Hi, I’m a 17 year old girl who was diagnosed a year ago. I am now on carbamazepine 3 times a day and still struggling to cope with the pain, for example I had the most painful electric shocks in my temple down to my jaw despite taking all my medication. I am struggling in school and I feel my a levels have been greatly affected by my condition. Is there any advice for dealing with TN when you are in social situations? I do not want to stay in my house 24/7 because of the pain.
Hi Tayah. Unfortunately it takes a while for you to find the right dose/type of medication to get the pain under control. Have you seen a neurologist yet? The is a group here for TN sufferers in their 20s but I'm sure you could join them and discuss the sort of problems you are having. Go to forums at top of page - groups, to find them. Hope things settle down soon.
Hi I am 24 and I am a TN2 sufferer, so I have a slightly different experience but let me share a story you might relate to.
It was about 6 months into having ATN and I had only known what it was for 2 months, I was on Lyrica, my second attempted drug, and I would find out in 2 weeks that it was sending me into a terrible depression. I had not been to any kind of social event for weeks, but my church friends were having an annual get together that I had always enjoyed in the past, so I got myself there. It happened to be one of the worst days for breakthrough pain that I ever had on Lyrica, but i went out anyway because a few friends were expecting me, and I needed to get out of the house. It was a dinner thing, so I got a single piece of bread (the only thing that i figured would not make me worse) and I sat down near my friends. A perky college student I didn't know well asked me how i was and said "We've missed you lately!" I tried to choke out the standard "I'm fine." but I couldn't. I just sat there looking startled and then tears started running down my face. At this point the whole table of 8 was staring at me. I stuttered, "Things have been hard," as I started to sob. I felt so embarrassed and the poor girl who asked looked like she really regretted it. I eventually stopped crying, until the next person came up and asked me how I was, THEN I STARTED CRYING AGAIN! I ended up crying every-time a new person asked me how I was, like 7 times. the people I was with started trying to cut them off before they could ask "how are you?" It is something I joke about now, but it was not a fun night. :D But I got through, and I think that was the first time anyone outside my close friends group figured out how bad I really was.
As far as social advice goes, I try to find the balance between letting someone know how bad i am feeling and not scaring them or overwhelming them. If you have people you trust, let them know you are having an extra bad day. If someone invites you for an activity you can't do, politely decline, saying you are in too much pain (it is important to let them know why so they don't assume something bad), but ask them to come watch movie, or something low key at a later time.
Also, Educating the people around you helps, 95% of people I talk to have never heard of this. So i let them know, and then they are more understanding. I like to use these links. https://www.youtube.com/watch?v=uzx_m-a2BJw&feature=share and http://www.pixton.com/comic/b1i49swv
I used the comic on everyone, and the video on idiots who think I am faking. :)
For my own personal sanity I also watched all the Ted Talks on pain and depression. You might enjoy those too.
I have had to make the decision to quit my job and move in with my parents, it is my first ever "Real Adult Job" and I love it, and I want to stay so bad, but this pain has taken such a toll on my life I just can't work with it anymore. I am not saying that you should quit school, but you might look into online classes, My high school let a guy with health issues do 2 classes a day, and the rest online. It might be time to look at options if you think you need them.
I hope this all helps, I am still trying to figure this whole mess out. Make jokes where you can. My jokes have gotten very dark, but they still help people relax around me while I rock in pain and pant. I also have kidney stones, so I joke "I have done 2 of the most painful things a person can feel, any one want to break my femur, make it 3 for 3?" Messed up but good for a laugh.
Good luck! Things will get better! You are very strong, we all are, this pain makes us stronger than anyone else can see.
I send my love and wish for good days!
I really relate to your story, people around me don't seem to grasp how serious the pain i'm in really is and I feel about down a lot of the time when i'm not contributing loads to my friend based outings. I will have to show them that video or explain clearly to them what it is. It is really difficult when all my friends are out going to parties and I'm sitting at home thinking 'why me?'. You seem to have a really positive outlook on it all and i'm grateful that you replied because I had a really negative outlook. I do actually have a part time job but as they know I have another chronic pain related condition (an AVM, a benign tumor with causes me pain) I have never faced a problem in the work place. Maybe if you let your employer know that you do have an extremely painful condition they will provide help for you and make your working life a lot easier like my employer did. :)
itwouldntbemakebelieve said:
Hi I am 24 and I am a TN2 sufferer, so I have a slightly different experience but let me share a story you might relate to.
It was about 6 months into having ATN and I had only known what it was for 2 months, I was on Lyrica, my second attempted drug, and I would find out in 2 weeks that it was sending me into a terrible depression. I had not been to any kind of social event for weeks, but my church friends were having an annual get together that I had always enjoyed in the past, so I got myself there. It happened to be one of the worst days for breakthrough pain that I ever had on Lyrica, but i went out anyway because a few friends were expecting me, and I needed to get out of the house. It was a dinner thing, so I got a single piece of bread (the only thing that i figured would not make me worse) and I sat down near my friends. A perky college student I didn't know well asked me how i was and said "We've missed you lately!" I tried to choke out the standard "I'm fine." but I couldn't. I just sat there looking startled and then tears started running down my face. At this point the whole table of 8 was staring at me. I stuttered, "Things have been hard," as I started to sob. I felt so embarrassed and the poor girl who asked looked like she really regretted it. I eventually stopped crying, until the next person came up and asked me how I was, THEN I STARTED CRYING AGAIN! I ended up crying every-time a new person asked me how I was, like 7 times. the people I was with started trying to cut them off before they could ask "how are you?" It is something I joke about now, but it was not a fun night. :D But I got through, and I think that was the first time anyone outside my close friends group figured out how bad I really was.
As far as social advice goes, I try to find the balance between letting someone know how bad i am feeling and not scaring them or overwhelming them. If you have people you trust, let them know you are having an extra bad day. If someone invites you for an activity you can't do, politely decline, saying you are in too much pain (it is important to let them know why so they don't assume something bad), but ask them to come watch movie, or something low key at a later time.
Also, Educating the people around you helps, 95% of people I talk to have never heard of this. So i let them know, and then they are more understanding. I like to use these links. https://www.youtube.com/watch?v=uzx_m-a2BJw&feature=share and http://www.pixton.com/comic/b1i49swv
I used the comic on everyone, and the video on idiots who think I am faking. :)
For my own personal sanity I also watched all the Ted Talks on pain and depression. You might enjoy those too.
I have had to make the decision to quit my job and move in with my parents, it is my first ever "Real Adult Job" and I love it, and I want to stay so bad, but this pain has taken such a toll on my life I just can't work with it anymore. I am not saying that you should quit school, but you might look into online classes, My high school let a guy with health issues do 2 classes a day, and the rest online. It might be time to look at options if you think you need them.
I hope this all helps, I am still trying to figure this whole mess out. Make jokes where you can. My jokes have gotten very dark, but they still help people relax around me while I rock in pain and pant. I also have kidney stones, so I joke "I have done 2 of the most painful things a person can feel, any one want to break my femur, make it 3 for 3?" Messed up but good for a laugh.
Good luck! Things will get better! You are very strong, we all are, this pain makes us stronger than anyone else can see.
I send my love and wish for good days!
Thanks, I fake it til I make it, with positivity. If you had chatted with me 2 or 4 months ago my out look would have been much sadder. :)
Friends are complicated, and teenagers are not the best at being kind and understanding. I really hope the video and things help them understand. Just last week I went to a game/movie night that my friend threw, and me and my brother (he is living with me to drive me and do chores when I am too sick,) we were the only people to show up, besides her roommate. We were late, and I was only gonna stay for 30 minutes. She was really sad, but the 4 of us had a good time, and even though I had to lay on the couch for an hour waiting for meds to kick in, I stayed for 3ish hours, and it was a good experience. I try to remember that even if I am not the same person I was a year ago, my friends still want to see me even if I am mumbling my comments from the couch, or writing them on note paper, or fall asleep during most movies for at least 10 minutes, sometimes they even rewind the movie for me. :D
My biggest struggle is not feeling like a burden. My mom told me a few months ago, that "you are a burden, but it is a burden I am happy to carry. I would rather "carry" you then know you are laying somewhere hurting and not be around to "carry" you." I hope your friends can be around to "carry" you when you need it.
As far as my job goes, they have given me all the considerations they can, I work at a small museum, with only 2 staff. My poor boss has filled in all she can, but we were already over worked. Also living away from my parents and trying to work all day was stressing me out to exhaustion, and worsening my depression. So I made the decision to leave when I felt like it wasn't fair to the museum that I keep doing less and less work, and I will get better doctors near the big city with my parents then out in the middle of nowhere.
I am super glad your job is being helpful and understanding, I have read a few posts of people with bad work experiences, and I can not imagine how hard that would be.
I am so sorry. You are so young. I'm glad you are able to take the medicine, they haven't worked for me. I, like so many others, stay home most of the time. One thing I do that helps me is putting the salon pas patches on my jaw bone starting in front of my ear. Guess I look funny but it helps. I also got a prescription that's made at a compound pharmacy in California. I live in Tennessee and they ship it to me. Talking, eating, cold, wind. All are a trigger for me. I find myself trying not to open my mouth to wide when talking or talking out of the side of my mouth. This is my first day in the group. I had a real bad experience at the doctor today and came home upset hurting so bad. They lack empathy so often. I do let folks know that it hurts to talk much and they understand. As soon as I get home I put the patches on
Since you have TN1
Find a competent neurologist thru the group here for United Kingdom!
Look on this website
at a thread called success stories!