help!
 

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!

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!:grouphug:

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....

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

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.

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

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...

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.

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:hug:

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

no i havent...i didn't know about it.
i guess im waiting to see how this pre surgery stuff goes.
ill bring it up though with the next dr i see.

I'm a new user. Trigeminal Neuropathic pain X 4 yrs. I'm sending you a web link. The latest info straight from doctors who know and understand our REAL medical diagnosis. Click here: http://www.texastna.org/NC_Review_fo...ort_Groups.pdf
You probably know more than all your doctors - most important: BE SURE YOU ASK THEM WHAT THEY WILL DO FOR YOU IF THE PROCEDURE FAILS.
Also, appoint somebody RIGHT NOW to be an advocate for you. please listen to me - I've made so many mistakes over the past 4 years. I know it sounds like I'm preaching, but I believe you, I believe your pain. Keep a daily journal, esp. meds and pain level. I'll check on you later. God bless. Janet

Hi Janet and welcome! Thanks for the tips and it's great to see a new face here.

I hope everyone here knows they're not alone. :)

My TN has been acting up in a bizarre way, I normally have these unholy spasms and electric-shock type of pains on my right side. But now, it's actually gotten to where it hurts to touch the right side of my forehead. It kind of makes my nightly relaxing girl time a PITA (pain in the ***). I like to end my day with this self heating face mask, ohhh, it feels so nice. But now, I shock the crap out of myself when I apply it because I have to touch that side of my face.

To heck with that vile nerve, I tell ya!

My heart goes out to you. I had trigeminal neuralgia for 5 years before I opted for a MVD. I inew at the time I was atypical (because I had constant burning pain with intermittent electric shocks), no meds worked for me. I was extremely depressed. So long as you have no other significant health probs (autoimmune, clotting) your surgery will be a success. Mine was not because it turned out I had a clotting disorder sending clots to the jaw bone and the bone cells pressed on the nerve causing pain. nancydstephens@yahoo.com. e-mail me if you feel you need details.

I've lived with TN for 23 years now. I first had "episodes" when I was 20 and literally thought I was going to die. I was a young woman with a young child and no one knew what was wrong with me. It was horrible.

I've been offered the surgery, but I've put it off. I'm scared of the potential complications and meds do help me work through my days pretty well.

The source of my initial TN was a large cyst in my right maxiallary sinus cavity...pressing on the trigeminal (and other) nerves. I was pain free for almost 4 years, but the pain returned after the reconstructive sinus surgery which removed "the largest cyst" the doctor had ever seen. I had subsequent surgeries, but the pain never went away. It took 16 yrs. to be dx'ed with TN. Doctors just wanted to continue surgeries, pull teeth, think it was in my head because they were clueless, etc.

It was explained by my neuro that the initial cyst created TN. The surgery helped, but then scar tissue grew creating again TN...but to a lesser degree thankfully! The TN I have now is not as bad as it was with the cyst, but is increasing the last few years.

Just as a precaution, I would like to suggest that everyone have CT's of the sinus on the side of the TN to rule out cysts, masses, scar tissue there that might be pressing on the nerve...well, if the cause is not already known. Of course, my sinuses to this day affect my TN, but the cyst was what started this for me. I was pain free for about 4 years...and still the pain is not what it was then and is managed pretty well with milder meds. Prior to the surgery, nothing helped. Looking back, the surgery (to remove the cyst) probably saved my life, even though four years after the surgery I began dealing with a milder form of TN due to the massive work done to remove the cyst.

I wish everyone so well. It's so much to even try to manage at times. :(

Peace & love,

KD

If I do this wrong, I'm sorry - first time responding to a thread here, and it looks a bit odd :wink: I just found this site and read your post and went, "There it is! Someone like me!" My husband is a full-time student and works thirty hours per week, and we have three kids - he ain't the one holding the homestead together, you know? But lately, well, he's having to try. I'm exhausted. I'm angry at all I feel has been taken from me so suddenly - and I'm overwhelmed by anything that isn't just getting through the pain. I'm taking Tegretol and Neurontin and I haven't had a pain-free day in over a month - 38 days, to be precise. I can't wrestle with my kiddos or go ride a sled with them, I can't eat and I don't WANT to drink but my guy insists. I feel robbed, I feel angry, and I feel too overwhelmed to do anything about it. And right now, I feel lightening on the left side of my face that makes me want to scream. Who decided we should have this, and what the HECK did we do to make them mad?!