TN Type 2 and quality of Life questions
Posted , 4 users are following.
I was diagnosed with TN type 2 exactly a year ago. Carbamazepine is working quite well for me. I had a horrible pain breakthrough when I had a root canal recently, and that horrible experience encouraged me to research what I have to expect in the future.
TN Type 2 is a more constant pain--I am not triggered by a breeze or by brushing my teeth. TN Type 2 is more rare, so I don't know if the research is based on a lot of patients, but the literature shows that a) the drugs wear off just like for everyone else and b) the different surgeries don't work as well.
Great. Good to know. I can't find anything else. So, how shall I plan to live my live if after the next 3-7 years I have no Rx or surgery options? How on earth do I go on living? Or working? And since I live in the United States, will I have to go through the horrible process of applying for disabiity and waiting 6-24 months to be accepted ... losing my home in while waiting? This is what is going through my mind these days.
Where is the information on maintaining any quality of life with this disease?
0 likes, 3 replies
lee12629 holly35803
Posted
patyrod holly35803
Posted
Hi Holly.
I know how you feel. I have trigeminal neuropathy, which is constant numbness of both sides of my face, scalp and inside of mouth. My speech and chewing and taste are affected. It feels like I have an iron mask on my face. There is not a vein or artery pressing on my trigeminal nerve. The nerve is inflamed. The inflammation is supposedly caused by an autoimmune factor. So, there is no surgery that could help me. It started a little over a year ago and since no medication has really helped yet, I fear that it is incurable. The neurologist and rheumatologist say that I am the only known person with this problem. Then, seven months ago, I came down with rheumatoid arthritis. I also have Raynaud's and vitiligo. So, that makes four autoimmune disorders.
However, I am very lucky because I am retired. I am so sorry for your situation. Keep on pushing the doctors for some additional medication and testing. Have you had an MRI to see what the nerve looks like? Tell them about your concerns for your future and that you really need to be able to work.
holly35803 patyrod
Posted
Wow, your situation sounds awful. I feel for you. I am actually doing OK for the moment. I work in the tech field, and jobs have gone contract, so having insurance is a big worry. I guess there is a sense grief as well that my regular adult and career is almost over for health reasons.
You mentioned RA. When I took an art class long ago I met a talented young art student who was diagnosed with RA at age 20, then he had to give up his life's dream. I guess I should feel lucky I had a career for a few decades before the disease hit.