I'm new to this site, and completely new to TN. I was just diagnosed about a week ago, luckily I had not been waiting long for a diagnosis like I've heard with other sufferers having to go from doctor to doctor and being misdiagnosed. I wasn't sure if I should have joined this site, because I feel a little out of place being so new to all of this and being only 22 (as my doctor pointed out generally people my age don't have TN) and also I couldn't tell you what exact type of TN I have, I got my diagnosis from a doctor in urgent care. I would like to go see a Neurologist to see if I can get more information on exactly what type I have and perhaps a cause, if I'm extremely lucky. Sadly I do not have health insurance so right now I have to stick with my GP and just live off of the meds she is willing to give me.
But then this morning I woke up (after having had a wonderful, rare pain free day the day before) to horrendous pain. It was so bad I thought it would kill me, the agony was unbelievable I've never felt anything like this. And no one seems to truly understand what I'm feeling so I finally decided to sign up in the hope that I could find others who could understand. Because while I have support, they cannot understand what I'm going through, completely, and sometimes they think I overreact. That tends to make me feel very lonely. And I find that even after this small amount of time the depression is setting in. I'm going to night school to earn my highschool diploma and now that may be in jeopardy because I'm very close to being over my absent days, once I go over four I'm out. How can I go through this pain and always be there? Sometimes I just can't do it. So now it's even messing with my goals. And I just thought I had a toothache, I never thought it would turn into this. So I just really was looking for support and some people to relate to. Because being alone during something like this is just horrible. So here I am.
I generally do not join forums or support sites because I have social anxiety disorder and this kind of thing can be quite scary for me. Gotta love being socially awkward huh? Haha.
Anyway I've rambled too much so I'm going to end this with. Hello how is everyone doing this evening? (or morning or afternoon depending on where you live) I'm Stacey, and hopefully I can get some support and provide some as well. And hopefully I won't seem too awkward. = )
Don't worry about being awkward on this site. This is a great site to get support and give support. you can vent, ask questions, comment etc. There are many caring and supportive members who know haw you feel. There is many different groups you can join also. The face pain info tab at the top of page will get you to alot of valuable info. Take care
Hi Stacey…U have came to the right place for support!! U will find some awesome people on this site. Check out the group called Diagnosed under 40…I am part of this group…I was diagnosed 5years ago, and I’m 40 now TN is a rollercoaster ride…good days, bad days!! I wish people could somehow understand the pain we feel…they try!! U are blessed to have the support!! U will go through a whole range on emotions…angry, sad, depressed, frustrated, determined to beat it!! 5years later I am more than determined to beat the odds, but, have my moments with the other feelings! Give yourself time, rest as much as you can, be patient with yourself!! TN is a diagnosis none of us signed up for. Welcome to the forum. Keep posting!! Post anything…questions, need support, share a success!! Looking forward to hearing from u!! Hang in there.((HUGS))
You can't worry about the cause - mostly cause unknown. See if you can get a medical excuse for the schooling!
Also check into getting an Rx tube of Lidocaine Cream from your doctor - put it on your face - kinda numbing - much relief for some! It doensn't cost much.
The BEST thing you could have done was come here! See if your local library has/can get the book "Striking Back" by Dr. Ken Casey - it is our "bible" here - fulllll of info on meds/vitamins/foods/surgeries - its really the only book out there like it!
Keep reading/learning/asking and Posting your questions!
There is no member too young for us here, we have had a mother join for her 18 month old daughter. If I upset you by saying you were too young, I apologize. The internet does not allow us the put the nuance into words that speech can. I actually meant "it is so unfair, you are toooooo young to be saddled with TN!!"
Stacy, I have had the same worries about my goals too, maybe you can print off the suggested meds from the FACE PAIN INFO and discuss possible working solutions with your GP?
Please don't be scared of us, I felt awkward when I joined but quickly felt at home, I hope you do soon.
I am yong..ish haha..or i was much younger than you when my TN started..dont feel weird about it..numbers are just numbers. There are many young people on this site in your position who know how you feel and many older who can give you advice on it or are like you, newly diagnosed and also know how you feel. People here are so nice and understanding.
Dont feel awkward that you write too much or ramble..i am also a rambler..and many people here take meds that can mess with your brains ability to spell well etc so also feel awkward about writing stuff so its alll good!
Many loved ones cannot understand even when they try but you know, there is info they can read on this site too, so dont feel shy to give them the link, i gave the site page to my best friend and my mum who are supportive but also dont quite get it always, and they were so glad to see so many people supporting eachother and they read the stories of many..and identified that we have so many similar stories..it helped them be more sensitive to my situation..ok now im rambling..anyway..welcome :)!
where is this site diagnosed under 40 I was 32 when this started I am now 35?
Lisa26 said:
Hi Stacey..U have came to the right place for support!! U will find some awesome people on this site. Check out the group called Diagnosed under 40..I am part of this group..I was diagnosed 5years ago, and I'm 40 now :( TN is a rollercoaster ride..good days, bad days!! I wish people could somehow understand the pain we feel..they try!! U are blessed to have the support!! U will go through a whole range on emotions..angry, sad, depressed, frustrated, determined to beat it!! 5years later I am more than determined to beat the odds, but, have my moments with the other feelings! Give yourself time, rest as much as you can, be patient with yourself!! TN is a diagnosis none of us signed up for. Welcome to the forum. Keep posting!! Post anything..questions, need support, share a success!! Looking forward to hearing from u!! Hang in there.((HUGS))
Welcome to the best thing a person with TN can do...You are always okay to say what you feel and ask questions here. If I can be of assistance, don't hesitate to ask!
Ayre…the diagnosed under 40 group web address is: www.fpa-support.ning.com
sorry I thought that group was here…there is a group on this site for TN patients in their 20’s though!!
Hi Stacey, I am Kim and also new to the site. Not new to tn, unfortunately. I too struggle with major anxety and also feel as if I cannot show my pain to family. I truly hope a MD can properly diagnose and treat you. I am also under 40, was 35 when diagnosed. If I can help in anyway please let me know.
Welcome to the group and I am sorry you have to be here but I hope you find us a helpful, friendly bunch.
With regards to school I would go a letter from your doctor ASAP explaing TN and then speak to your advisor, principal or whoever is the most suitable at your school and see what accommodations they are able to make for you given the extenuating circumstances.
I do hope you are able to get relief from your pain soon.
Hi Stacie. First let me say that I am sorry that you have to be here, but glad you have found us. As a high school teacher, let me tell you that you should go speak to the administrator of your program. Bring the paperwork with you from your diagnosis, along with some basic information about TN. This will help them have some idea of what you are going through. You do need to be in class as much as you can for two reasons. First, because you cannot learn if you are not in class. But also, and just as important now, you need to be around people. The depression will get worse if you just hole up and stay in. If you have one or two people who have some idea of what you are dealing with, they will become your rock. They can be there and encourage you, and on the good days you will do the same for them. Please stay in touch.
Hi, Stacie! I am so sorry that you have to deal with this terrible disease but I am so glad that you joined us. This group has been such a help to me. I don't feel so alone and I have learned a lot from others experiences.
There is no member too young for us here, we have had a mother join for her 18 month old daughter. If I upset you by saying you were too young, I apologize. The internet does not allow us the put the nuance into words that speech can. I actually meant "it is so unfair, you are toooooo young to be saddled with TN!!"
Stacy, I have had the same worries about my goals too, maybe you can print off the suggested meds from the FACE PAIN INFO and discuss possible working solutions with your GP?
Please don't be scared of us, I felt awkward when I joined but quickly felt at home, I hope you do soon.
No, you did not give me the impression that you were saying I was too young to have this at all, I understand what you meant and it was sweet of you to say it. Thank you very much. = )
Thank you so much for all of the great replies and support. And while I would LOVE to reply to each and every one of you, I think I will say thank you in this way. Because lately I haven't been exactly in the best frame of mind. It's rare I can form a coherent sentence anymore. Gotta love the medication haha. But seriously thank you, this has made my anxiety a little less and I feel a lot better about all of this. Luckily for me my meds are doing wonders for my pain I still have the occasional attack but it's not as severe. I'm aware that I've gotten very, very lucky in that respect because I know so many of you still suffer even on your meds. But I will be extremely supportive to everyone who needs it because support I think is one of the most important things with something horrible like this pain we've all been forced to deal with and worry about.
Again thank you to all of you! And anyone else for their future replies to this post. It means a lot. = )
TN is a rollercoaster ride…good days, bad days!! I wish people could somehow understand the pain we feel…they try!! U are blessed to have the support!! U will go through a whole range on emotions…angry, sad, depressed, frustrated, determined to beat it!! 5years later I am more than determined to beat the odds, but, have my moments with the other feelings! Give yourself time, rest as much as you can, be patient with yourself!! TN is a diagnosis none of us signed up for. Welcome to the forum. Keep posting!! Post anything…questions, need support, share a success!! Looking forward to hearing from u!! Hang in there.((HUGS))