We need each other
 

It seems that a trip to the E.R. is something most of us do at one time or another for T.N. Reaching out for comfort as our fear becomes overwhelming. Someone should be able to stop the pain, after all they are a medical facility. Right? Do you know that most the staff and the Doctor are not even knowledgeable about T.N. When I went to the E.R., I took a
pamphlet with me with some info. and the Doctor made a copy as he sure didn't know what to do or much to say. They gave me a shot of Demerol and I went home and puked..
I played the Dental game of getting a tooth pulled and there is the root canal issue and the "Well, if we pull them all then we'll eliminate that problem.) If you are single and dating, and they want to go to the steak house, well that ain't gonna happen.
I spent nine days on a morphine pump before my MVD and have no memory of it. My husband and daughter said that I talked to people who were not there and piddled around the room like an idiot.
The choice of narcotics was up to my pain management Doctor who, I believe, reached into a hat and pulled out a narcotic for the day. Morphine suckers seemed to be a preference of his. I was put on Oxycontin, then Methadone
which had the worst side effects. Nodding off every little bit and I wasn't aware of it. I would see little ants flying by
in a group. I would just be so obsessed with them.
During a major surgery while on Methadone, apparently I stopped breathing and had to be put on a Vent. Due to the help of my family Doctor, I got off the narcotics. That's not
easy.
For all the trials and tribulations we venture through and all our headaches and heartaches, T.N. can have a devastating effect for all of us. There is a feeling of being lost and can't seem to find our way. We need each other.
Bless, Doodle bug7

That's crazy that you mentioned seeing little ants flying by... I saw that too while I was in the hospital, and it annoyed me so much. Of course, my family couldn't see them, so that made me even more annoyed.

For the little time that I've been a part of this forum, it's helped me cope a lot. I just have to be ok with the fact that I can't do everything I used to be able to do, especially on the medication (which I think my Dr. will probably up the dosage on soon.

The depression of it all is probably the hardest thing to deal with along side the pain. My pain has yet to "disappear", and I don't think that it will. I took those pain-free days for granted before all of this.

Thanks again for everyone's support.

Lauren

There are some days when I have a difficult time coping minute by minute, hour to hour, day by day. The feeling of despair washes over me and the tears roll down my face. Of course, due to T.N., I no longer feel the tears on my left side because it is totally numb. I try so hard to think of all the wonderful things I have, like a husband who drove 8 hours through a snow storm to get me to Mayo clinic emergency.He would do anything for me, comforting me as I screamed out in disbelief, after returning home from Mayo clinic. The first morning when I woke up it felt like half my face was gone. I had to go to the mirror to see.My husband held me close as I screamed out "I can't do this, I can't do this"
Depression is not far away as memories of our plight stay with us. Bless, Doodle bug7

The ignorance to this condition by medical staff is SO aggravating! I had to call the insurance company that handles my private disability (you, the one that comes with your corporate cafeteria plan), and they are in the middle of deciding whether I get their disability payments for the next 30 or so years. So she (a nurse) was leafing through the patients names, and then finally found mine, and she said "Oh yeah.....headaches"
Excuse me lady, headaches are to trigeminal neuralgia what a stubbed toe is to a broken ankle - what a bb gun pellet is to a shotgun, what a dust devil is to a category 5 tornado - PLEASE!
And why the hell do they have a nurse deciding this, not a doctor?!? I get so disheartened sometimes with all of this!
You know, when you go to the ER, and they have to categorize your condition, and often they will put "headache" for lack of a better category - but then the folks at the insurance company read my med records and they see that word "headache", and then they categorize it that way in their minds as well. I had no idea of the hell of being ill before all this happened.
Sorry, I am really suffering today, and I just needed to rant. Thanks for listening. And for new folks, please don't think that your experinece will be the same as mine - I have complicating factors that kinda make my situation worse.
Hugs to you all :hug:
Lily

:mad:wtf :mad:why isnt your records reading Neuralgia>>>more specifically ATN ???
With head aches as one of the condition caused by the Neuralgia ??????
your illness IS NOT HEADACHES!!!!!!!!!!!!!!
take a few deep breaths and let the negative pass / then just try to put your two cents in as to the true dx being neuralgia NOT HEAD ACHES!!!
I sure have doodle and you too lily in my prayers . we are all in this together and yes we need eachother
:grouphug:
peace
BMW


P.S. LILY:hug:...

YA ought to get that creepy clown of yours to go slap some sense into that nurse.

Tina,
Honey - thanks for that laugh - that would be an image that they most certainly wouldn't forget - a 6'4" maniacal clown demanding to set things straight. Hahahahaha!
Doodle and Lauren,
Hugs to you both - this stuff is hard, but we'll make it through, as you said, together. Wish we could all spend a day or two together, to have those nice talks and comraderie and support all together. But this is the next best thing.
Heartfelt thanks to you all.
Lily

If we all got together, we could laugh, cry, hug and eat chocolate!
Doodle bug7

:grouphug:

to the bug with tn
 

YOU ARE SO RIGHT DOODLE BUG, THIS TN IS A LONELY SORT OF ILLNESS I THINK. YOU FEEL LIKE NO ONE REALLY UNDERSTANDS. I HAVE HAD THE MVD SURGERY BUT AM NOT PAIN FREE. THE PAIN IS LESS BUT I AM SCARED IT WILL GET WORSE AGAIN. I RECEIVED VERY LITTLE INFO ON WHAT TO EXPECT DURING THE RECOVERY. I AM AROUND 11 WEEKS POST OP. I AM NOT BACK TO NORM YET. I HAD PAIN ON BOTH SIDES BUT THE RIGHT WAS THE WORST. THEY FOUND A MILDLY COMPRESSSED NERVE AND A BONY FLAP ON THE OTHER SIDE THAT DIDN'T BELONG IN MY BRAIN. FOLLOWING THE SURGERY I HAD HEART PROBLEMS AND HAD TO WEAR A MONITOR AND THEY RAN THE ENZYEMES TEST TO SEE IF I HAD A HEART ATTACK. NO ON SEEMS TO WANT TO TALK ABOUT THAT. I ALSO NOTICED A HOARNESS IN MY VOICE FOLLOWING SURGERY AND 7 WEEKS LATER FOUND THAT THE INTUBATION HAD DAMAGED MY VOCAL CORDS. SO SURGERY IS NOT SOMETHING TO BE ENTERED INTO LIGHTLY. HANG IN THERE AND REMEMBER YOU ARE SPECIAL. WE All ARE. LOOK FOR THE GOOD IN LIFE AND LAUGH DAILY.

Sending positive thoughts to all you TN sufferers...
:grouphug: :grouphug: :grouphug:
~Jaime~