How long did it take you to get diagnosed with TN? How many doctors did you have to see before actually being at the right place?
- If your like me it took three years to finally be diagnosed and begin some form of a treatment (that didn't work until I gave in to do the brain surgery)... Here's a bit more about my story & the long adventure I went out to figure out what was wrong with me:
In the fall of 2008 is when I first started to feel any kind of pain & that pain was to me "tooth pain." I started taking ibuprofen & putting orajel on my teeth when the pain would come on & ofcourse I thought it was solving my problems. This all continued on for a year until October of 2009 when I had the worst pain I had ever felt. At this time I was a college student and was at my part time job having what was one of the worst attacks I ever felt. The next morning I finally decided to make a dentist appointment at some place I had never been because I was away at college. Needless to say the dentist looked at me like I was crazy and kept telling me nothing was wrong with my teeth.. I had no cavity but could potentially need a root canal because of a teeth dying. He recommended I continue taking ibuprofen and then go see this specialist to have my teeth drilled. After talking to my dad he thought that was a little extreme since my pain had stopped & thankfully I listened to his advice and did not go to this specialist.
December of 2009 rolled around & the pain was still there. It was a come and go kind of pain and something I had learned to live with. Most people who live with TN would probably think I'm crazy to still have not continued my search for the answer to this but the problem with my TN diagnosis was also that I lived 2 hours away from home during the school year & also six hours away from home in the summer because I worked at a beach then. So as I was home for Christmas break my mom & sister insisted I go see my PCP about this finally & I did. Needless to say it left me empty and even more upset about my pain ... He insisted that my pain was being caused by my sinuses and I needed to be taking Claritin-D & using a nose spray everyday; desperate, I went along and tried this with no results.
March of 2010 I went back to my PCP over my spring break and explained how his last diagnosis obviously was not right. So we went on to the next thing & that was grinding of my teeth. Hundreds of dollars later wasted on mouth guards & moldings of mouth guards that would cause me even more attacks I was still in pain.
From May 2010-August of 2010 I chose to live with my parents back in my hometown for the summer before I returned once again to college. This was my least painful time of my life where I had minimal attacks if any (which I now came to find out was probably a remission session I was in ).
In September of 2010 TN came back with a vengeance & worse then ever. Once again to the PCP I went, but this was not before I had tried to diagnosis myself with what was going on.. I felt around my tooth area to find that my jaw was cracking and slipping so I thought maybe I had TMJ.. The PCP agreed and decided I needed to be seen by an oral surgeon. During this time my PCP put me on an arthritis medicine to help with the inflammation before my appointment which once again had no effect on me. Finally my oral surgeon appointment was coming up and the night before I left school to head home for the appointment my sorority sister who is also a nursing student came running up to me telling me she finally knew what was wrong with me. She explained how she had to find a neurological disorder for her class & came across TN which fit all of my symptoms. I just couldn't believe it & couldn't stop obsessing the whole night over the fact that every description I read described me. The next day I went to my oral surgeon appointment, which I must say was the worst experience and day of my life because of the doctor. We went into the room and he asked me to explain what was going on & I said I do not have TMJ I have TN & he started laughing at me.. I obviously started crying because my pain was so bad that at this point I hadn't slept or ate because of attacks. He does his exam and finally agrees with me & tells me I need to go get a head CT done of my brain to check for MS & a tumor. He tells me I need to get a referral from my PCP for a neurologist and he will help me.
The neurologist appointment was on October 29 or 30 of 2010 and in between these two appointments I was in the ER because of my pain level. Once there I had another asshole doctor try to tell me I did not have TN. Lets just say some doctors are assholes.
... That was my trip to finding out I had TN & it took so long, but why? Because people are so uninformed about this? It is very upsetting to think of all the other people who had to go through this extensive trip to find out what was causing them pain. I wish I knew how to inform these doctors & dentists of this horrible "suicide" disease. ANY IDEAS?!!? No one should have to suffer trying to find out what was wrong with them so lets change that.
For some it's a quick route to diagnosis - for others a long time. Yours was a couple of years, I waited 12 years to get diagnosed.
I wish we knew how to get doctors informed better, most don't accept that younger people can get the disorder, but there are good doctors out there. I was diagnosed by the gp in the town I'd just moved to at the time, that diagnosis happened March 12, 2003. I was 17 when my symptoms started, I was 30 when I was diagnosed - now I'm 37, I've had no surgery - I've maintained my existence on medications mostly.
I've tried many things - but I'm still living with TN as are all of us here - I'm tired and it's after midnight here in Australia, so please don't read into what I've posted, I'm on a new pain medicine and it's warping my thoughts a bit.
Australia is even less aware of the condition and the knowledge of the specialists here with this condition is rarer still. It is sad that considering how many folks like us out there, thousands more that are not members of LWTN that we need to make a stand.
My GP handed me a brochure of a man named Phillip Day who's visiting Australia and doing seminars. Apparently he's a man who owns research companies - and I intend to go to this seminar to enquire about what they know of TN :-) Maybe thats a start.
Getting our condition known to the public, the media our friends and families - the more general awareness thats created in an emotion free forum is what will get attention in our direction. But without that public awareness behind us - the doctors, the researchers can't be as effective as we need them.
I hope this tit bit of information helps and that tomorrow I remember writing it, lol.
Awesome post, I totally know how you feel! For two years I thought I was having some serious sinus issues. I got to the point that when the pain would start I would think to myself "what is the point of going to the dr, it never helps anyway". Then, when I finally looked into TN and I was reading the symptoms on a website I sobbed. They fit to a "T". I am amazed at how many young people are on this website for a condition that is supposedly mostly found in older people.
You hit on it. The reason why this is still nicknamed "The Suicide Disorder", in this day and age, when some TN patients can be successfully treated by several different procedures, and if not, there are maintenance meds which work better than the ones they are given. ATN patients have been successfully treated by several different medications which most physicians are hesitant to prescribe. He-llooo! This is also what is often called, "The World's Worst Pain"!
This is the most exciting topic I have seen presented, thus far, on LWTN. I wonder if anyone has ideas about something along the lines of a petition styled open letter to the Surgeon General, etc., The World Health Organization, etc.? I do not know where to begin with this. These ideas may be grandiose. I don't know. But, I will research an approach. If you and others are on board with me, I think we can "CHANGE THAT", as you mention. I may sound ignorant in wanting to change the face of TN, but seriously, I thought I was a bottom liner, to anyone reading this, Crysta is even more of a "bottom-liner" than I am, obviously.
Hats off! We should all talk. Seriously. I am calling the attention of this post to some of the more senior members of the group.
Thank you for your input. Perhaps, this is exactly what I have always been driving at in the back of my mind.
Also, it sounds as if you have accomplished a lot while enduring a lot. I was misdiagnosed with TMJ in 2003 and it remained that way until '09. I was treated with Diazepam and injections directly to the TMJ joint. I worked sometimes when I felt like pulling my hair out. By '09, it was bilateral and unbearable, so I sought a out a pain clinic, where I currently find some treatment. If my condition had been adequately treated earlier, there is a chance it may never have gone bilateral, according to some literature on the subject. However, although I have been deem
Hmm . . .I got cut off. Although, I have been deemed inoperable, if my pain had been treated earlier, it may not have gone bilateral, according to literature I have read.
To sum things up, I will do some research. Our site is around 1,000 strong, someone correct me if I am wrong. This blog has the cogs in my head turning. I like the attitude of "Let's Change That"!
Best hopes from me to you for finding compassionate care and inspirational hope for each day, living with this.
My TN1 'event' occurred four years ago over the MLK Monday holiday. It took 1o days, from my initial "OMG", to be diagnosed, by a Neurologist, and given Tegretol. On day 5, my Dentist speculated Bells Palsy, and referred me to an Oral Surgeon; who made the same-day appointment with the Neurologist.
Regardless of my results, I have been most fortunate with the quality of care, given to ME, from ALL of my healthcare providers. Believe me, this is a rather lengthy list.
Doctors and Dentists have to do yearly certification, and such; there just isn't enough knowledge, or research money available to 'get the word out'.
I guess that's why we are here:) Good things to Everyone, bob
Bob, this may be a crazy idea. I am no politician. But, a lot of people so not make it with this due to improper care. Sometimes, I wonder if an open letter to perhaps, the surgeon General with many signatures requesting better Pain Management education for people with this disorder who are inoperable would be out of the question. I don’t know if it would do any good. But, the wheels in my head always turn on this. I suffer myself and for the people who are suffering needlessly, when there are pain meds out there which DO work for Neuropathic pain, unlike Neuros seem to think, and ATN patients, especially, who are inoperable, for the most part, cannot gain accesss to them. They are lumped in with TN patients who respond better to surgery. Hmmm . . . . .just thinking. Feel free to throw the tomatoes now. (laughs) I don’t know. I am always wishing that Neurologists, as well as PM docs were more compassionate to pain, and not just trying to find the source of compression, etc. I suppose I am a dreamer. Right?
You keep dreaming Stef. If we don’t have hopes and dreams for something better, then either (1) we have nothing to live for or (2) life is so perfect that we couldn’t possibly want anything more. I think you have great dreams, and those dreams are what will lead you to action. You go girl! I am with you in concept - I just don’t know what the best path is to convert those dreams to actions. I too would like to advance the awareness around TN…both in and out of the medical community. So keep your ideas flowing. Maybe someone who is more saavy in the political arena will come up with a good way to advance your idea. I think it’s a good one!