I was diagnosed with TN only twp days ago. i had intense pain like i had never for three days prior to my diagnosis. 2 yeara ago i was diagnosed with a rare, terminal blood clotting disorder that caused 4 veins in my left arm and left neck to be completely occluded (no blood flow) which cause severe chronic pain to my left side. My TN is also on the left. I’m only 25. I don’t know what I’m looking for on this group but, I hope someone has it, or can give it. I really do feel lost. And scared and angry. And so overwhelmed. I’m not usually a “why me?” person. But, I am right now. I don’t know how much more pain I can endure, why I have to, why me, why us? I have only told my less than supportive family about this condition. None of my close friends, yet. I know support from others who actually, truly understand won’t “fix” anything. I just need to feel SO lost. I don’t feel like life is worth living if all i can expect is this amount of pain.
Run…don’t walk
To get to dr. Ken casey in Michigan… One of the godfathers of TN,!
He will give you your best options!
He changed my life…i flew from Missouri to be a patient of his.
Also get his book
Striking Back
Learn all you can
Kimberly
Email me if you need
Also here is something to help…
Thank you for the recommendation of the Dr. I’m literally going to look him up as soon as I finish typing this reply. I was lost to what kind of doctor to even go to, let alone knowing someone has been to him and had it go well. Its very encouraging to hear. A very small PART of me believes I will get thru this, “accept” it, and learn to live as normal of a life as I can with it. I just can’t seem to find that part,right now I guess. I don’t want to live in this “lost” place, its just where I am now. The link helped me understand that a little more too.
thanks again.
a
Let us know if you can get into casey soon!
If you can't get in to Dr. Casey soon, there's two other surgeons I know of who are really expierienced with TN. I see the latter:
-Dr. Mark Linskey @ UC-Irvine
-Dr. Justin Sweeney @ Mercy Hospital St. Louis (will be doing my MVD this month)
Another essential is a good neurologist and possibly pain management specialist. Do you have a cardiologist? If so, make sure they are in the know of everything. My EP doc (arrythmia specialist) has been great helping on the cardiac end of things with all the meds and the like.
Trigeminal Neuralgia can be scary. I know I was right after diagnosis (offically diagnosed in October, 2013). Some of the best comfort measures i've found are:
-Heat (heating pad)
-Rest
-Distraction (like computer games or school work)
-Netflix
Doing whatever you can to take it easy and avoid triggers will make your life more comfortable. Let me or anyone else know if you have any questions. We're all here for you!
Ron
Hi Ashley, welcome to this wonderful site, full of very loving and supportive people, we would all be lost without one another, I hope since you wrote on 10th Nov you have got some help? and that you are feeling heaps better…
It’s awful to come to the realisation that you have TN and it may/may not ever go… but, lots can be done, medication may well work, and there are several operations that can be helpful, you will hear lots of people mention MVD, this is a very invasive operation, that for some is very successful, but others not, it’s a matter of finding what works for you…so there will be ups and downs over the next months, while things are sorted out, I wish you lots of luck, and many pain free days ahead,
Re: your family and friends, get them to read all they can about TN, because it’s impossible to explain to someone what your going through, so they have to learn about it, there are lots of sites where they can get information/diagrams, well Ashley I hope that helps, let us know how you go.
Hugs Anne