Trigeminal Neuralgia Member Introductions


#41

Hi I am Stacey I am 36 years old and I have been trying to cope with TN for the past 10 months…I am currently in the middle of my second “episode” and it is the worst thing that has ever happened to me.


#42

Hello. I had had tgn since 91, but it only started off as facial numbness on the left side. This progressed to severe pain in 2000, which went away after a couple of days and Tylenol #3. In 2004 I had another severe attack and was placed on Neurontin. Couple of weeks ago, the pain got really terrible and the Neurontin is not working, even when they increased the dose. I am sitting here at work now waiting to go to my afternoon appointment to see a doctor for this.


#43

I have begun to experience recurrent facial neuralgia in one or both temples. It is a burning pain that I feel if I touch the area. It is also vaguely achey if I am not touching it. These incidents of pain have happened three times now…and they do eventually resolve. My pain is not as severe as what I have read that Trigeminal Neuralgia is…but I want to know if anyone else has similar issues…


#44

Hi All,
I have been diagnosed with Trigeminal Neuralgia. After a year of pain and 4 tooth extractions, I finally saw a neaurologist who dianosed me. I think mine is atypical. It feels like I have a horrible , nawing toothache, that feels like burning inside the tooth. It feel tight, and is always there, well by the end of the day anyway. Sometimes it feels better, but by the end of the day it is nawing, and burning, anyway I still wonder if this is really Trigeminal neuralgia or if I just need my tooth out. The neurologist I’m seeing won’t give me anything that releaves the pain. I tried acupuncture, but it actually made it worse. Then the DR gave mt ultracet. It basically does nothing. He says he doesn’t believe in narcotics. I am on Vicoprofin for a muscle biopsy I just had , and that seems to help my tooth pain. Anyway I’m in pain and confused on what to do so I’m checking this sight out.


#45

My name is Gayle. I am interested because i am having severe pain on right side of head. Have been diagnosed with TN by one neurologist and another diagnosis of TMJD. I would like to know the distinct difference between TN and TMJD. THANK YOU


#46

I have trigeminal neuralgia


#47

My name is Dollyann and my sister has been diagnosed with Trigeminal Neuralgia. She is still having lots of pain. Any help would be appreciated.


#48

I have a-typical facial pain and trigeminal neuralgia.


#49

I first was diagnosed with Trigeminal Neuralgia about 12 years ago and had a month of pain and taking Tegretol. I have not had a recurrence until two months ago when it returned with a new vengence. I have now been on Tegretol - XR for two months to help the problem but would like to know if any new treatments are out there now. What are other people doing to help along with medication to slow the process? grammybet@msn.com


#50

I am an 80 year old widow. I have had this pain in my face for about 12 years. I thought at first it was my teeth but finally my PA said she thought it was shingles, even tho I had no breakouts. About a year ago when I was in my doctor’s office I had an attact. He said it was trigeminal neuralgia and gave me Lyrica, I didn’t have any pain for a year, now it’s back. My doctor is moving and I have to try to find a new one.

I’m really looking to see if there are any alternative’s methods that have helped anyone.
Laverne


#51

I have suffered with this for years and years and have just this past two weeks had a terrible flare up and just found out from my daughter (chiropratic student) what I have. I have fibromyalgia and am very chemical sensitive so I can not take medicines very well. I would like to learn how others are dealing with this


#52

I have trigeminal neuralgia and the more support and resources I can get the better I think I can deal with it.

Tony


#53

Have facial pain


#54

I was diagnosed with TN on Oct. 26, 2006. I’m wanting to learn as much as I can about this condition so that I may lead as full and “normal”…whatever that is…life as possible.


#55

Hello all. I have suffered with TGN since about 1992. It started off as numbness on the left side of my face, with no pain or discomfort. Then in 1999, I had an attack of severe, stabbing, tingling pain on that side. Fortunately, thank God, when I went to the ER, I was treated by a doctor who was familiar with this condition and I did not have to go the long route of trying to find out what was wrong with me. She offered to put me on Percocet, which I did not want, and told me I should see a neurologist. The pain went away, and since I did not have insurance, I never followed up on it. After that I would often have the powerful tingling, electric shock feelings, but it never got really severe until 2004 when it really hit me. I was started on Neurontin, which kept it under control until this past May when it really got bad. The PCP raised my Neurotin and gave me Tegetrol as an “add-along”. That helped for about a week and then the pain got worse than ever before. I could not open my mouth or move my lips and had to force myself to sip water. My Tegretol was increased, and so far I feel okay. I still get “breakthrough” tingles but I am able to function. This is an awful thing and I would not wish it on anyone. People do not realize what a blessing it is and how good it feels to just be able to get up in the morning and take care of yourself, and go about your business without feeling pain.


#56

Fortunately I found out that my TN is related to what I eat.
As long as I don’t eat the wrong kinds of oil my pains stay away.
I also have to avoid aspartame and MSG.
Is there anyone who has a similar experience?


#57

I was diagnosed just 2 weeks ago, but after 1 year of pain. At first everything started with teeth pain, I had extraction, Root canal, than surgery when they cutting root out of tooth, but pain was still there, even when X-rays were negative. Then I started have stiffed muscles, pain in neck, all my face was in pain and was burning, for the last week I’m having tick on my left eye. Also my teeth are so sensitive I can’t even touch them otherwise they hurt so bad. Dentist told me that I have TMJ, he gave me night guard, but pain was still there, than I was told that is stress. I went for therapy, but therapist told me that I’m ok, no depression. I had MRI of brain- negative, MRI of TMJ, shows on left side TMJ, but was very mild and even doctor told me that millions of people have TMJ, and pain what I have not supposed to be like this. After 1 year he refer me to neurologist.
He said that I have TRIGEMINAL NEURALGIA. He gave me TRILEPTAL. First 5 days - 2 times a day 300 mg and then 600mg 2 times a day. I just did read something on internet about this medicine, and I’m scared to start use it because of side effects. I’m working as an babysitter so I have to drive a lot, watch kids. So I’m still suffering.
Another thing is I’m 32 years old, I do not have kids, and I really wish to have them, and If I’ll start to take those medication, I need to stop working on having baby.
Last thing, on my head I’m not 100% sure if I have right diagnose, maybe I’m just trying to lie to myself, I do not know. How doctor can be so sure, there is a lot of different neurological face pains.
He told me that is 2 different types of TN, first if you have some stabbing, very strong pain for short period time and second type/mine/, when pain and burning is all the time.
I really do not know what to do; I know that I can’t live my life like this


#58

Hi Tanica,

Sorry to hear about your problem - especially at your young age and the fact that you would like to have children.
http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/Atoz/ency/neuralgia.jsp
Have a look as says:
Neuralgia is a symptom of an underlying disorder; its diagnosis depends on finding the cause of the condition creating the pain.
BTW, how is your liver function?

Don’t be afraid, don’t give up but keep looking for solutions.


#59

How mone days it takes to make them work? /trilpetal/?


#60

See if you can find this info on their website:
http://www.trileptal.com/index.jsp

Or maybe contact them and ask.