For over a year now I've been living with the strangest feeling that seemed indescribable for the longest time. I saw dentists, general practice doctors, and ear nose and throat specialists. Finally after doing almost every scan you can think of and being told that I was in above excellent physical condition (I'm only 24). I finally found out I have TN. And honestly I couldn't feel better. Just knowing what it is I'm dealing with has made me feel like I'm not going crazy anymore.
I still don't know why I have TN and what is causing it. I should preface this by saying mine is a very mild case. I have a general numbness in my forehead that moves behind my ear and occasionally causes intense discomfort. The really hard thing about my TN is the overall disorientation that sometimes comes with it. It's usually brought on by showering especially if the water is really hot. Living in Chicago , something I use to love to do was take super hot showers and now that's a thing of the past.
All and all I can't wait to hear from others with this illness and hopefully find someone on here that might be around my age to figure out why it's happening in someone else so young.
I have a theory that mine is brought on by an autoimmune disorder. I don't have MS but I did have chickenpox as a child. My TN is always worse shortly after I get sick. I believe I have a very rare form of shingles that only pops up when my immune system is being tested.
Thanks for listening to my story. If you have any advice I'd love to hear back.
Welcome to the site nick! I am a 38yr old female and my symtoms are different than yours but I can relate to the feeling of finally knowing what your dealing with. I went 2yrs before finally finding a doctor that could give me some answers....although there are lots of days that I still question my diagnosis. Some days I think yes this has to be TN but then there are other days when I read articles online that describe TN and it does not sound like what I am going through.....and yes there are loads of days that I feel like I am going crazy because nobody close to me can relate to this odd type of pain......but this site sheds some light on things.....glad your here!
welcome nick ^^ i have atn but its different than yours, i tend to have crush pain stabbing pain and deep aching pain in my upper and lower jaw now spreding to my temple and the side of the bridge of my nose but on occasion i do also get shock like sensations. this is a great community to meet people with all types of tn caused from many things and also many who still dont know the exact reason either. Have a look through the groups section as you may find others who relate to your specific type of tn that can answer more questions or relate further to your specific type of tn ^^ as well as posting here
Hi Nick, Warm welcome to the group!
Although sorry you’re here, I understand how getting a diagnosis at long last is freeing! You do start to think you’re going crazy…
TN can be very difficult to diagnose…
I was 29 when my TN was first diagnosed…I was also having many neurological symptoms that mimicked MS, but all testing showed no MS. (Thankfully)
I am 40 now…I was very lucky in that after 9 months of TN, my TN went into remission for 8 years!
It did come back in 2010 and is still here…
My advice to you is to read as much as you can about TN, keep an open mind though.
Although we all share similarities, our journeys with TN are unique to us.
Joining a forum like this is great for support and learning from each other, but you must remember that the majority that frequent this forum are struggling with TN. That could be a downer for someone newly diagnosed or managing well with their TN.
We are lucky in that we have many members here who live well with their TN and stick around here to offer support, its so great!
So learn as much as you can, find a great doctor and/or Neurologist to help guide you through TN that is knowledgeable and willing to help you find pain control.
Knowledge truly is power, and often you might find that you will know more about TN then your doctors. So advocating for yourself is necessary at times.
We have a search window here ( upper right of your screen) type in “newly diagnosed” there’s a great thread full of advice and tips under that heading.
Hi Nick! I’m 31 now but my symptoms started when I was 20. Like you, I was in excellent shape and health. I had had headaches since I was little, but nothing that stopped me. That all changed that summer of '02. I was misdiagnosed for years. I kept being told it was just migraines. As time went on the pain got worse. I ended up finding out about TN myself from online research and finally got a Neuro to agree with me last summer, 10 YEARS LATER! I had MVD surgery 3 months ago. They found 3 nerves compressed. I feel so much better! I actually feel good. First time I can say that in 10 1/2 years.
So I know how much it sucks to be young and in pain. I’m sorry you’re going through this but I’m glad you got a diagnosis. It’s horrible to not know what’s wrong. I used to think I was going nuts because no one could figure it out. This site has been incredibly helpful to me. We all have different stories, but we all understand.
That is exactly why I think I have it Nick! And mine is always worse after being sick too. My case isn't mild, but I don't think it is as severe as some of the others here. I had chickenpox really bad as a child too. But neuros say that these things don't have anything to do with it. HA! Then how come it happens EVERY time after we have been sick? Anyway welcome to the group and good luck to you!
Wow O__O this is all so insightful and eye opening. I felt like I was searching for so long to find an answer, but in reality it was only a year. It seems many of you went wayyyy longer than that. Props to those fighting this and those who are in it for the long haul. I am incredibly anxious to go see my Neuro tomorrow. I can't wait to start some sort of program. I've already signed up for a Yoga class and am waiting to hear from the doctor to see if there is a good acupuncture person near me.
Thanks everyone for chiming in! I feel like with the support of family friends and a community that understands exactly what's going on I can beat this!
Nick.... I really feel you should read THE book... Striking Back by Dr Ken Casey....you will eventually need to know more because this is progressive and just goes in and out of remission.
I don't mean to be a buzz kill - but your treatment - for the best future out come- should be based on you learning all you can about TN.
90% of us will never know why we have it...many thru whiplash or dental work or genetics--- finally some research is being taken seriously..... we are rare.... 12 in 100,000!
i agree! just getting a name to put to it was so great. It's validating. The day i got a proper diagnosis was one of the happiest i've had in a long time, because it meant i was no longer seen as just some crazy junkie looking for pain meds or attention; i could say exactly what was wrong.
Mistee I swear the day I found out about what was really going on it felt as though my brain started to attack the problem. I always told my parents that it feels like I can feel my brain and the inside of my head. Now with the knowledge I've started to accumulate my mind can start to attack the problem head on...no pun intended lol.
Mistee Humphreys Shelton said:
i agree! just getting a name to put to it was so great. It's validating. The day i got a proper diagnosis was one of the happiest i've had in a long time, because it meant i was no longer seen as just some crazy junkie looking for pain meds or attention; i could say exactly what was wrong.