[awesomeskier5]

im recently diagnosed with trigeminal neuralgia, not quite a month ago. I have been dealing with pain for over a year now consistantly, although it first sprung up about two years ago. im almost positive i will have MVD surgery as soon as possible, and my consult for it is in a couple weeks. ive had surgery before, and i know its the best treatment option for me right now, even though its also the scariest.
the worst of it all is how depressed ive felt lately. its like everytime someone isn't talking to me, or everytime my thoughts are allowed to wander on their own, they drift to everything that i am now having to deal with and i am overwhelmed with emotion.
im tired all the time (which is most likely from trileptal) and i have absolutely zero drive to do anything that involves exerting mental or physical energy.
anyone that has gone through or is going through anything like this please talk to me. my family and friends try to help, but not actually facing what i am facing is making things difficult.
im running so fast out of patience and strength. i really hope talking to everyone here will help. HELP!

[Lindat]

I absolutely understand you! I am on tegretol and lyrica, and while it controls the pain, I have had to increase the dose every two or three months to do so. For now, I refuse to consider surgery, I just can't afford to stop working. I too am tired all of the time, and am getting alot of flack from my jerk of a boss over this. I work in a very fast paced, stressful job, and struggle every day to keep up. One question I have is, are we considered disabled? Can we go on disability? Every day it gets a bit harder to keep going on......hang in there!

[awesomeskier5]

hmmm, it seems that there has to be some kind of pay period if you chose to have surgery. i am still waiting for my consultation on MVD, which is still two weeks away, but ive heard that its only a couple days in the hospital and a week or two until full recovery. if your boss is such a jerk, maybe you should quit, or at least punch his lights out. i haven't told my teachers yet that what im going through, because so far, i haven't let it affect my work, although i have class in two hours and i haven't started my homework yet. so maybe today's the day. i bet we might be considered disabled, i mean, we have a neuro-disorder, and its something that RIGHT NOW is keeping us from living a completely normal life...there has to be someone that will help.
today i wake up after a really good night's sleep, because my boss let me not come in this morning, and i just dread taking trileptal. because i know about 20 minutes after i do: there goes any energy, ability to form thoughts, to see correctly, grrr. i can't stand these pills. get me some brain surgery so i can go back to normal...
ps to all...my brain surgeon is Dr. Haines, up here at the university of minnesota, he used to do a lot with TNA, and i was wondering if any of you had ever heard anything about him....

[Jebbyfur]

I am i n the same place as you are so don't feel alone. I am also on antidepressants so it does help. I adon't know of your doc but maybe someone does. The meds make me incredibally sleepy, so coffee is a must for me. Evntually you will catch up though. Good luck on your consult. I am doing some other things before I do the surgery. I am going to a pain doctor for a diagnostic test to be sure it is the trigeminal nerve. I have to get over my sinus infection and stuff before I can do it. I am going to PM you with some info. I also thought about ssi but it's hard to get I hear.. Jen

[awesomeskier5]

idk what ssi is... hmmm. thanks for all the help though! i definately needed someone else to talk to that has been going through this too.
i have MS workup next week though, im getting more worried about it. i think i might have some sypmtoms but i really don't know. I also don't know what they are going to do to me, HOPEFULLY just ask questions and not do anything crazy like a spinal tap.

[shelly]

hey know how you feel i am 32 and have had this tn from 1999 to date. i am going to have mvd next week on wednesday. are you seeing a pain specialist. or neurologist? i ahve depression as well my meds drag me down down down, tired all the time no physical strength. little anxious about the surg but in the same breath i am looking forward to it

[awesomeskier5]

im not seeing a pain specialist, but i am going to a neurologist neek week to discuss MS, and a neurosurgeon after that for a MVD consultation. i think my meds are starting to level off, as far as side affects go, but i also just feel so much more mentally stable after talking and listening to everyone here and at the braintalk forum. thats really cool that you have your surgery so soon, idk what its been about me that makes me want it NOW NOW NOW. meds are pissing me off, so surgery seems a lot more positive. here's the knife, doctor, cut me open. haha, i know its not really funny, but to quote garden state:
"What do i do? i laugh. im not saying i don't cry, but in between i laugh because i realize how silly it is to take anything too seriously."
if you can't laugh, what is left?
sarah
ps laughter to all...i hope to bring some chuckles to this forum now and then...

[awesomeskier5]

ps...
another tn spasm today....eating chex mix.
apparently the meds aren't working yet.
crying out of frustration.
never felt so lonely...apart from family and all those close to me here at school.
really bummed.

[Jebbyfur]

hang in there, things should get better. If things do get worse call teh doc, and he maybe can adjust the meds to get you over the hump. Get alot of good rest. Eat soft foods not to agrevate right now and try to keep a diary of what your triggers are for the doc. Lots of hugs and wishes for a painfree night's sleep. Jen

[shelly]

don't want to get to personal but have you asked your doc about a pain patch -ie fentanly patch i wear one it's great no weird side effects just pain control for 72 hour. i get sick real quick though if a wait to long to change it, withdraws.shelly