Lets educate our front line GP's, the first people you usually go to when TN begins and of course everyone else

6 years of bouncing around from doctor to dentist to doctor to dentist to doctor. being suicidal because no one will help you. being told you are only depressed, knowing full well the pain, fatigue etc.. came first then the depression got worse and worse and worse............ thinking your loosing you're mind. your family believing the doctor, well hes a doctor hes supposed to know what hes talking about. trying to work, telling the doctor the cold hurts your face. " he says put a hat on". telling him it hurts to talk," he says stop talking" doctor sends you to psychiatrist, the psychiatrist sends you back to the doctor. back and forth, back and forth. the psychiatrist says" stop coming i cant help you, you need a doctor to help you with the chronic face pain. thats why your depressed. depression doesnt cause that kind of face pain". round and round we go, spinning out of control. i really would be better off dead. i cant take this, i cant live with this pain, cant you see what this is doing to me? i cant be a good mom, i cant be a good wife, i cant work, im a burden, somebody pleeeeeeeeeeese HELP ME. im not crazy, may be i am, no im not, may be i am. im in so much pain i cant think straight.

then a very faint light, a educated ENT says you have TN in 5 minutes after talking to him. then a neuro apt. this is it. someones going to help me. the light is getting bigger. your so overwhelmed after 6 years, that in the neuros office you cant stop crying while trying to tell your story. surely this is the one, the person who will help me. the diagnoses," your just depressed, if you fix your depression maybe your pain will go away." im dead, im truly dead. how can this be? these doctors are supposed to know, they are supposed to fix me. Lord what have i done wrong? what did i do do deserve this? please tell me, ill change, im sorry, im sorry, im sorry!!!!!!

this is a very short version of some of the events living with undiagnosed TN and i wont even get started on my life with diagnosed TN. the difference being we have a diagnoses. unfortunately it does not mean that any of the health care professionals that i had to go through are any more educated about TN. im hoping that this petition will help raise awareness and that people will become knowledgable about TN so that no one has to go through what i and so many others did before recieving help.

there is a petition somewhere on this forum about national TN awareness day or something coming in october 2013. please sign it and get as many people as you can to sign it. we all have to work together.

thank you

Jacqueline

God Bless you Jacqueline! You are such a strong lady - I agree with the SIGN THE PETITION **ASAP**

My 'hats off to you' and thank you for getting the word out about your story...I am sure others are like yours; I am blessed that mine is different, but we both suffer from this infernal disorder - we both understand each other when no one else can...

Take care of your self - thanks for sharing your ideas and your story!

Cris

Oh my gosh, this so rings a bell. I had a faster diagnosis than you, but still went from dentist to dentist to endodontist to MD, who poo-poo me basically, if I wasn't a nurse and knew to ask for a neurology consult and luckily ended up with the best one in town, I'd still be in pain or worse yet doubting myself and living through hell. kg

I just signed the petition. Unfortunately, there are less than 300 signatures :( It's located at http://www.ipetitions.com/petition/trigeminal-neuralgia-awareness-day/

I'm so sorry you had to suffer so many years to get a diagnosis and a doctor that could help you! I was also diagnosed by an ENT after seeing my dentist multiple times, and him referring me to other dental specialists.

I agree that education is important for all current and future TN sufferers! I'm going to look in the resources section to see if there is a pamphlet to print out, so I can distribute them :)

thanks jessica, only 300 so far, we have to get those numbers up. i dont know how but if thats what it takes to get the ball rolling than im all for it. thank you for your reply.

ps. i love your name. my oldest daughters name is jessica h.

Jessica H. said:

I just signed the petition. Unfortunately, there are less than 300 signatures :( It's located at http://www.ipetitions.com/petition/trigeminal-neuralgia-awareness-day/

I'm so sorry you had to suffer so many years to get a diagnosis and a doctor that could help you! I was also diagnosed by an ENT after seeing my dentist multiple times, and him referring me to other dental specialists.

I agree that education is important for all current and future TN sufferers! I'm going to look in the resources section to see if there is a pamphlet to print out, so I can distribute them :)



kg said:

Oh my gosh, this so rings a bell. I had a faster diagnosis than you, but still went from dentist to dentist to endodontist to MD, who poo-poo me basically, if I wasn't a nurse and knew to ask for a neurology consult and luckily ended up with the best one in town, I'd still be in pain or worse yet doubting myself and living through hell. kg

hi kg, im sure so many of us have very tragic stories and im sure there are a few that didnt make it. they call this the suicide disorder because it litterally makes you loose your mind with the pain, coupled with the fact that some people dont have anyone knowledgeable to recognize it. thankfully i found the strength to keep going. it was my husband and 5 children that kept me from following through with my daily plots of how i was going to end the pain. i just couldnt have done that to them. my children never knew i had these thoughts but my husband did. i would see their faces in my mind and i knew i couldnt devastated their lives by following through. i like the picture of your head. i have the identical one of mine, same side and everything, just brown hair. we could be twins. LOL. when did you get yours done and have you had a good outcome? i hope so. thanks for your reply. Jacqueline

thank you cris, i certainly did not feel strong for a long, long time. i just came across the petition somehow and thought, now this is a petition i want to be in on. so many petitions come about regarding animals and" lets fix this road "etc.. dont get me wrong, i love animals, and i certainly love a smooth road, given that the bumpy ones trigger pain, LOL, but this one i can really relate to. i hope everyone will see it and sign and get their friends and family to sign, that would be a good start. thanks for your reply, Jacqueline



cris said:

God Bless you Jacqueline! You are such a strong lady - I agree with the SIGN THE PETITION **ASAP**

My 'hats off to you' and thank you for getting the word out about your story...I am sure others are like yours; I am blessed that mine is different, but we both suffer from this infernal disorder - we both understand each other when no one else can...

Take care of your self - thanks for sharing your ideas and your story!

Cris