For TN Patients in Their 20s

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Comment by amberzak on January 13, 2012 at 4:48pm

I'm 28. Just been diagnosed. I was told by the doctor it's very rare at my age so he is quite concerned. He has also given me a number to ring if I ever contemplate suicide. I assure you all I am not at that stage yet. I'm generally a happy person and my friends have been really worried about me recently where I've been tired and in pain.
I have a wonderful loving husband who is at a loss as to how to help me. Bless him, he sits up all night with me when I'm sobbing in pain, and he has been running around looking after me.

I'm currently training to be a maths teacher. It's a year and a half course. At the moment we are learning the maths that from September I will be teaching. I really hope this doesn't mess me up with teaching.

Comment by susie evans on December 20, 2011 at 5:25pm

Been a long time since I've been on, I'm now a mummy to my gorgeous 10 month old son - I managed to come of the Tegretol completely until he was a month old! After that well, it's all been a bit hit and miss. I am now on 1500mg Gabapentin per day as the tegretol was making me far too drowsy with the little one and I've been doing ok until last week, I've had 5 big attacks in 8 days and really not feeling great! Hope you all manage to enjoy Christmas! xx

Comment by Mica on November 8, 2011 at 3:37pm

I am so glad I found this group! I am 21 and I have had tn since i was 16. Its gotten worse to the point where when it kicks off it feels more like ATN and ive also started noticing signs that could point towards the tn going bilateral!!!! I sometimes feel depressed about having tn not only because of the pain but mainly because of my age! if im 21 now and the pain is suicidal.....what is left for my future??? Do i even have a future?? Does anyone else feel like this??? And also....feel free to add me as a friend people! We all know the more people who have this we can chat with....the better! Hope everyone is ok!

Comment by Kristine on November 8, 2011 at 1:51am

I'm not 20 anymore but was diagnoised when I was 28, two and a half years ago. Right now I'm not on meds right now but still have small flare ups every week.

Comment by Becareka on September 28, 2011 at 10:08am

Hi! I just found this website, and am pretty psyched to have found it... :) My story is similar to most of yours-- diagnosed 2 years ago with the crippling pain, different meds, doctors etc.. The only off thing is that I'm in Azerbaijan where healthcare is... well.. lacking..HOWEVER, acupuncture is ridiculously cheap and works-- but it's rare that I can go get it done.

 

I just started Baclofen as a new option for treatment-- we'll see how that goes... I'm headed back to the states soon and am hoping for some good doctors...

 

It's so great to see you all up here living your lives like "normal" because I'm not sure how to live normally while I'm in pain, but it's really encouraging to see some of you doing it. :)

Comment by john quill on August 4, 2011 at 10:29am

I have not seen many posts from you "kids" all summer (anyone uder age 35 is a "kid" to me! LOL 

 

But I know that all of you have not been cured or moved on, so please don't forget to stay in touch, especially if you feel like the whole world is out having fun (it really isn't) and if you feel isolated. 

 

It must be scary to be a teen or even in your twenties and not only experience the severe pain and isolation, but to read about others who have endured it for years, or even decades. But you can survive and live a "life worth living" with this illness, and the fact that you're younger means you very well may live to see newer medications, and possibly even a cure for this awful affliction. 

 

I spent thirty years without even being diagnosed, and sometimes I wonder, as much as I THINK the "present me" would have loved to know more at a younger age, maybe it can be a bit overwhelming to know so much or rather TOO MUCH about this illness at such a young age. 

 

Please try to remember that knowledge, while sometimes scary, is POWER, and maybe it's better if you "take it in" in smaller "doses" but it's still a very powerful thing to know that you are NOT ALONE. I think this "shared" group would have really helped me as a teen, stumbling through the 70s when pain in almost any form was considered "in your head." No Pain, No Gain was the worst phrase ever coined! 

 

Okay younger people, I want to encourage you to keep doing whatever it takes, and don't ever hesitate to ask someone who's maybe "been there" if you ever feel you need help. That's really the only reason I joined this group: I didn't "give up" looking for a cure, but I realized that if one comes along, it will probably find me! I guess after four decades, maybe I've accepted living with this condition. If my episodes of pain ever did stop after all these years, it really would be quite terrifying in a way, isn't that crazy?! Hey, Carry On! (jqt)

Comment by Korie Leach on April 26, 2011 at 5:56pm

Hi! I'm Korie and I'm 20 years old. I've have TN since I was 9, but was just diagnosed at the end of February. My story is a little different because my TN comes from pressure on my trigeminal nerve caused by a brain tumor. My tumor is noncancerous and does not cause me much harm other than TN, vertigo, and the right side of my body is just a tinsy bit more numb than the left.

 

I had no idea there were so many people suffering from TN and I can't tell you guys how glad I am that I no longer feel so alone in this :) It has caused depression and anxiety in my life. It's so hard to get your friends to understand the immensity of the pain. You really do learn to isolate yourself, which causes me at least to be more depressed.

 

Right now I am on an anti seizure medication called Tegretol. So far I notice it helping with the day to day facial pains, but not the severe ones, that come for me before my menstrual cycle. Is that the case for any other girls? 

 

Happy to be here- Korie

Comment by tina corriveau on April 25, 2011 at 4:15pm

Hi all I am Tina and I am 23 years old. I was diagnosed just a few weeks ago with TN. After 2 years of misdiagnosis I went to a new dr trained in France and with in minutes of looking at me he knew it was TN. I am having a hard time dealing with it and my meds make me sick.

Comment by akash on January 26, 2011 at 10:24am

my social life 2 has been affected by tn. i have lost contact with all my clg frends except 1 or 2  as tn began in 2006 when i joined the clg.their frend request is lying pending past 7-8 months. i thought i was d only 1 who is goin through such bad social crisis but reading sm post here  i realised that a tn sufferer is reluctunt to be social. its true u do not want to be around yr frends in pain. while in my 3rd yr at clg(2008) when this TN erupted aggresively i  used to try my best to avoid any converstion . It happened on its own cuz a bit of talking would aggravate the pain..im having ATN n i wish  smdday i could explain them d reason for keeping myself "distant " from them

Comment by Amanda Micaela Cook on January 24, 2011 at 3:47pm

john i deff. agree with you. mine started when i was like 6 or 7 i thaught i was crazy because no one could give me answers and said i was perfectly fine

however there was a knife going in my face and i was confused

thank you for your input i appreciate it. my whole life has changed especially getting into my teens getting diagnosed and surgerys

I would love input from people who lived it while young

thanks a bunch

and god bless

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