Post
Experience Project iOS Android Apps | Download EP for your Mobile Device

I Hate It!

i have had tn for 4 years now since i was 21, its got to the point where i am in constant pain all the time, right at this moment i haven't slept for 4 days. i am getting so down coz i am a single mum and i literally cannot function when i am like this. i hate the fact that a lot of people think i am a hypochondriac coz they cant see it they think its not there and i am making it up. i have been put on just about every tablet known to man and not one even makes a slight dent in this pain.

i am beginning to wonder if surgery on my face was the start of this but it actually started 2 years after surgery so i dont know... i need to speak to other sufferers like me who knows how i am feeling and likewise i am a good listener.

jojo2312 jojo2312 26-30 12 Responses Jun 17, 2009

Your Response

Cancel

this is what tn has done to me,,,,,,,,i want to live,,but i want to die,,i want to smile instead i cry,,every day is lived in dread,so much so, ide be better dead,,i will not suffer sillently,as do the brave,,i cry out to god,and ask him to show me the way,,,there is no reply,and its easy to die,,but i still ask the question ,,,why

tn is an intruder,,who is never welcome..who would robb us of our lifes,whos only goal is to bring us to our knees.in that is has succeeded, i do not think being pumped full of drugs is the right answer,though i am gratefull for them,,and resent them at the same time,,i have not found a way to cope with tn,,as yet.

had tn for 5 years..got it billateral...it plays ping pong with my face ,,,the thing i resent the most though is now i have knowledge of the worlds worst pain,,even when pain free, my mind remember it,,and tn instills fear, where there was none,,,dread,where anticipation once lived,,tn is the thief in the night,it steals our happiness,and leaves behind great sadnnes

Hi. I'm sorry you are down. I can relate to that. What medicines have you tried? I may have finally hit on the right combo for me. I sure hope so.<br />
<br />
I know what you mean about fearing people think it's not real or serious. I am lucky to have a boss with nerve pain and so I feel she can relate and we talk about things that have worked for us. I worry that others won't be so understanding. I feel more sympathy for people with fibromyalgia now and what they must go through, since many don't think it's real.<br />
<br />
I hope you get some relief soon. Please go back to your doctor, or call. 4 days with no sleep is very serious.

new to this site but can relate to all of you. i am 23 years old, young mother of a little boy who is now 5 and last year after being hospitalized and told i had a stroke to the left side of my face. I went to see a neurologist that my mom sees for her multiple sclerosis and he did all the tests and said it was TN. the pain is outrageous sometimes and i still have yet to find out what exactly triggers it. since being diagnosed with TN i have been to my neurologist several times for steroid treatments which help a little bit. they have me on triliptal, klonopin and barbuteral (caffeine tension headache medicine) my neurologist also discovered i needed remeron for restless leg syndrome and that i have a b-12 & iron deficiency. i need constant blood work done and mri's bc he feels this is a start of me having multiple sclerosis like my mother has... im going through a lot of trial and errors with medicines and feel like more and more things keep becoming wrong with me. does anyone have any advice as to what to try when the pain flares up.. im at a loss of ideas right now and am reaching out to those of you fellow sufferers who maybe have more experience or insight to offer me.. thank you all, god bless

Only we know how bad this s*** really is, it will turn your life upside down in a instant. I had went to the 24 hour dentist and he didn't see anything so he put me on penicillian in case i had an abcess u couldn't see, it did not take away any of the pain, so i went to my family dentist and he didn't see anything either, i just busted out into tears, because i was at my wits end with rhe paIN...he referred me to a maxiofacial dentist who diagnosed me with t.n....i was just happy to get a diagnosis, so o knew where to turn...He put me on Elavil and Tefratol...It has worked beautifully so far....I pray for us all, no LIVING THING SHOULD EVER FEEL THIS KIND OF PAIN.....luv you all...We're in this sh** together...Keep ya head up...

Hi JOJO.....<br />
I feel ya..... boy do I ever.<br />
Being in pain constantly, especially this monster-pain, and being a young mom, im with you sister.<br />
Its hard.... more than hard.... some days, i think about giving it up..... but who would be here for our kiddos? They need MOM, even if we arent supermom.... even if we are in so much pain we cant eat or talk or smile with them......<br />
Thats what keeps me going, and helps me get through each millisecond of this beast called TN.....<br />
Im there with ya, there are lots of us out there..... Keep going, girl.

yes, you're right big mom. me too is thinking that way. am just praying we will find the correct medicine to stop this suffering...

I have had TN for some 15 years, but it comes every few years for a few months and then goes away. I recently discovered that I can reduce the pain by exercising or taking a hot tub, which made me think it has to do with heating my body up to an above-normal temperature. Hope it helps someone else.

Hello, It is nice to be able to relate to others what we are all going through in dealing with this disorder. I had shingles in 2007 and I was told that I had TN in Feb. 2010. They think that the shingles cause the nerve damage to the face. The medication for TN cause me to not to be able to sleep. My doctor gave me an anti-depressant to take at bedtime and it has been a blessing. There is no good result comes from lack of sleep. You may want to think about talking to your doctor about your lack of sleep. Good Luck P.S. I did my research on TN and made copies for my whole family. I am dealing with a disorder and it has a name.

i also had shingles.and soon after was diagnosed with TN,ive had this nine years and have recently been suffering with a bloody bad back,sorry for swearing!im waiting to see consultant agaign,im gonna go for the TN op this time,my kids are older now,and ive suffered for too long

HI I AM NEW TO THIS SITE, BUT REALLY KNOW HOW YOU ALL FEEL, I WAS DUE TO GO ON HOLS 3 WEEKS AGO AND WOKE UP ON THE MONDAY MORNING WITH WHAT I THOUGHT WAS A TERRIBLE TOOTHACHE. I GOT INTO MY DENTIST THE SAME DAY, THEY CHECKED MY TEETH, GUMS AND DID AN XRAY AND NOTHING SHOWED. I THEN WENT TO WALES ON THE WEDNESDAY FOR 2 WEEKS BUT AFTER 2 DAYS I HAD TO GO TO THE EMERGENCY DENTIST AT RHYL HOSPITAL, THEY DID THE SAME AS MY DENTIST AND SAID NOTHING WAS WRONG. I STARTED SWIGGING WHISKEY AT THE SIDE OF MY MOUTH AND THEN SPAT IT OUT, IT DID HELP WITH THE PAIN A BIT. I TELEPHONED MY DOCTORS WHILE ON HOLIDAY AND WHEN I CAME BACK AND SAW THEM THEY CONFIRMED THAT I HAD TN, THEY PUT ME ON TABLETS WHICH I COULD ONLY HAVE 1 AT NIGHT, REALLY WASN'T HELPING, I THEN WENT INTO THE WALK IN MEDICAL CENTRE AROUND THE CORNER FROM OUR HOUSE AND THEY SAID THAT I SHOULD HAVE ALSO HAD EXTRA PAIN KILLERS IN THE DAY WHICH THEY PRESCRIBED SOLPADOL, THESE REALLY HELP THE PAIN BUT MAKE YOU FEEL REALLY SICK, BUT I WOULD RATHER FEEL LIKE THAT THAN HAVE THE PAIN. YOU CANNOT DESCRIBE TO ANYONE WHO HAS NOT REALLY HAD TN THE PAIN YOU HAVE TO GO THROUGH. I HAD NEVER SUFFERED WITH IT BEFORE AND I HOPE IT SOON GOES, IT REALLY SPOILT MY HOLIDAY.

"really spoilt my holiday" HA!!!! sorry, but that line made me laugh..... Ill BET it did, hun! thanks for the laugh

Hello, Im new here to ep. I read your story jojo2312. I know exactly how you feel I to suffer from TN also on both sides of my head and face. It all began when I was six yrs old. There is a God!<br />
<br />
I was told that te pain was al in my head also and that I was a hypercondriact too. All my tests were normal except the sedrate level which indicates swelling. I was given a clean bill of health and sent home for the last time. I was crushed and devistated. not knowing what to do I had no internet at the to time to research facial pain either. I continued to DR shop ( sound rediculous doesn't it?). To be called this and have no one believe you, most definately puts us in a terrible situation, I beleive that's why some neuralgians committ suicide. Yes, the pain in it's self is the worst ever. I'd rather give birth over and over again than have this pain.<br />
<br />
Now, years later, not much has changed for mr medically. I still have the same symptoms; some worse whilt others let up a bit. I infrequently visit Doctors now. On occasion I hear a new treatment or drugs that helped others and explore it and even try to see if I can some how benefit from it.<br />
<br />
IM not the same person i used to be either there have been enormous losses-of activities good friends and even family that did not believe me for their lack of understanding. No one can escape the hardships and illnesses of human life. If not haunted by some medical issue to themselves, they know someone dear to them or see suffering somehow.<br />
I have been moved by those who have been supportive, kind and patient with me through this ordeal. They are my heros...this is no easy walk, as the journey was extreemly dark. And although I encountered intensive health care professionals, I've been greatful for the many who did believe me and try their best to help me in a dire situation! :)<br />
<br />
My gains have been monumentousas well. I've learned how life is so unpredictable and imperminant has been a gift indeed. I appreciate the few pain-free moments as I cherish the friends and family who remaind behind me and who were also comitted to helping me along the way.<br />
I have documented this long and dark traveled journey. The culmination of lessons learned as I continue to struggle to live well with these hidden disabilities. We look fine to others, if they only could see our pain, what would they think or do?<br />
<br />
"Sometimes I wish I looked disabled, then mabe people could see how much Im hurting inside ~ from annonomous~<br />
<br />
We defiately have unique challenges when our pain is invisable!

hi littlefawn. I really cried for you to know you had this as young as 6. I had mine when the dentist severed my nerves after toothe extraction. my life became like hell of the pains I was experiencing, some don't believe me, I even consulted faith healers until I found the right doctor, the neurosurgeons who operated me on and cutt the hyperactive nerve. I've been to normal life for 30 years but now just last month, i am experiencing the pain again, and I"m taking up tegretol 200 mg 2x a day. and its fairly effective for me. try to visit a neurologist and ask about this medicine.

I'm sorry I don't have any disease and I'm just 16. But I just wanted to say that I really know how you feel because someone very close to me suffered from a disease and is still recovering. It's really hard when you have such a hectic life already and then your health slows you down. And people really don't know how painful it is since they have no "evidence" to see how much you're really suffering. That makes it worse. How can you explain it to them? They only know what's happening when they really try to understand. And then they'll realize what all you are going through. <br />
I don't know if this would help, but you have my support.