I’m sitting here once again and I can’t sleep because of the pain and I’m wondering why?? I’m 37 years old. I’ve never had any major health issues. I’ve been very healthy and active. I was a long distance runner before being diagnosed. I had an mri last week and it showed nothing. I was convinced that it would show something…anything. There had to be some reason for the pain. How can u go from a perfectly healthy individual to having this excruciating painful condition? There’s got to be a cause for this! It’s so frustrating to not have any answers.
I was 39 when diagnosed with TN and also very healthy. My MRI showed nothing as well. There are some theories, but there are no concrete answers to “why.” Last month I had an MVD. They did a MRI prior and it showed only one little artery pressing the nerve. But, during the surgery, they found several compressions. So technically, that caused the pain. I suppose our wiring is just a little messed up. That’s the only conclusion I can draw. For what it’s worth…
I encourage you to find a very experienced MVD surgeon and consider having the surgery. I went to Dr. Sekula at UPMC (Pittsburgh). One month post MVD and I am doing great! Best of luck to you…
Hi Cara,
It is very frustrating not to have any answers. You are not alone in how you feel or in the situation you have been dealt. I first had this when I was 29 and it came back when I was 37. I'm now two years in with bilateral ATN. I don't have any answers either. My MRI/MRA were clear. I met a neurosurgeon who offered me no help. I have finally found a good neuro who is the first DR. I have met that understands what I am going through. But he told me to stay away from all invasive procedures and that this is to only be treated with medication.
I feel like it is a grieving process, coming to terms with having an invisible, incurable disease. I am slowly coming to terms with it somewhat. I don't have the same health anxieties that it used to give me. I have had the tests. It isn't any of the other things. I have gotten to know some of my triggers and cycles better.
I wish I had answers too. I just wanted you to know that you aren't alone with how you feel.
Jane
Thank you, Jane. It helps to know I’m not alone.
Hi Cara, I get it. I started having TN pain in my early 30's and am now in my early 60's. I have never been sick in my life. I thought it was dental, had that checked, it wasn't. I was finally diagnosed. It comes and goes, but for the last few years it is here to stay. Medication has become a permanent part of my life, but it helps. You just have to find a mix that works for you. Mine is NORTRITYLINE, NORCO AND FLEXORAL. It is different for everyone, but don't give up. A lot of times, when think it is under control, it comes back to remind me that it is here to stay. Yes, it is a nightmare, and I have had to cancel and postpone social engagements, but your family and friends will come to understand and be supportive. It isn't easy, but it takes time and there is always help on this website. Hang in there!
Debbie
Dear Cara..You are asking the questions we have all asked ourselves and others.
Delayed effects from trauma, dental procedures, etc but the reality is that we have it.
It may sound crude at first, but one psychological approach to this monster is based on the 5 step
Kubler-Ross model on the stages of grief and lost: 1- Denial, 2-Anger 3-Bargaining..4-Depression
5-Acceptance . The stages weave in and out of each other. They are not independent steps. It
isn't easy but it may help. internet search will explain this model and alternatives. There is a lot of info out there.
I believe the model is discussed on our site site.
I just found the site. Go to groups, enter Stages of Grief and you will find further info..I should
have checked beforehand. Our site just about covers it all .
Hi Cara, I’m still up too, I can’t sleep, I’m actually in bed, listening to my husband sleeping away, and I’m on our site, where I know I will find comfort and support…
I too was healthy and active, I competed in field events too in my younger days.
Don’t despair, my MRI was clear too, but I did have the operation, and my surgeon corrected 5 veins touching the trigeminal nerve, unfortunately my op wasn’t successful, but I would encourage anyone to have the op… It very well might work for you.
If you read lots of other letters you will find that their TN started after dental
work of some sort, that seems to be the usual cause?
Hope you have some success with medication?
hope you fall asleep soon, me too,
Hugs Anne
I just re-read my message, and it sounds as if my husband is not comforting and supportive, which is completely the opposite… He’s a beautiful man, loving and always there for me, I couldn’t do this without him…
(Just wanted to clear that up) lol
Lets hope tomorrow is a pain free day. X