Hi. I’m new to all this, but my husband and I went to a pharmacy tonight in desperation of the pain. I was willing to try absolutely anything regardless of the side affects. And the pharmacist looked at me and said ‘you’re too young to have trigeminal neuralgia’. Am I going to have these comments forever?
I get this a lot. Especially from people at doctors offices or just people I meet out and about. Its just one of those things and Ive learned to ignore it. Even in the hospital when I was diagnosed the nurses and doctors kept saying that I was too young. People have just grown accustomed to certain age groups having certain illnesses and some of us break that mold. In 2011 I had shingles and gout AND got diagnosed with TN. All of these are usually found in people 50 or older. I just happen to be the lucky one who can get it all over with now I guess.
My reaction to the comments are to just smile and move on. It gets easier to ignore and eye rolling helps. :) and just think once we are in the right age bracket the comments will end...hehe!
It took 2 years of actively searching for an answer to my pain to get diagnosed and they said I couldn't possibly have it cause I'm in my 20's. Then they finally said it was atypical
I've gotten this mostly from doctors. It does get tiring and I haven't been dealing with this for very long. I suppose I have a lot more of those sort of comments to look forward to.
When I was 19 my consultant neurologist said how come that you have TN you are very young ! I said what can I do ! . he said but I can't believe & your MRI clear ! how can you accomadate ?, I said I am the one who should be in denial situation not you doctor hhhhhh
I keep getting this too! I'm 28 and the first three doctors I saw kept saying "well, it seems like it could be TN but you are too young so I'm going to diagnose you with something else". I got ear infection, TMJ, something I can't remember the name of but that involves a skin flap in the ear drum....everything BUT TN, because I'm too young.
Argh.
I figure since I was born with a ridiculously rare birth defect, it's open season for any weird illnesses that may come my way. Other than the Mayo Clinic where I was diagnosed as a baby, I have yet to meet a doctor who has any idea what I'm talking about when I mention I was born with acrodermatitis enteropathica.
Less to be learned there: Doctors are not all-knowing gods!
I hear this all the time, especially as I was diagnosed at 20. My doctor says "Well, it just means you're special." Gee, thanks? I'll keep that in mind next time I'm mopey over how I can't get my pain under control and worrying whether I'll ever be able to go off medication long enough to consider having children with the man I married. I guess I'm just special. How comforting.
They said that to me. They only considered TN as what I had cause they ruled out everything else. I have atypical tn cause nothing shows up as touching the nerve on my cts and MRI’s. And I have pain on both sides. So ya, I’m ‘special’ too, most days I’m more inclined to say I’m cursed cause I have fibro, bilateral tn, had tn since I was a kid and am bipolar. It would always be worse. I once had a doctor say to me “oh, well atleast those disorders aren’t going to kill you” I remember thinking you don’t know that tn’s the suicide disease and I’m already mentally ill do you? Lol
Oof, Janet. That sounds so difficult. I feel for you, though. I have atypical, type 1 and 2. Bilateral and random. As an added bonus, I struggle with depression. At least we can reach out to others in the more difficult times. There's something to that.
Ya, I’ll be the first one to admitt this site probably saved my life when I was diagnosed. My pain was to the point I would lay on a bed, crying all day with ear plugs in and sunglasses on, in a darkened room with no tv, radio or books. I was in agony. And better yet, my jackass boyfriend broke up with me because I was diagnosed with it. So I was in a bad place mentally and felt like a freak but because of this site I found others in my city and started a tn group! This site is too important.
I have gotten this most my life.
I had my first kidney stones when I was 15 and the ER doc couldn't diagnose me before my right kidney blew out like an over filled balloon (possibly preventable if he had known what was happening) I remember him saying "it presents like a kidney stone but she is too young..." the Children's hospital doc was really angry when I finally got there after 14 hours of the worst pain of my life.
Now I have ATN at 24. I say my TN2 pain is equally as bad or worse than my 6 average kidney stones, but not as bad as my popped kidney. (in case you were wondering...>.<)
I have heard "you are too young" 3 times since I started hurting 10 months ago, even the doctor who finally suggested TN was skeptical because of my abnormal symptoms and young age. I do what just about everybody does, try to laugh it off, and complain when I am really irritated about it. We should all make not hearing this the goal, because that means we survived to be old enough.
I am glad you found this site and can be here with us. As my problems add up I have gone to doctors mentally wishing for something terminal, because living with the pain of being me feels like too much sometimes. I try to remember the bad days are many, but there are good ones, and good people who love and need me.
I wish you all good luck and low or no pain!