I'm Sam and I have been diagnosed with TN. I am 26 and I feel very alone. I had never heard of this disease until I received my diagnosis. I have some of the symptoms of MS and have been undergoing testing for the last 18 months. I was relatively symptom free this time until September. I started having pain the weekend of my best friend's wedding. It was quick and went away fast, but it's gotten progressively worse.
I'm asking advice because I am currently working full time and trying to go back to school to complete my Masters's Degree in Counseling. Do you think this is an obtainable goal? I don't want my life to stop because I hurt, but some days I just have to function minimally. I hate this. It sucks.
I can’t offer any advice because I am still trying to figure it out myself. I’ve been suffering for going on almost 9 months and its VERY hard. I am also young 28 years old…we just have to keep our faith and believe that things will get better!! Just letting you know you aren’t alone!
It feels better to know that I'm not alone in this fight. No one really understands the type of pain or anything. I had a coworker tell me I needed to suck it up and keeping teacher. Um, ma'am.. Why don't you try teaching with a red hot poker in your mouth that sometimes bangs on your teeth, UGH.
I'm having a terrible day, today.
Jennifer Muir said:
I can't offer any advice because I am still trying to figure it out myself. I've been suffering for going on almost 9 months and its VERY hard. I am also young 28 years old...we just have to keep our faith and believe that things will get better!! Just letting you know you aren't alone!
Hi Sam. I also had never heard of this condition until it struck me 6 weeks ago. I have had Raynaud's for many years, but it was never associated with a disease. After seeing a neurologist and rheumatologist and having an MRI and MRA and numerous blood tests, I still have not received a diagnosis. However, finally a blood test showed something suspicious and another one was done yesterday to try to specify. I am waiting for the results. So, just keep your hope lit up. The pain is horrible. I don't know how you can keep up with your busy life and cope with it. Luckily, I am 70 and retired. My facial and mouth pain and numbness are bilateral. Sometimes, I find that it helps to lie down and just rest, not do anything else, for half an hour or so. I hope that you get through today.
I'm sorry that you are going through this. I was 29 when I was diagnosed and remember how scary and isolating this can be at the onset. This pain is enough to drive you mad and nobody could possibly understand unless they have it. I'm sorry you are having other symptoms of MS too and hope that you get some answers. I have heard a statistic that only 5% of people with MS also get TN. I have TN only but my mom has both MS and TN.
Have you started medication? I know how impossible it is to work and study with this pain. I am 39 now and work full time and have a seven year old daughter. It is so incredibly exhausting to try to do everything. You need to take care of yourself right now...I know that is easier said then done. Many of us do find effective medication and are able to lead pretty good, productive and happy lives.
I have started medication. The doctor keeps adjusting it because the pain is persistent and isn't responding to what we are doing.
How would you respond to people that ask (every.single.day) how the pain is? It's very frustrating because it seems like they expect the pain to just magically disappear! I had a colleague ask this morning and she just sighed and shook her head when I told her there was no change.
justjane37 said:
Hi Sam,
I'm sorry that you are going through this. I was 29 when I was diagnosed and remember how scary and isolating this can be at the onset. This pain is enough to drive you mad and nobody could possibly understand unless they have it. I'm sorry you are having other symptoms of MS too and hope that you get some answers. I have heard a statistic that only 5% of people with MS also get TN. I have TN only but my mom has both MS and TN.
Have you started medication? I know how impossible it is to work and study with this pain. I am 39 now and work full time and have a seven year old daughter. It is so incredibly exhausting to try to do everything. You need to take care of yourself right now...I know that is easier said then done. Many of us do find effective medication and are able to lead pretty good, productive and happy lives.
There are lots of medications to try so do not give up if the first one doesn't work. Some people need a combination of medications to get rid of all of the pain. There is a list of medication possibilities under the "TN basics" tab at the top but feel free to start a convo about it as well.
I know what you mean by people expecting you to get better. It is very frustrating. Take is a sign of compassion that your colleague even asks--she is thinking about you at least. I tell people that I have a rare and very painful nerve disorder in my face. But most people I do not say anything to...just that I am not feeling well. There are business cards that you can give out that explain TN. I think that is a pretty cool idea and would be easy to make your own.
Unfortunately, having a chronic illness will quickly show you which friends/family are truly there for you. Part of the acceptance for me was letting go of my anger towards the way other people react or don't react to my illness. It can be a very lonely place. But lean on the people that are there for you. And we are here always. Honestly, this website has provided me with more support in dire times then anybody else. Sometimes only the people that experience it can understand it. I am in a very strange way lucky that TN runs in my family (never thought I would say that) so they do understand a lot about it.
I truly hope you find some relief.
Jane
dramallamaduck said:
Hi Jane!
I have started medication. The doctor keeps adjusting it because the pain is persistent and isn't responding to what we are doing.
How would you respond to people that ask (every.single.day) how the pain is? It's very frustrating because it seems like they expect the pain to just magically disappear! I had a colleague ask this morning and she just sighed and shook her head when I told her there was no change.
justjane37 said:
Hi Sam,
I'm sorry that you are going through this. I was 29 when I was diagnosed and remember how scary and isolating this can be at the onset. This pain is enough to drive you mad and nobody could possibly understand unless they have it. I'm sorry you are having other symptoms of MS too and hope that you get some answers. I have heard a statistic that only 5% of people with MS also get TN. I have TN only but my mom has both MS and TN.
Have you started medication? I know how impossible it is to work and study with this pain. I am 39 now and work full time and have a seven year old daughter. It is so incredibly exhausting to try to do everything. You need to take care of yourself right now...I know that is easier said then done. Many of us do find effective medication and are able to lead pretty good, productive and happy lives.
I was ecstatic to find this website. It's so nice to talk to someone that knows exactly how you feel and what kind of pain you're having. the thing I struggle with the most is being so tired all the time. I think it has something to do with the medication I'm on. I'm so tired.
And talking. It hurts SO MUCH to talk. I have a strange speech pattern since I developed TN. I can't open my mouth or move my tongue without terrible burns.
I like the business card idea. I think I may design some. I'll be happy to share with you.
justjane37 said:
Hi again Sam,
There are lots of medications to try so do not give up if the first one doesn't work. Some people need a combination of medications to get rid of all of the pain. There is a list of medication possibilities under the "TN basics" tab at the top but feel free to start a convo about it as well.
I know what you mean by people expecting you to get better. It is very frustrating. Take is a sign of compassion that your colleague even asks--she is thinking about you at least. I tell people that I have a rare and very painful nerve disorder in my face. But most people I do not say anything to...just that I am not feeling well. There are business cards that you can give out that explain TN. I think that is a pretty cool idea and would be easy to make your own.
Unfortunately, having a chronic illness will quickly show you which friends/family are truly there for you. Part of the acceptance for me was letting go of my anger towards the way other people react or don't react to my illness. It can be a very lonely place. But lean on the people that are there for you. And we are here always. Honestly, this website has provided me with more support in dire times then anybody else. Sometimes only the people that experience it can understand it. I am in a very strange way lucky that TN runs in my family (never thought I would say that) so they do understand a lot about it.
I truly hope you find some relief.
Jane
dramallamaduck said:
Hi Jane!
I have started medication. The doctor keeps adjusting it because the pain is persistent and isn't responding to what we are doing.
How would you respond to people that ask (every.single.day) how the pain is? It's very frustrating because it seems like they expect the pain to just magically disappear! I had a colleague ask this morning and she just sighed and shook her head when I told her there was no change.
justjane37 said:
Hi Sam,
I'm sorry that you are going through this. I was 29 when I was diagnosed and remember how scary and isolating this can be at the onset. This pain is enough to drive you mad and nobody could possibly understand unless they have it. I'm sorry you are having other symptoms of MS too and hope that you get some answers. I have heard a statistic that only 5% of people with MS also get TN. I have TN only but my mom has both MS and TN.
Have you started medication? I know how impossible it is to work and study with this pain. I am 39 now and work full time and have a seven year old daughter. It is so incredibly exhausting to try to do everything. You need to take care of yourself right now...I know that is easier said then done. Many of us do find effective medication and are able to lead pretty good, productive and happy lives.
Hi, Sam. I, too, am 26 years young and have been dealing with nonstop, all 3 branches, bilateral pain for an entire year now (it’s still so weird to say that). I’ve always been a relatively happy and blessed person but this horrible pain has broken me over and over. With that being said, I work full time as a therapist and I just absolutely refuse to miss days because of this pain. I’ve worked an entire 8 hour day, dealing with several patients- very physical work, with pain levels as high as 8 or so/10. I know I can only speak for myself and my situation, but I believe that you can accomplish many goals as long as you make the decision to just persevere. I have to believe that for myself because I can’t stand the idea of living an unfulfilled life. Hang onto hope.
Hi Sam,
I know how you’re feeling. I’m 25 and was diagnosed officially at 23. I’m also in college working on my biology/premed degree. I know every situation is different, but my doctors have encouraged me to continue my studies. So far I’ve undergone surgery to get the pain controllable and what I’m left with can be dealt with by taking Meds and hopefully nerve blocks. I hope you can get to that point. I was told something very wise by my neurosurgeon in the ICU after my first operation: this condition doesn’t mean your dreams are done, it just means that you might have to accomplish your goals a little differently than most people. I live by that daily. It’s so true. You can do whatever you want to do! Maybe cut back your class load a bit, and definitely register with disability access. Best of luck!
sorry to hear you are having such a rough day :( I hope I can give you a bit of reassurance with my story and hope that may make your day a tiny bit better. My ATN started when I had just turned 26. I was terrified, lonely, depressed. In one month I had been to see 10 doctors, done MRIs, tried different meds until finally a neurologist (more from ignorance and luck than actually ATN knowledge) gave me the meds that worked for me. 3 years later Im doing better than ever but have had many bumps on the road and still trying to come to terms with how to live with this indefinitely. But Im functioning normally! When my ATN started I was one semester away from graduating from law school. I thought it was all over for me. But when I started feeling better I wanted to finish. My school was so helpful, I spoke with someone in the disability services and after showing drs notes, I was given extra time and extra breaks during my exams as well as the opportunity to take the mid terms I had missed. My friends were so helpful with giving me notes and catching me up. I was able to graduate on time I look back now and still can't believe I did it compared to how much pain I was in but I feel proud. Speak to people in your MA program to see if they have similar services. I know it seems so unfair when you have so many dreams and you feel you have to give them up. Try to get an idea of the course load you would have per week. See if its possible to take a few classes to start with and see how you are doing with those, maybe a slower pace would help, see how they can accommodate you. And never give up hope anything is possible I never thought I would be where I am today so hang in there! feel free to msg anytime!
Hi Sam! I am 27 and have just been diagnosed with TN a month ago. I am awaiting my MRI scan where my doctor will also be looking for signs of MS. As a fellow “youngster” I share the same fears as you. We often go through life in our twenties thinking that we have so much time before we have to think about our health. If this experience has taught me anything it is how precious being young and healthy is. I just wanted to say I understand where you are coming from as well. I’m here any time!
I was diagnosed this year with TN but have been having pain for about 2 years after a concussion/closed head injury. I started out with unilateral pain but it is now bilateral worst pain on the right so bad I can't eat or talk and spikes so bad they literally drop me on my knees. I will give you some advice, something that has kept me going. keep your eyes focused on what you want in life...a goal, don't give up no matter how bad the pain gets and tell yourself you can make it through. Pray. My faith has brought me through so much in the last several years. Always here if you need a friend! oh and BTW, my head injury, came from an out of control psych patient that beat me up who I was trying to help. lol I worked in psych for 11 years.-) Gotta love it!
I have had TN since I was 21. I'm now 26. Your goal is definitely obtainable. I just completed a PhD program and I graduate this weekend.
My TN is autoimmune. I had many strange symptoms since I was a 16, and the cause was finally found 3 years when I was diagnosed with an autoimmune liver disease .
When my TN symptoms first started, an MRI showed inflammation around an area of my brain near the trigeminal nerve. My facial pain gets better on a steroid and immunosuppressant. I also have recurring optic neuritis, so there is concern about MS.
Hi ebkie, I hope you don’t mind me asking but what is the name of the autoimmune that affects your liver? I’m just asking because I am to be tested for autoimmune that affects the liver after positive ANA and AMA.
I have autoimmune hepatitis with PBC overlap suzi said:
Hi ebkie, I hope you don't mind me asking but what is the name of the autoimmune that affects your liver? I'm just asking because I am to be tested for autoimmune that affects the liver after positive ANA and AMA.
You should also be sure you aren't reacting to meds because a lot of the antiseizure meds cause bad liver reactions. A lot of meds I can't take because of this.
suzi said:
Hi ebkie, I hope you don't mind me asking but what is the name of the autoimmune that affects your liver? I'm just asking because I am to be tested for autoimmune that affects the liver after positive ANA and AMA.
PBC is what I am to be tested for I was told. I have had three different lots of antibodies test done in the last 6 months. 2 while I wasn’t taking any medication at all and 1 after an allergic reaction to tegratol. All came back the same.
No idea, appearaantly it was in my file when I got hospital in October that it showed up in my bloods in April and September again. My lover function was good leaving the hospital in middle October. My neurologist said it to me that it was there and I was to meet someone from rheumatology. He came. Made no sense and left again., to tell me that I was to follow up for PBC and have a HIDA scan done. Still waiting for a letter for the follow up. There are many female relations on my mother’s side including my own mother with autoimmune problems, was only a matter of time really before something showed up. I was just curious to know what you had, wondering if there is a connection between TN and everything else I have going on. I suppose it will be a couple of years and many test later before I really know. For now I’m a definite for TN, possible PBC and definite positive ANA and AMA, titre 400 so not two high so far.