Suffer with Trigeminal Neuralgia, but is that who you are?

Trigeminal Neuralgia and Cluster Headaches have been part of my life situation total 12 yrs. It started with off and on attacks for 10 yrs and the last 2 yrs daily attacks and/or symptoms. Most of 2011 I was scared to death to do anything (like chewing my food etc,) then I realize that I was actually not living my life. I kept telling myself and listening to my thoughts that I can't do this or I can't do that. Yes I have TN and CH but that is not who I am. I have Vertigo also but this is not who I am either. So I said... Self, it is what it is. I can't do nothing about the way my heart beats or the way the blood runs through my veins and now I can't do nothing about the pain, shocks and stabbing in my brain and/or face. I've found ways to vent my feelings and thoughts with support like this wonderful site and also my own website. I was determine between pains that I was going to remain sane and positive while I live my life! The pain is not gone and it may never be gone but if I can help and give support one person who is going through what we are going through then I am o.k with sharing my life with Trigeminal Neuralgia and Cluster Headaches...but it is not who i am... I AM...that's it.

According to some, you have the top 2 pain known to man. It's so easy for the fear to run your life. I think self is genetics, experience and environment with a dose of culture but with always the ability to change or adapt. After 12 years with major depression I am not the person that I was. But then I wouldn't be, depression or no. I do feel my life getting even smaller and am still adjusting. I don't think who you are is what you can do or what you look like.

You are at a place where I am not, yet. That's encouraging and I find a lot of people here that are doing things that I would be reluctant to do at this moment in my life. I was diagnosed 2 months ago and the meds are working, but the side effects are difficult. I am already tired and this journey just started.

Thank you for a look into your own journey.

Thank you for your reply. You said the you feel like your "life is getting smaller" could you explain that to me?

If you don't mine me saying, your life is the breathes you take everyday which does not getting smaller. Our life situations might change because of our illness, loss of friends and/or work but that does not have anything to do with who we are. I found out that as we grow into different situations we might lose certain relationships but that does not make our lives any smaller. I love your statement that " I don't think who you are is what you can do or what you look like" because this is so true! Where I am at is not a place, it is what I choose to think. I don't let my thoughts choose how I feel. If you are a reader, can I suggest a book called "A New Earth by Eckhart Tolle" it's a great read. Thank you and have a wonderful day!

I try not to let Tn rule my life. There are days where it surprises me tho. The carwash ... The spray ran over the back of the truck and I was coverin my ears in a HURRY. OUCH!!! My life is forever altered..... I didn't have my ears plugs with me.

There are some situations that still catch me by surprise because I don't know they are going to effect my ears. But for the most part my pain is controlled and I try to have a positive attitude every day. There are people who are still struggling to find that sweet spot, so I am thankful for this. My wish is that we all could be cured with that magic pill right now.. in a perfect world...this would be so...

Peace and best wishes to all my TN friends. Min

I am in a place just trying to adjust and also planning for the future. In getting smaller, I have already adjusted to treatment resistant major depression in a profound way that everything excess in my life had to fall away just to get through the days. All hobbies, interactions with others etc. But depression makes optimism not always possible - it's part of the disease. Now I can't drive or read because of the TN drugs. So I make alternate arrangements for doctors appt and listen to books on tape. I know intellectually that I am not that person but emotionally it's a whole other world when depression is so bad that the only thing that I can do that day is get out of bed to go to the bathroom. The depression was not caused by having TN. I've had the depression for sooo long. I've been on EVERY anti-depressant, even tried ECT. This was long before TN. So putting pain on top of that is just another straw. I am coping. But this depression is not situational. I actually have a great husband and a great marriage. I am not alone in all this. I do things like meditate, and listen to music that helps the mood. I have been in years of therapy. I have done everything and now just wait for the next med to come out to try.

However. The new med I am on for TN, Trileptal, actually has regulated my depression. A low level, grant you, but the super low times are fewer so in that way it has actually helped. That super low is a bitch, let me tell you. But I have to make trades. Driving or pain, super lows or reading.

It's not that I am afraid of the pain, just unable to live my life because right now this IS my life but not me. I have a very active imagination and inner life. My outer life just feels a little bit smaller as it goes on. I have actually read books by Toll and I think they help many people. But for me, I can see how they could help, but major depression, in my case, is not a treatable illness - right now.

Now, if you don't have major depression or going through depression, I would say - yes, don't let TN stop you from living your life. TN is not who you are. If you have major depression, I would say. Cope and take care of yourself the best that you can, it will get better (for most people) and try not TN rule your life. I am not a religious person so faith does not work for me, but it helps others.

I do like to read how others are doing and your epiphany does make me hope. I really am glad for everyone that don't let any disease rule their life. I am not saying my pain is more real than yours at all. Only that it gives me hope that I may be able to get to that point.