We're here for your support.

All Blog Posts (381)

Hereditary

Has any doctor ever suggested that TN is hereditary? I keep thinking it's from either my German or my Irish ancestors. I know for sure that migraines are hereditary, from the Irish side. The doctors say that your structure changes as you get older. I don't know if they meant gaining weight, or what. I know stress is probably a huge factor, along with having TMJ. I've got to cut back on my caffiene intake, but for some reason I feel like it combats the medicine fog.

Continue

Added by Julie on March 9, 2010 at 10:49pm — No Comments

Gabapentin Fog

I've been on the same 1500 mg of Gabapentin since 5/09, but I'm feeling more exhausted in the morning. Especially two hours after I take the medicine, it seems it takes longer for th side effects to wear off. It's as if I'm in a fog. The doctor's office said it's not the Gamma Knife side effects, but perhaps prolonged effects of the medicine. It's so hard to work with this medicine, & I know a lot of people do it everyday. It's just getting old for me. It is a relief though to write this.

Continue

Added by Julie on March 9, 2010 at 6:00pm — 2 Comments

It's now 1 week since my prf treatment in the day surgery centre

Ok, well the procedure itself went great - I went in to have the PRF (pulsed radiofrequency lesioning) a week ago today. It was great - I entered the theatre in full on attack mode - and left it about an hour later in 'no' pain at all :-) some post op pain is normal - they did just have live electrodes inside my skull doing minor burn damage to the gasserion ganglion on my right side of my face. Doc says all going well his admin guy would phone me to book me in to have the left

… Continue

Added by Kerry on March 8, 2010 at 12:58pm — 1 Comment

All is not lost ~

So many things stop me (and many of you!) from being able to see friends and family. Yesterday was a terrific day, pain, zaps and all!

I finally was able to go to a family gathering. It was an aunts birthday party. Absolutely huge! The way her daughter arranged things was so unique I wanted to share..

Each table was for a different era. 1940's 1950''s 1960's and so on. she put the photos of those times and candies - those penny candy we can't get for a penny any more! It was awesome :)

… Continue

Added by Ro ~ on March 8, 2010 at 11:38am — 5 Comments

High blood count?

Hi Guys,just got a phone call from the doctors asking me to make yet another blood test appointment,as my blood count is too high!! Any ideas what this could mean,im on Tegretol & Naproxen.Thanks guys xx apparently both my MCV & RBC's are high !! Continue

Added by Lisa Vanessa Welch on March 8, 2010 at 4:00am — 3 Comments

Progress: "how do you do it?"

I've been asked by many people how I do what I do. Listen and be available to people. To help and give encouragement..

I subscribed to this daily spiritual email. Now don't worry, I'm not pushing anything onto anyone.

You want to know how? this best describes it ~

Have you ever noticed that happy people… Continue

Added by Ro ~ on March 4, 2010 at 2:15pm — 3 Comments

Osteopathic Manipulation

I heard that Osteopathic Manipulation cured someone of their Trigeminal Neuralgia. It was told to me by a nurse at a dermatologist office. This friend had skull adjustments, & found relief.

I'm going to see if first, anyone at an Osteopathic Manipulation office in Orange County has heard of Trigeminal Neuralgia, then take it from there. If not, then I'll try acupuncture. Acupunture didn't work on my ulnar neurapathy, but you never know.

Continue

Added by Julie on March 2, 2010 at 11:20pm — 1 Comment

Reducing Medication

I have been slowly reducing the amount of Trileptal I take as my doctor directed. All is going fairly well. However, there are episodes where I have the sensation of my heart beating (tn side ). It's very pronounced and feels like my jaw and ear and cheek are pounding with each heartbeat. Then it quits for a bit. Thankfully its not too painful......yet. I have a long way to go down on meds still. Has anyone ever had this happen? I am new to this. I am very worried that this is the same pain as b… Continue

Added by Dana on March 1, 2010 at 6:25pm — 11 Comments

Trigeminal Shingles

I had an MVD 9 months ago for trigimenal neuralgia. I haven't felt the nerve pain since I woke up in ICU after surgery. I feel completely back to normal and am very gratefull. Two weeks ago I developed trimeninal shingles. I was told by the doctor it could be extremely painfull. Fortunately, it didn't turn out to be real painfull and I am already getting over it. Has anyone had these shingles that have TN? If so did they seem to come back or was it just one time.

Connie

Continue

Added by Connie on March 1, 2010 at 1:03pm — 4 Comments

Hooray!!!!!!!

Hi Guys,sorry for not thanking you all for your comments on my last blog,the pc's been on the blink,had to get a friend to re-build it(whatever that means!!)

Well its all looking good.I went to the Dr's last Friday,i'd had a seriously bad week,the last straw being unable to brush the right side of my teeth on Monday & Friday,it was so painful i couldnt get near them with my toothbrush.So i made an appointment & was ready to go in "all guns blazing" When i got in Dr Khan asked h

… Continue

Added by Lisa Vanessa Welch on March 1, 2010 at 1:00am — 3 Comments

Rough week

Well, it's been a rough week. Well rough month in truth, but this last week I feel as if I'm splitting my life between my home and the emergency room at the local hospital. Was joking earlier that they should name one of their emergency room beds in my honour.

The attacks are one after the other. They're involving all 3 branches (V1, V2 & V3), with referred pain through my neck, breastbone and chest that has caused me to get severe Allodynia (hypersensitive skin - wel… Continue

Added by Kerry on February 23, 2010 at 5:13pm — 8 Comments

Stress?

My doctor assures me this "thing" cannot be caused by stress.Do you guys agree? kind regards Lisa xxx Continue

Added by Lisa Vanessa Welch on February 23, 2010 at 1:30am — 4 Comments

It Is Still An Imperfect Perfection Because All of My Days Aren't in Yet

February, 12th,2010 marked the one year, anniversary date of my MVD surgery. Interestingly, I went from experiencing no pain and not taking pain medications... to minimal pain.... to a full fledge attack inside of 2 weeks. On February 12th, I woke up at 3;30… Continue

Added by Aleshia on February 21, 2010 at 10:00am — 4 Comments

2nd visit

Hi guys,had my 2nd visit to the doctors on Thursday,i was a little better informed this time,despite being your typical Brit,i did ask a few more questions:)

Firstly he said my blood tests where fine,despite the cells being a bit large(more tests on Wednesday)

I asked him how much he knew about T/N,he said he'd dealt with 7-8 cases before(is that many for your average Doc?)

I asked if there are any tests to give a 100% diagnosis,he told me no,iits a clinical diagnosis.

… Continue

Added by Lisa Vanessa Welch on February 21, 2010 at 5:30am — No Comments

Glad to find support

So I am very new to this but I am thankful for sites like this to seek support. I have read a lot of your blogs and it is a relief to see that someone else can relate to how this feels. I was diagnosed with TN in July of 08. This has changed my life. I used to be such a happy person, you rarely saw me without a smile on my face. Since my diagnosis I have not been the same. I am currently taking Tegretol and it doesn't seem to be working. I can not even count the number of episodes I have a day,… Continue

Added by Lori on February 18, 2010 at 7:39pm — 6 Comments

New Pain

I went to my neurologist today with pain behind my ear that radiated up my head. He says it is my trigeminal nerve. I already have the pain at the beginning of the nerve. Does anyone else get pain at the end of the nerve behind the ear?
Continue

Added by Lena on February 18, 2010 at 4:44pm — 7 Comments

Sarah Woolley - POST SURGERY UPDATE

http://www.livingwithtn.org/profile/SarahWoolley?xg_source=activity

Sarah is doing well after her surgery. Her husband texted me yesterday afternoon. Sorry for the delay.
She is not in facial pain and surgery was successful. She has a large "hole" behind her ear.
Will pass along more info as I get it.
I think she must be relieved to feel better! Good news all around
Continue

Added by Kristi Boyer on February 18, 2010 at 12:35pm — No Comments

UK SUFFERERS

Hi to all sufferers of T/N,would love to hear from anyone in the UK,as i guess the care/info here is probably quite different from that in the states.Being a reletive newbee to all this,im really not sure as to what to expect from my GP,who,to be honest,gave me no info at all,and was quite happy to sighn a prescription on the say-so of my dentist,the only "checks" he did was to look in my eyes/ears & throat,ask me if my vision was blurred at all,with that he sighned the prescription pad t

… Continue

Added by Lisa Vanessa Welch on February 18, 2010 at 4:58am — 2 Comments

new pain

I have recently had hot and cold needle pricks in my face, sometimes I get them in my arm. Has anyone experienced this? My face will also hurt worse when I get busy at work, I read that stress can affect us. I am so glad to have found this site. I have to wear a scarf when I am outside in the wind/cold, people are always asking me "are you that cold" . I just agree with them now because I got sick of answering there ???! Continue

Added by Kristin Forrester on February 17, 2010 at 11:13am — 1 Comment

4 DAYS AFTER MVD

HI EVERYONE,

WELL ITS BEEN 4 DAYS SINCE MY SURGURY AND I AM DOING GREAT. ALMOST NO PAIN. THE PAIN THAT I DID HAVE WAS BECAUSE THEY CUT ME OUT ALL OF MY MEDS RIGHT WHEN I WENT INTO THE HOSPITAL. IT TOOK ME AWHILE TO HAVE THEM START AGAIN. MY ONLY PROBLEM NOW IS PAIN IN MY LEFT ARM, I CALLED THE DOCTORS OFFICE AND THEY SAID IT COULD BE A BLOOD CLOT OR INFECTION. THEY TOLD ME TO GET AN UTLRA SOUND A.S.A.P. I JUST GOT BACK FROM SPENDING 5 HOURS IN THE E.R. THE ULTRA SOUND SHOWED NO BLOT CL

… Continue

Added by Debbie Twis on February 17, 2010 at 12:43am — 4 Comments

< Previous Post

Featured Blog Posts

View All

Latest Blog Posts

Monthly Archives

2010

March (10)
February (21)
January (13)

2009

December (18)
November (29)
October (31)
September (21)
August (23)
July (30)
June (26)
May (20)
April (38)
March (43)
February (61)
January (58)

2008

December (71)
November (31)

Welcome to
Living with Trigeminal Neuralgia

Sign Up
or Sign In

Badge

Loading…

Get Badge

Powered by Bensfriends.org

This community is part of the Ben's Friends network of patient communities.
Learn more at bensfriends.org.

Patient Communities

*Aicardi Syndrome *Adrenoleukodystrophy (ALD)
*Arteriovenous Malformation (AVM)
*Ataxia (International)
*Ataxia (U.S.A.)
*Brain Aneurysms
*Chiari Malformation
*Crohn's Disease
*Fibromyalgia
*Trigeminal Neuralgia (TN)