So I'm 22 and I might have trigeminal neuralgia

[lisarandolph]

Back in November of 2007, I was under the most stress of my entire life (about a month from graduating college, the company I worked for shut down right underneath me, I just broke up with my boyfriend of 2 years, etc...). Right before a trip I was scheduled to take at the beginning of November 2007, I realized that the right ear was hurting with intense, short pains that actually shot from around my temple down to my jaw. I went to the doctor who quickly diagnosed it with shingles, gave me medicine, and moved on. The pain got very out of control while on my trip, to the point where my
face & head were jerking when the "pain attack" occurred.

Now it's March 2008 and the pain is back. It's less frequent than it was during my trip, but it's still rather intense. I decided to go back to my doctor today to make sure it was shingles and not something else, so then he said he thought I might have trigeminal neuralgia.

I've been doing research about it all afternoon and am rather discouraged at what I'm finding. Terms like the "suicide disorder" due to the intensity of the disorder make me feel very unnerved and afraid of what may be with me for the rest of my life. I'm not wanting to be on medication for the rest of my life, but I also know that if I want to keep the attacks under control, I must take these meds.

I also feel rather hopeless because I'm only 22-years-old and consider myself rather healthy, and now I'm being diagnosed with a rather horrible disorder that I'd never heard of until about 3:30 this afternoon. I'm scheduled to see a neurologist to make certain that it's nothing else. I definitely hope things turn around and aren't set in stone like this.

Do you all have any tips on how you dealt with it once you found out? I know it's not the end of the world, or even nearly as dangerous and terrible as other diseases I could have, but I do feel beside myself. I'm just glad I saw this group.

[anna219]

You may want to see an Ear, Nose and Throat Doctor.  I was mis-diagnosed with TN in January.  I was put on Tegretol for the pain and to help relax the nerve.  I had some bad side effects from the medicine, and my ear continued to hurt.  I went to see an ENT doctor, who did several tests on me and I was diagnosed with TMJ instead.  

My ear still hurts on occasion, but I am a bad clencher and I was constantly putting stress on my jaw and jaw muscles.  I am wearing a bite guard at night, and the symptoms I had are now 75% better.  I had some facial pain with the ear ache being my primary condition.  Anyway, good luck to you, I just wanted to share this because I was also pretty depressed when I read about the life people have with TN.

[lisarandolph]

Hey everybody,

Thank you so much for the comments and kind words. I have my appointment this Friday (two days away) with a neurologist. In reading some of these comments, is there anything I should be mindful to say to help make sure that I don't have to go to several different doctors to get a correct diagnosis? Again, it may not be it, but I don't want to see myself spending a year or so talking to different doctors only to hear that it's not that or that they don't know what it is.

Since I started taking this medication, I have been completely and utterly exhausted 100% of the time. I used to be able to sleep 6 hours and function just fine. Now I'm having to sleep anywhere from 9-11 hours a night, and I still fall asleep mid-afternoon (around 3pm). I assume this is directly tied to the medicine I'm taking (the generic Tegretol). Another side-effect is dizziness, which I have definitely noticed an increase of lately.

I just don't feel myself. I'm kind of new to my current job (still in the 90-day probationary period), and I feel them not being very understanding of what I'm going through right now. This medicine is destroying my ability to work and stay awake, and they're getting frustrated. Also, when I get a little pain attack, I don't feel like they understand how it can keep me from feeling like working.

One good thing is that I joined a small bible study group about 6 weeks ago, and I was able to share this news with them last night during prayer request. They're all standing beside me and wish me the best. I think I should talk about this with a better outlook. I think the way I'm talking about it makes it seem like I have cancer, and I definitely do not. :)

It's not going to kill me. That's all I know right now. :)

[Cath278]

Hi. Sorry to hear you have that pain. I have suffered from TN since my early twenties (now in forties) and a big help to me was finding my "triggers".getting over tired was the biggest one as well as stress and cold breeze or wind on my cheek.I never go outside without a scarf and when I get tired i take a rest,never put it off or the pain starts. I only get about two attacks a yr now , no meds, just valiumand painkiller when I get attack. They seem to last about 12 days, getting milder after the 8 day. Try not to be too afraid. Its not always as bad as the books say! Good luck with the tests . cath278

[connieb1962]

Deb,

I live here in Ohio as well - do you mind sharing your doctor info?  I am just outside of Cleveland - about 40 mins. east - I would be interested in seeing someone who actually has experience in this field.  I also get the newsletter from TN of America.  

Thanks,
Connie

[Aussiedeb]

I have had TN for close to 20 years now.  My daughter who turns 15 next week has now also been diagnosed with it.  It was hard seeing her in the same pain I have suffered.  

I have been on Tegretol many times and she is right now.  I can no longer take tegretol due to side effects ( I also overdosed on them 8 years ago).  Now I take Neurontin 3 times a day and if I have an attack, valium relaxes the nerve for me.

It is a horrible disorder and it took me a long time to get the diagnosis. I went to dentists and everything, but in the end I was put in a hospital for week in Australia where they finally diagnosed it.

Luckily here in the Ohio, my local doctor I have is very familiar on TN and knew straight away with my daughter. He also has a collegue who does the surgery, but the surgery is extremely painful and the success rate is not good.  I will not have the surgery, but years of taking the medication caused all my teeth to go bad.  I finally have had them all out, as they were setting off episodes for me.

There is the Trigeminal Association of America which I get a regular newsletter from.  Look them up on google and their site is great.

Good luck and I hope you get it treated properely soon.

From a fellow TN sufferer,

Deb

[connieb1962]

I am sorry to hear about your pain.  I think I can understand though.

I just posted yesterday and have been waiting for a reponse - see my post under TN Diagonsis - you will see my symptoms are very similar - I have had them for 20 years and mostly just try and control not getting the pain to begin with.  I went to two neurologists and got frustrated.  I still do not have a firm diagnosis but much more is known about it now.  

I do not want to explore surgery and am very unsure about medication.  I simply can not put pressure on my left side.  I need to be aware when I am clenching - like when it is cold outside.

Keep me up to date with your results and good luck to you!