options out there and you will see many stories on here as most of these options have been tried
Your symptoms are similar to what I had experienced but the mandibular branch of the TN was not involved, only the maxillary and ophthalmic branches. I had a great amount of pain on my lip, eye, cheek, and forehead. The first 2 or 3 years it was bearable, and being a chiropractor at the time I had access to a lot of the natural remedies and basically approached it that way using acupuncture, adjustments, laser treatments, herbal remedies, vitamin b12 injections, etc as well as being on carbamezapine and lyrica. The last 2 years I kept thinking that the pain may have connections with a cyst they had found on the original mri when I was sent to rule out a tumor in my brain. The cyst was benign in my sinus but right where all or most of my TN pain was located. 3 years later I had them repeat the mri but this time also run a mra which contrast media is more able to visualize the arterial component and if it's pressing on the trigeminal nerve. It was in fact contacting the nerve and at that point after hearing this news I knew that I had to look at the surgical options if I was ever going to get relief. My research brought me to a Dr Michael Alexander at Cedar Sinai Hospital in LA who was one of just a handful of surgeons using the minimally invasive endoscope to reach and visualize the nerve while performing the decompression. I retrospect, just my own theory is that a part of the reason that there are failures with the mvd surgery is that there is a lot of disruption of the surrounding tissue because of the size of the scope as it penetrates the site where the compression is located. At any rate, am now nearly 4 months post surgery and I feel very blessed that I can say that I have had no symptoms related to the TN. I don't feel like it is just in remission, I really do feel like the surgery was a success. If I can give someone hope that there are options rather than just medicating and living with the pain, I will continue to tell my story.
Hang in there!! If there is anything I can shed lite on or answer regarding my care, condition, or surgical experience feel free to email me!!
I am a newbie and I find it encouraging that you have been able to control your pain fairly well with meds for such a long time. I am having good success with tegretol but still have little jolts and weird feelings. I find the emotional side of this to be hard --the fear and worry about the future. Have you been able to live a pretty normal life with this? I had all the stuff you are talking about before I was diagnosed-- couldn't eat, sleep, drive in a car, talk, even cry. It was awful. Hope you get everything under control again soon!!
This site is amazing! I am also new to this page and signed up for emotional support as well. This pain is awful. You are exactly right, no one understand this pain unless they have this. I am sorry that this week has been awful for you. You have come to the right site that's for sure!
Thanks, you too!