I've been corresponding with my neurologist via email about my pain.
Though I've never received an official diagnosis, I've always suspected TN as the culprit for my head burning alllll the time.
I see this neurologist because I had a brain tumor removed two years ago, so we go waaaaay back!
Anyway, I sent him this diagram explicitly labeling my pain.
He responded with this:
"It is most likely a neuralgia from one of the nerves you encircled. I am not sure if the nerve block worked before."
He also told me to keep my August appointment with my neurosurgeon.
(we had tried a nerve block before, which I'm assuming is also used for diagnostic purposes)
I realize this is not a definitive diagnosis just yet, but I'm still not sure how to feel about it. I'm kinda glad I've gotten the official "yes, you could have this"
But it also kinda breaks my heart. I'm so young, and I realize a lot of people have full lives with this condition, but I can't help but feel like it's an even bigger roadblock to deal with then what I've already had thrown at me.
I just graduated and I should be in my prime, ready to start my career, but now I don't know if I'm going to be able to do any of that :/
I am still dealing with mine. I was diagnosised ten weeks ago. I find the medication almost as big of an obstacle as the TN. I hate the side effects and limitations the Carbamazapine puts on my life. I am an educator and find the mental dullness and dizziness so frustrating. I have decided I will try to find ways to news ways to live my old life. I hope you can find the same. All the best.
I really feel for people who live in countries that are user pays for everything :( I have bawled my eyes out at Dr Oz's free clinic shows and what some people have to go through because they can't afford medical help :( I don't know how your system works so I can't offer advice but I do hope you find some assistance. I don't have an "offical" diagnosis either though so far I have had a few GPs, medical specialist and an emergency doctor all slap me with the TN diagnosis though it seems that they can't really say unless a neurologist says so. And the one that saw me in hospital said that if it's more than a few seconds it's not TN and also that the neuralgia in my arms wasn't the Tegretol ... he was wrong, it was the Tegretol which makes me think he is wrong it's not TN (and we all know the pain can last a LOT longer than a few seconds on this website!!!). I am seeing him next month and dreading it, I might have to pull out my right for a second opinion!
You do find ways of coping, sometimes not so well, sometimes well. This site helps a lot! Are you eligible for disability allowance?
Cassie, I urge you to take a look in the FACE PAGE INFO at the top of the page, there are articles within it about help for low income households gaining help with medical costs. Also you could put keywords in the search box at the top of the page on the right. I have seen many discussions where members talk about the help available to access meds at low cost. I have never lived in your system so I feel helpless to give more help. Good luck!
Cassie said:
I don't know what to do....
I don't have health insurance and the meds they want me on cost way more than I can afford each month.
How does anyone live through this condition without insurance or disability assistance? Is it even possible?
Sorry to hear you have to go through this so young,
Looking back I had symptoms when I was 22. Mum reminded me the multipul trips to the doctor about the "headaches in your face you used to get"
There is a process that the Nurologists go through with drugs and you having one that you know well and trust is a great step ahead of most.
If you do get a final TN or ATN diagnosis then it is not the end of the world. Or the end of your life. I know that many or most on here have huge issues and its debilitating but there are also a very large number of people with TN that once they have good drug therapy can live a life (I wont say normal.)
I have a very high strees job with a multinational company and have not had one day off due to TN aside from the time for my MVD. I get out and enjoy life as much as I can. I try as much as I can to not let TN rule my life.
I suppose what I am trying to say is in spite of TN I still manage to have a decent quality of life.
You said you had Brain Surgury before?
I would ask the Nurosergeon very carefully if any nerves were cut. I am going out on a limb here but reading other threads here recently the pain sounds the same. Or Could there be any effect from the past surgury that could have caused your current issue?
As to no Health insurance. Thats a difficult one. we have "Medicare" in Australia and every single drug I get prescribed is NOT bloody covered. it seems my highest bill each month aside from the mortgage is Drugs.
Yeah i had a golf ball sized benign brain tumor removed from my temporal lobe in June of 2010. The mass was on the inside of my temporal lobe near my brainstem. When I look at my MRI, it looks to be in an area where the trigeminal nerve runs, so it's possible it was damaged. I plan to ask if my surgery could have caused this or if it is just a really, really specific coincidence.
Thanks to everyone for your information and stories! It helps me a lot to read about the success people have had, even with this terrible condition.
I will keep you all posted on the diagnostic/medication process. My neurosurgeon just called in a script for Depakote, but I've never tried it before so we'll see how it goes!
THANK YOU!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
-Cassie
SimonL said:
Hi Cassie
Sorry to hear you have to go through this so young,
Looking back I had symptoms when I was 22. Mum reminded me the multipul trips to the doctor about the "headaches in your face you used to get"
There is a process that the Nurologists go through with drugs and you having one that you know well and trust is a great step ahead of most.
If you do get a final TN or ATN diagnosis then it is not the end of the world. Or the end of your life. I know that many or most on here have huge issues and its debilitating but there are also a very large number of people with TN that once they have good drug therapy can live a life (I wont say normal.)
I have a very high strees job with a multinational company and have not had one day off due to TN aside from the time for my MVD. I get out and enjoy life as much as I can. I try as much as I can to not let TN rule my life.
I suppose what I am trying to say is in spite of TN I still manage to have a decent quality of life.
You said you had Brain Surgury before?
I would ask the Nurosergeon very carefully if any nerves were cut. I am going out on a limb here but reading other threads here recently the pain sounds the same. Or Could there be any effect from the past surgury that could have caused your current issue?
As to no Health insurance. Thats a difficult one. we have "Medicare" in Australia and every single drug I get prescribed is NOT bloody covered. it seems my highest bill each month aside from the mortgage is Drugs.
Everytime I've applied for Medicaid or something like it, the say I don't qualify because I'm too young and I haven't paid enough into social security :/
I don't know if this will change once I'm officially diagnoses, but I've sent away for all sorts of prescription drug cards and whatnot....and I've been approved for financial assistance through my hospital/clinic, so that helps a little.
I'm hoping I can just find a job that offers benefits...I'm in the market for something more grown up anyway since I just got my degree.
Heather said:
Hey Cassie, I am going through some insurance crap, too. Can you not get Meidicaid?
Don't lose hope already! I know it's a huge blow, but as I have learned, there is just not a quick fix and get on with life for many of us with this. It is crappy, plain and simple. I hope you have some support and of course, you always have us here! I am struggling with accepting my diagnosis. Especially since my neuro can't seem to make up her mind! I do believe I have had this for many years and just had no idea. It is easy to dismiss many of the symptoms as dental stuff, especially if you have a lot of dental problems.
I was thinking today, what if this degree of pain is my new normal? How am I going to re-arrange my life to cope and keep moving forward? Then I keep saying to myself, NO! This CAN'T be my life! I'm 37! May seem old to you but trust me, it's not! So, I am thinking acceptance is the very first thing we have to try and gain. We have no way of knowing what the future holds. I guess we try to take it day by day, do the best we can, and respect our new limitations. Try not to look too far ahead and predict the future.Many of us here are holding on, trying to take a step at a time. Even if they are baby steps, or 1 step forward, 2 steps back. You are not alone in your journey. We are with you in spirit. Keep reaching out, too. Hugs!
