For TN Patients in Their 20s

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Comment by Sara Biscoe 1 day ago

I just turned 30, am I allowed to join in the 20's? :)

Comment by Desiree Wilcox on July 10, 2010 at 10:40am

Does anyone else's pain get set off my talking?!? This scares me since my job requires a lot of talking! I have off until this Tuesday (the same day as my neurologist appointment) and I am so fearful that I will be in constant pain and no one will understand.. :( My pain in calmed by heat.. I am getting a heating pack today to keep by my bed. Although this seems like the worse situation possible to me, I am very thankful for getting answer SO soon.. I realize I am very lucky...

Comment by Janet Elg on July 10, 2010 at 5:28am

Wow your lucky to be getting in to see a neurologist so soon. I say my dentist 12 times in a year and a half because my teeth hurt, and everytime i went they couldn't see anything on xray. then i saw allot of doctors until someon finally suggested it might be tn. Then i was determined to see a neurologist, it took 10 months, then when i saw the specailist they were an asshole. I also have a ct scan and mri while i was waiting. soo good for you to be getting it all figured out. My pain is in both ears, my eyes, my teeth and my throat and nostrils feel like they're on fire, the pain moves from one place to the other and lasts for hours. I hope this helps

Comment by Desiree Wilcox on July 9, 2010 at 8:58pm

Hi everyone. I am almost 21 and just getting symptoms that doctors BELIEVE to be TN. I have an appointment with a neurologist Tuesday. Do any of you confuse your pain with tooth pain? This is my main concern. My dentists believe it is not tooth related, but I will not know until Tuesday. I am trying to find answers before then. Any help? What are your symptom like? ..Sometimes I have constant pain (like 36 hrs straight), or I have none with a couple shocking pains that last 5 minutes. It's so confusing....

Comment by Janet Elg on June 27, 2010 at 10:46am

I've had pain in my face since I was 16. The pain started in my bottom lip right around the time i got my labret pierced, i kept the jewellery in for over a year and the pain got worse. I eventually took out the jewellery but the pain didn't go away!!! i was pissed cause by then i had already lost the piercing hole. The pain continued for a few years but not too bad. But once the pain got to the point that i couldn't take it anymore i had to figure out what it was. It took a year and a half of actively going to doctors, dentists etc., to get diagnosed. When i finally saw a neurologist he said and i quote "i don't think a little face pain will keep you from working". Its not just a little face pain!!! if it was i would've given up and wouldn't have subjected myself to going to doctors to have them say "i don't know". Having a doctor say i don't know isn't very comforting. A year ago i quite smoking for 7 months, the pain got 5 times worse, so i started smoking again. Everyone was like what got you smoking again?! they were all mad that i'd started again but screw them, smoking helps me deal with it, i'll quit again when i'm ready. okay that was my rant for now, thanks for listening

Comment by Alana Cowell on June 17, 2010 at 12:51pm

Im only young, not even in my 20's yet, im only 17. Ive been diagnosed with atypical TN about 2 months ago but ive had the condition for about 8 months now. Since I first started getting the pain my condition gradually got worse, then over the last few months the rate of which it worsened speeded up. The pain used to just be on the right of my face around the forehead but over the last few months it spread to the whole of my face through all three branches of the trigeminal nerve. I finally went to my GP in May and he diagnosed me and put me on 200mg of carbamazapine, which im still on to this day but unfortunately its not working at all and im worried that if the dosage is increased any more then my performance in school will decrease and put my A-levels at risk. Another disadvantage is that the main trigger for me is, unusually, heat. And as its now summer everyday is a full day of pain. Im going to back to my GP soon and ask about having an MRI because I want to know whats causing this and some other neurological problems ive been having for example extreme fatigue (not related to medication), weakness, loss of balance and coordination, memory loss, other shooting pain similar to the neuralgia but in the back of my neck, down my back and across the shoulders. This pains also triggered/worsened by the heat, everyday is a struggle but this heat sensitivity is new and I want to get it checked out and hopefully find something to help.

Comment by Susan on May 27, 2010 at 2:36pm

Hi guys, I'm a bit luckier i think being 27 i have already established friendships and i'm very fortunate that my friends have been more than understanding about my 27. However i can completely understand how different this could be if i were in my early 20's. All i wanted to do then was party and so i don't know if i'd be so lucky were it a few years back. Who knows??? I've had TN since last August and it's definately been difficult not being able to do the things I could. Especially in terms of ahem, 'drinking'. But I invited all of my friends around to my house the other week and we went and saw a reggae band, i drunk non alcohol drinks and we were home by 10pm. Now, usually it'd be a rock band, and loads of drinks etc etc but i still want to see my buddies so i have to make adjustments. and you know what? so do they, i'm still important too. and i still give alot to the friendships beyond the partying factor. and doing something different is good for all of us anyway. i know that "going out" is unfathomable for some of you (it was for me a few months ago when i was real sick) i'm on good meds at the mo' - i'm only saying that you can hopefully do the things you like/want with some adjustments. I'm also a big art buff and drag all of my friends off to the latest exhibitions - this is low exertion/noise and gets my out of the house so think about what you're interested in as well. Anyway just know that your life is not over. Think about what you can cope with and don't be ashamed it you can't do it all -it really isn't your fault.
As for making friends, well thats hard to do when you're stuck at home in pain. But you could always take up a new hobbie, yoga or something that helps your TN but gets you out of the house? Don't give up, have goals and think about having a valuable life beyond the pain of TN.
Wishing you all the very best.

Comment by Anna Guarco Cheney on May 26, 2010 at 11:03am

Hey,
I don't have a social life either, and haven't for years... I'm 25 now, and lost all of my friends through my teen years basically... so yes, you're social life sounds like mine. I think you are very lucky to have the friends that will come over and cry with you... even if they are so few, they are true, and that is both priceless and hard to find. My friends all just wanted me to go out, drink, smoke, do whatever they wanted to do... not understanding why I was always "sick again??" - and eventually gave up on me because I couldn't and wouldn't keep up with them, calling me lame and weird and whatnot. So, I never had friends or much family even that would listen to me cry or even talk about TN... they just wanted the old me back, or for me to get over my condition so I could be 'normal'...
My suggestion is to be there for yourself, be ok with where you are personally and socially, hold onto the good people in your life, and keep looking for more good... You don't need just any friend that isn't understanding, compassionate, etc..., so don't settle for less ~
Now I have my husband and step-son, so I'm not so alone anymore, finally :) I still get lonely at times, wishing I had a friend to talk to or hang out with, but know why I stick to what is sweet in my life, and use those opportunities to befriend, comfort, and care for myself ~

Comment by Ally Castellano on May 25, 2010 at 11:16pm

Michaela-
Your social life sounds just like mine! Don't worry..I have lost basically all my friends too. When I was in HS all my friends but 2 ran. Now only one of those is still around. Then I started college and I thought I could "start over." Well, my TN flared up and I have once again lost contact with many of my friends. I almost lost one of my closest..
It just plain stinks! I am only 20, so my life may be a little different than yours, but I know it gets me VERY upset when I can't go to things or can only go for a little because of the pain. I hate being in pain around other people so I chose not to even try. You know your body best, if there is something you really want to do, and think that you might be able to enjoy it some, then go. If it is going to make you more frustrated, then stay home. It is hard because triggers are all over anywhere that there are people!
I will be 21 in a few months and I don't want to be able to have a drink, but I want to have ice cream!!!!! Haha I love it and have not been able to eat it for a while.
You are not alone! We have this to be able to talk some. That can not make up for being able to go out with friends, but it can help.

Comment by Michaela on May 25, 2010 at 11:04pm

I am 23 and have TN for the past 4 years and am just wondering if and how you all maintain a social life.
I am unable to maintain a social life and have lost many friends due to the fact that I cannot leave the house almost always because I am in so much pain. I do have a few extremely close friends who will come over and watch movies with me or hold my hand when I cry in pain, but friends like that are few and far between. I am not going to be able to have a social life until I get much better or until I am cured and until then I am wondering how to either accept the fact that I am only going to have 3 friends or should I try to socialize where-ever and whenever possible in attempts to make friends? How has TN affected your social life? Does your social life sound like mine or am I just like this because I have such an extreme version of TN?