Trigeminal Neuralgia Support Group

Trigeminal neuralgia, or Tic Douloureux, is a neuropathic disorder of the trigeminal nerve that causes episodes of intense pain in the eyes, lips, nose, scalp, forehead, and jaw. Trigeminal neuralgia is considered by many to be among the most painful of conditions.

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/ Trigeminal Neuralgia Support Group

At a loss.......

pitmum
pitmum
Hi all...I used to post here pretty regularly but life started getting in the way.
So I had a very bad week last week. Spent 5 days in the hell that is a TN flare up. Last friday night I was at the ER begging for help for the pain, all the doctor did was give me Morphine (which made me puke all morning). I finally called my neurologist Monday and he called me in a prescription for PREDNISONE and gave me samples of a new medicine called Aptiom, which I've not started yet, just got them today.
Okay during the bad flare up last week it was my LEFT side that was hurting so bad. Yesterday after starting the Prednisone the pain has leveled off there but my RIGHT SIDE, which is the side it originally presented in in 2010 is RAGINGGG! I am in absolute AGONY right now!

Has anyone else ever had their pain jump around like that or should I be concerned about heart attack? I'm not having heart pains, or chest pains, no shortness of breath or anything, just feels like the comstant, STABBING TN PAIN!
deleted_user
deleted_user
Dear Pitmum,
Yes, I have had it on both sides, but still the original side worse. Did you tell the neurologist? It sounds like a significant change. I have also found that it hurts more when I get upset - yeah, who isn't upset from the pain?
Hunker down, try the new meds, and see what happens. If you are on the east coast, it is going to be a rainy, lousy day anyway and bed may be the best place!
lameese
lameese
Hi Pitmum Im noticing flare ups when the weather is rainy. so pay attention to the weather. The pain has always been on my right side now my left eye gets a dull pain. I pray that God will touch His baby girl Pitmum and wrap His love and kindness around you and everyone fighting TN. don't give up
CarrieDawnS
CarrieDawnS
Hi,
My pain too started on the right side just over 2 years ago. About 5 months ago it started on the left side as well but still more severe on the right. This is called Bilateral Trigeminal Neuralgia, meaning both sides. It is rare, but does happen.. So sorry you are in pain, we all understand what you are going through. I hope the new meds bring some relief.
jady
jady
im sooo sorry you flared again. does your neurologist let you keep neurotin or something in house so you can start on it the minute you flare up? i am on meds 24/7 for ten yrs now. i have atypical form of tn so no remission but few and far between are those horrible flare ups after motor cortex surgery and i stay on maint. meds and watch flare ups and stresslevels etc.. any other treatment available. a lot of classic tn pain patients can get cured with micro vascular decompression surgery are you candidate for this?
hopefully the side effects will subside over a couple of weeks.
blessings to you for pain free days.
BostonTN
BostonTN
Hi Pitmum,
The weather also bothers me and when we have a storm it's really bad. I have it on both sides and my flare up turns bright red and can be on both sides or just one. When I was first diagnosed I was on steroid for a while I hated them. I also received shots in my face then I was finally given the right mix of medications for me. Carbemazepine and baclofen... so far this works but I also have break through during certain situations. You may want to try the shorts next time it's uncontrollable because I would do anything for them in the beginning but it didn't last long the pain would come back sooner and they no longer helped. Hang in there you're not alone and here for you. Sorry you're in a bad spot right now :(
deleted_user
deleted_user
Yes I have had both sides but primarily on the right...Again after 2 yrs I am getting attacks exactly 1 hr. after I fall asleep..I get up and make coffee..Believe it or not the coffee helps..My theory is that it stimulates the blood vessels and pumps more blood to releaves it from touching the nerves not that I want to be drinking coffee at 2:00 a,m and it finally subsides and goes away completely.....This is my savor besides the trileptal I am on and have recently increased to 1050 mg. from 900 mg which I just started taking a few days ago cause of the attacks I am recently; getting.
endweek
endweek
i always thought i was hallucinating when i recognize the other side of my face hurts also but only off and on though. My pain began on the left side and is normally so severe i cannot describe it but lately the right side gives sharp twitches of pains , The worst things about this is there are times food becomes my enemy, there are times I am unable to chew most times because of the constant stabbing pain. sometimes i don't even want water to cross my lips, Also heat is one of my aggressors and i live in the Caribbean where the sun can be very fierce, no its not paradise for me anymore because TN has taken what joys it used to bring. BUT THE SADDEST THING IS MANY PERSONS IN MY ISLAND DO NOT KNOW OF THE CONDITION EVEN HEALTH PRACTITIONERS AND SOMETIMES I FEEL SO ALONE. THANK YOU GUYS FOR THIS SUPPORT GROUP. GOD BLESS
CarrieDawnS
CarrieDawnS
You're not alone! Awe so sorry, I know it can feel like that. There are people journeying through TN all over the world, and I know what you mean, it is helpful to have contact with others who truly do understand. Hang in there, you are brave and courageous, we who suffer with TN become so whether we like it or not ;). Big hug to you!