hi guys, completely new to this website, I've been trying to find young adults or people who have been diagnosed from a young age? I was diagnosed when I was 12-.- After having countless medications and being hospitalized after overdosing due to my depression from having to cope with TN. i'm now waiting on a nerve block? has anyone had this procedure? There is no support where I live, at least nothing that I have been told about or found on the internet..so it's kind of the normal to just get on with your life, I was amazed at how much support is on here! I am always being told "it's the pain, that no-one can see" ..I think this makes it difficult for my family and friends as I don't really think they know how much it affects me.
As i'm still in full time education, I have missed a lot of school..if anyone is in the same situation with work or school please message me, everyday is a battle with my teacher and my parents to go into school.. it would be amazing to know i'm not the only one this happens to! if anyone could reply, that'd be great! thanks
I'm not your age but live in UK fairly near to you (Chippenham, Wiltshire). I don't know where you are going for your nerve block but I have been to Frenchay Hospital in Bristol where I have had one (I was put under general anesthetic (sorry spelling bad, meds messing with my brain) which may not be the same type as you are having). It worked well for a few months. If you can get refered to this hospital, and Mr Patel, Neuro Surgeon, he has been very good with me. Speak to your GP.
With view to explaining things to parents and teachers get them to look on this site. That should do the trick!
I'm sorry this has happened to you at such a young age but there is great support here.
hi clare, i'm not even sure where I'm having the nerve block, I have not yet been given an appointment..all I know is that i'm waiting for one-.- what happened after the few months?:/ did the pain just return? I will, thankyou:) hope you are feeling okay too, with your medications!..they're horrible:(
jess
Clare said:
Hi Jess
I'm not your age but live in UK fairly near to you (Chippenham, Wiltshire). I don't know where you are going for your nerve block but I have been to Frenchay Hospital in Bristol where I have had one (I was put under general anesthetic (sorry spelling bad, meds messing with my brain) which may not be the same type as you are having). It worked well for a few months. If you can get refered to this hospital, and Mr Patel, Neuro Surgeon, he has been very good with me. Speak to your GP.
With view to explaining things to parents and teachers get them to look on this site. That should do the trick!
I'm sorry this has happened to you at such a young age but there is great support here.
Hi Jess . . Just posting here to wish you the best and to tell you that you are not alone. It is a rare disorder that effects people of every age, although more common over 50. Please do use this website as a support for you and a place to ask questions and have them answered. I am 44 but have a 15-year-old daughter and honestly cannot imagine her having this instead of me. As a mother it would be my very worst nightmare. No one young needs this in their life. Please don't let it hold you back in anyway. You are young and have a whole full life ahead of you! You are much stronger than your peers now and you are a survivor. Have your family read posts on here and learn more about TN on the resource page. Ask your doctors too if they know of a support group in your area.
Hi Jess- I agree with Mybell. I have a daughter your age and can’t imagine watching her suffer through this. Read and research as much as you and your parents can. It is hard for family and friends to get it, but it also shows you who your true friends are…the ones that show up on the bad days. We are here for you, you are not alone. I am having surgery next week and if my daughter had this I would consider it for her as well. Praying for you!
thanks for the support! I will get my parents to look at the website and see what they think.. hope you are all managing okay yourself! best wishes for your surgery, I really hope it goes okay!!
mybell said:
Hi Jess . . Just posting here to wish you the best and to tell you that you are not alone. It is a rare disorder that effects people of every age, although more common over 50. Please do use this website as a support for you and a place to ask questions and have them answered. I am 44 but have a 15-year-old daughter and honestly cannot imagine her having this instead of me. As a mother it would be my very worst nightmare. No one young needs this in their life. Please don't let it hold you back in anyway. You are young and have a whole full life ahead of you! You are much stronger than your peers now and you are a survivor. Have your family read posts on here and learn more about TN on the resource page. Ask your doctors too if they know of a support group in your area.
Thanks Jess, when my surgery is all over I’d be happy to answer any questions you or your parents might have. Be sure to read Dr Ken Caseys book “Striking Back!”
I’m about at my wits end with these episodes !! They come and go and I’m about to put a gun to my head to stop the pain !! I’m 50 years old and life was good until a year ago when I went to have some dental work done !! And I developed TN I haven’t found a support group In ny , does any one know of any?? Yours truly suicidal thoughts
Eddie…I wish I could help, you are not alone. Post your comments under the “Forum/ Discussion” tab. It will start a new discussion and more people will see it and possibly be able to help you find support in your area. Also check under the “Doctors” tab maybe its time to see someone that specializes in tn if you haven’t. I think a lot of us feel hopeless at times but we’ve got to keep fighting!!
I’m so sorry to read that you have TN at such a young age. It seems that so few people understand what you are going through and even family. I have had TN since I was 17 and am now 23. I had a nerve block in 2010 and would be glad to share my experience. I am starting graduate school in the fall, so I know how hard it is to be in school and have TN as it seems that every day is such a challenge. If you would ever like to talk, please feel free to message me.
Hi and welcome to the site. I’m not your age but right now I’m struggle with work, and school I’ve had to put on the back burner.
What I do want to tell ya is I know what illness and missing school while in high school. At the end of my freshman year I got sick. Not with tn but I ended up with ulcers. It basically took my entire high school years to get over it. So I know that dance with trying to keep with classes, attending class, and the teachers frustration. At one point my parent the school Princable and I had a meeting as to what to do. I took some courses through a state program for sick kids and tried my best with some on campus. On good days I would do a crap load of school work and bad days no so much of anything. It was difficult to say the lest but I did graduate on time somehow. With some classes I worked with the teachers to do school work over the summer. It was not summer school. They basically let me get the assignments I missed done durning that time. Then in September I would turn in my work and my grade would be done at that time. It just took a lot of communication between me, my par tents and the school. I do remember I had to have documentation that I was so crazy ill.
Anyhow my point is just make sure to communicate with your school, do your best, and I’m sure you will find a way to get your jhigh school education done.
hi beth, that would be just great, I have so many questions. hoping you are managing yourself with grad school, I can't even imagine how difficult that must be as just high school is a nightmare!-.-
thanks, jess
Beth said:
Hi Jess,
I’m so sorry to read that you have TN at such a young age. It seems that so few people understand what you are going through and even family. I have had TN since I was 17 and am now 23. I had a nerve block in 2010 and would be glad to share my experience. I am starting graduate school in the fall, so I know how hard it is to be in school and have TN as it seems that every day is such a challenge. If you would ever like to talk, please feel free to message me.
hi kari, thankyou for the support! school is just a nightmare, waking up in the morning and knowing that you aren't going to be able to cope with the pain and your parents sending you to school thinking it's for the best. I hope you are managing okay.
best wishes
jess
Kari said:
Hi and welcome to the site. I'm not your age but right now I'm struggle with work, and school I've had to put on the back burner.
What I do want to tell ya is I know what illness and missing school while in high school. At the end of my freshman year I got sick. Not with tn but I ended up with ulcers. It basically took my entire high school years to get over it. So I know that dance with trying to keep with classes, attending class, and the teachers frustration. At one point my parent the school Princable and I had a meeting as to what to do. I took some courses through a state program for sick kids and tried my best with some on campus. On good days I would do a crap load of school work and bad days no so much of anything. It was difficult to say the lest but I did graduate on time somehow. With some classes I worked with the teachers to do school work over the summer. It was not summer school. They basically let me get the assignments I missed done durning that time. Then in September I would turn in my work and my grade would be done at that time. It just took a lot of communication between me, my par tents and the school. I do remember I had to have documentation that I was so crazy ill.
Anyhow my point is just make sure to communicate with your school, do your best, and I'm sure you will find a way to get your jhigh school education done.
hi ed, I know what you are going through, and after attempting to commit suicide, I can tell you that I regret it deeply, although I am glad that it made me a stronger person in general, it made me realise how much people cared about me. Like you, I do not have a support group in my area, but you have to keep on fighting! take one day at a time, and be careful. hope you are managing okay, and that you get the support you need, always here to talk.
jess
Eddie said:
I'm about at my wits end with these episodes !! They come and go and I'm about to put a gun to my head to stop the pain !! I'm 50 years old and life was good until a year ago when I went to have some dental work done !! And I developed TN I haven't found a support group In ny , does any one know of any?? Yours truly suicidal thoughts
Oh my darling. Jess I cant imagine my daughters having this. Im waiting on a nerve block too and intend to try a new type of job and just crack on with it. All you can do is keep going but its a devestating illness. This condition has taken over my life an has altered its course in ways in never could have imagined. You are not on your own there are lots of about. Im in South Wales and sending you and your family lots of love. Helen xxx