On the 12th, it will be 10 years for me. I.got my first pain 2 days before my birthday. I’ll be 28 on Valentine’s day. I’ve had this disease my entire adult life… at this point, it’s progressed so much that I scream and bash my head again stuff, sometimes hardly realizing it… if anyone has had this such a long time- tell me: how much worse will it get? I know it’s progressive. I’m so scared of living with this another week, let alone another 40-60 years. I really hope I have a short life span. Do you think the constant stress and depression takes time off your life? I’m really, really counting on it. I.don’t want to do this anymore, but not willing to take my life. Just holding out for something better.
This April it will be 12 years since my diagnosis with TN…
I was very lucky in that after having bilateral TN for approximately 9 months I experienced a HUGE remission. 8 years on my right side and 10 years on my right.
I didn’t know much about TN back then, so when it left, I thought that was it, it was gone for good…when it came back I was shocked!
I didn’t believe it was progressive…unfortunately my left side has been.
My right side has been fairly quiet.
We all experience TN differently, from the pain to the meds and the treatments available.
I think there’s hope in that our experience with TN is so uniquely different, who knows what the future holds!
It’s not easy having this painful affliction and we all know, it’s not just the pain but the effects on all aspects of our lives.
Danielle, stress and depression affect us negatively, any way you slice it…but truth is we’re going to have stress and depressive type thoughts and feelings… I think it’s really important NOT to look too far ahead and try and take one day at a time, as best as we’re able too.
I’ve been re-reading Victor E Frankl’s book " Mans search for Meaning…
Many reminders in this book of how one can endure suffering and find meaning in life.
I’Il leave you with a quote from Nietzsche " he who has a why to live for can bear almost any how"
Huge ((( hugs ))) Mimi xx
Have you tried many of those topical creams in the post :
http://www.livingwithtn.org/forum/topics/taking-a-poll-here-please-…
I know you had MVD
I know you have TN 1
Have you ever had a second opinion with a TOP MVD surgeon?
There was a post here of a 13 hear old girl on Good Morning America clip, where she is having second MVD to fix TEN compressions.
Have you seen a TN doctor about PNS implant?
Have you seen recently a new posting here called
Nerve Combing?
Lastly for now, not for everyone, don’t know where you live, or your status, but many get relief with medical marijuna or regular marijuna .
Please think outside the box, and grab HOPE
onto other treatments you didn’t try, or were told not to try.
We are here for you!
My wife has had a mixture of Type 1 and Type 2 TN intermittently on both sides for 18 years. She has been stable on Tegretol or Neurontin for the entire time, with the exception of two outbreaks of Shingles which involved increased pain on the right side for several weeks.
There is no one path of progression or remission that applies to all TN patients, Danielle. Chronic face pain is highly individual. One needs to take the experience a day at a time, without expectations of a worsening picture. This isn't to say that SOME people don't experience worse pain over time. Quite a number do. But an expectation of worse pain is a stressor you do not need and will not benefit from embracing. So thinking outside the box is good advice.
Go in Peace and Power
I have had TN for 15 years. I had my first MVD 13 years ago, my second 11. Never, never give up. If you live in the US, I urge you to keep digging until you find a neurologist with a positive history treating this disease. I did the drug route first. But my body does not react to meds like most so those did not work for me. I opted the radical surgical approach. I never regretted it. Keep pushing back and keep a positive attirude. Some days that is all we have between us and this monster TN. Choooose joy, choose laughter, choose life on your terms, not being a victim to this disease. I am a believer that Jesus is bigger than anything that life throws at me. My faith helps me cope. I would be glad to pray for you to find the same power.
Just let me know. :)
Danielleq....I see that you live near Philadelphia. I suffered with TN for 8 years when I walked in to TEMPLE Hospital neurology dept. This was 30 years ago when getting a TN diagnosis was near impossible. God lead me to DR James Kenning. He looked me in the eye and told me I know what you have and I can help you. Dr Kenning trained under Dr Janetta who invented MVD surgery. I urge you not to give up and seek out Dr Kenning for a second opinion. It is now 30 yrs later and I have been pain free all of that time. Dr Kenning is still practicing, he was only in his early 30's when he did my surgery. He is now associated with BRYN MAWR Hopspital. Like you I was ready to give up but Dr Kenning saved my life and gave me my full life back. Please dont give up and seek him out. Good Luck
This year is 20 years for me. It is now to the point where I’m ready for MVD. Beginning to interview surgeons now. Finally diagnosed last August via contrast MRI at Rush outside Chicago by Dr Sepehr Sani. Even though the pain has not been addressed, it is such a relief to finally know what is wrong with me. So many years of pointless misdiagnoses, $30,000 out-of-pocket spent onTMJ treatment (insurance wouldn’t touch it). Intensity of the pain is steadily increasing with each attack. I need help now. I have two tiny kids and they need me. But I pray to die every time the pain hits.
I am going on my 9th year and was 28 when the symptoms first appeared. I went through many years without the proper diagnosis, not knowing what was wrong and very scared. I'm so sorry you are so young and dealing with this. I share your fears about having to deal with this for the rest of my life especially after having a failed MVD and not many other options at this point other than the drugs that make me non-functional. My TN has progressed and i'm no longer having any periods of remission and I honestly can't imagine it getting any worse than it already is. I wish I could provide you with some miraculous words of encouragement but sometimes all we can do is find solace in knowing we are not alone. -Laura
18 1/2 years myself.
10 years for me