How many people under the age of 30 have TN? In all my research Ive only ever found 1 other person. I believe so many people are misdiagnosed because doctors automatically assume TN is for people over the age of 30. It makes me wonder how many younger people live in pain because of old medical data. I know that if I had been diagnosed sooner it would have saved me having 2 teeth pulled and taking every antibiotic there is for “assumed” dental infections and ear infections and sinus infections and migraines…the list could go on lol.
HI Sarah. i was formally diagnosed at age 40. i do rmemeber in my 30’s having a tingling feeling in my upper lip, nose area. No pain then but I think about that now as a precursor to TN. Welcome to this site. there are lot’s of great people here that understand! Judy
Hi Sarah,
I was only diagnose in September 2008 but three years ago I was having what they thought to be dental problems again only to find out it went to Bells Palsy. I lost all facial paralysis on the left side of my face and it took a long time before going back to normal. I still had problems with tingling in my upper lip and nose area and then TN hit. This is one of my worries is that TN may cause my Bells Palsy to come back and OMG that would be horrible to have both… I am just 40 now. I feel your pain and I am here if you ever want to talk. Clemie
Hi Sarah C,
First, welcome to LTN. It’s great to have you. Second, I think you make a great point on the misdiagnosis of people under 30. How can we fix that or educate people? Third, I wish I was under 30 still. 
Thanks for joining.
Scott
One follow-up Sarah C, what online services have you found during your research? I’d like to learn more, especially the under 30 problem.
thx
Hi folks,
Im another under 30, and it is very difficult as Sarah has said, because people just dont understand, and they get tired of hearing about something that " is only a little head ache" There are a couple of things I want to add in here and I hope they are useful. Firstly with regards online resources, the TNA website ( endthepain.org) and blogs are a very interesting place to find out more, the facial neuralga site also has masses of great info, and the place I have found absolutely indespensible was the braintalk forums, in the TN section, the people couldnt be more helpful and will answer any question you may have.
Scott, With regards the online element for the under 30s there is a huge gap there, and it was something I was going to look at, my hubby and I were planning a " young neuralgian" type site as there are a number of specific issues that are more prevelant for young people. Socialising in the same way as you did before, is something that can affect you at any age, but younger people are often more sociably active, out to the pub ( ah the drinking culture of the young scott!) you stop that, you become reclusive, if you can work, you wont do anything else cause you are too exhausted to do anything else, drinking is out of the question on the meds, so pubbing and clubbing with friends stops, all kinds of gatherings get avoided, you talk less, laugh less, the same things that happens to older people.
Now I am still very medicated, but am at an age that having a family is very important to me, Im going to run some of things Ive had to consider by you, so you look at having children, do you risk trying to concieve while taking the drugs, while the birth deformity rate is so high, a rate that increases with every additional drug therapy you take? Is surgery an option to before you make this leap? Or are you atypical and not viewed as a suitable contender? If you come off the drugs youre then in too much pain to work, so you wont be working or entitled to maternity leave, you are now in so much pain, the last thing you feel is frisky, so actively even thinking about trying is far more difficult. If you concieve, and you end up with extreme attacks, how much damage is the physical distress an attack causes you doing to the child? is it more or less than the anticonvulsants would be?Or do you just stay on the meds and take the risk? If you make it though conception, pregnancy and birth, do you go back on the meds right away? the slow ramping up. Do you spend your first few months with a child readjusting to a drug regime, then you go through it all again if you decide you want another. How do you cope as a medicated parent? These are mostly issues that cause a problem if they physically affect the woman, but there is evidence that cetain anticonvulsants when taken by a male can cause birth defects too. The questions related to this are endless, and looking at epilepsy sites really doesnt offer many more insights.
The research re the anticonvulsants is scary although results vary a lot, whats scarier is that the risks seem to dumbed down on the epilepsy websites,by comparison to what the research actually indicates. But there is nothing specific for young TNers out there and it is a massive problem that is long over due to be resolved.( if there is I haven’t found it yet!)
But I suppose on my first post on the forum I should get down off my soap box, but you all have my pain free wishes winging my way towards you.
Love Gracie.x x x
Hi all,
I was 30 when I was finally diagnosed. I’m now 35. But I’d had the symptoms for years prior to getting diagnosed. Before diagnosis, I had ended up with about 5 teeth pulled, CT scans, dx’s of Hemifascial spasms and Cluster headaches, bizarre types of Migraine and at times even thought I was having a stroke. A neurologic condition was never ever a mentioned possibility, likely due to a younger age - but we all know TN isn’t an age relevant condition - toddlers suffer from this. I believe there may be so many others out there in the younger Neuralgian age group that are also mis-diagnosed. Most medical websites that are relative to TN state that you would generally be at least 50 before you can get this beeping disorder.
I’m in Australia and have ordered 20 copies of the information brochure from the TNA website to distribute at local doctors & dentist offices, if they’ll allow me to and also hope to be able to publish an article on TN in some local newspapers. I’m hoping to help spread the word as best I can - maybe we can search for some celebrities that also suffer this unfortunate disorder and get their help in gaining the attention for TN that is needs.
Gracie, we know each other from Braintalk and I am in the same position - I would love to start a family, however I’m single just now and even dating to find a husband is a hard place to start - as you say, the social life is gone, we can’t drink and go to clubs and pubs - my TN support group, well lets just say I’m the youngest there, and the youngest male there is nearly twice my age… I know what you’re going through there. I worry that by the time I even find myself a husband - I’ll be too old to have children, let alone the other problems we have with even trying to have kids…
I hope I’m making sense, I’ve hardly slept again in 2 days because of this blasted TN… 
Cheers ~ Kerry xx
Hi Sarah,
Our daughter just got diagnosed a month ago with TN. She is 16 years old. She is on Lyrica at the moment, but still has severe pain and chronic pain all the time. The medicine makes her loopy and for the pain she is taking vicodin, which makes her sleepy. We have another appointment with her neurologist on May 8th to see what to do next. We try and keep her spirits up and being positive, but at 16 she is just trying to get through highschool. -Cindy