Living with Trigeminal Neuralgia

Living With and Treating Trigeminal Neuralgia

Living with Trigeminal Neuralgia? Don't suffer alone. We are here for your support.

Members

  • Ro~
  • Jo
  • margaret
  • Sarah Hobbs
  • NanaCat
  • Michaela
  • claire
  • Sue (s1mather)
  • Danni
  • Deb Urschlitz
  • Scott Orn
  • Nightworrier
  • Ben Munoz
  • Becky Dekker
  • Leanne
  • Mary Klingelhofer
  • Joanne
  • Michelle
  • Lena
  • Stephanie Wyllyamz

Where is Chat?

Hello!~
* (Instructions are now in the FAQ's)
*There is a tab on the top bar to use for chat or,
*Clicking on the green/red dot will connect or disconnect you.
*It also has a little flag on the bottom bar if someone wants to talk in pvt.
*Have a great day all!~
Just lil helpful hints to those who aren't as familiar with the chat. (updated evening of 7/3/09) rl

Community Managers

Add as Friend?

The software we use for our community includes an "Add as Friend" feature which can't be disabled. Feel free to use it if you like. In any case, we're all friends here.

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A little bit about TN and us..

Trigeminal neuralgia (TN) or tic doloureux (also known as prosopalgia) is a neuropathic disorder of the trigeminal nerve that causes episodes of intense pain in the eyes, lips, nose, scalp, forehead, and jaw. It is estimated that 1 in 15,000 people suffer from trigeminal neuralgia, although those numbers may be significantly higher due to frequent misdiagnosis. TN usually develops after the age of 50, more commonly in females, although there have been cases with patients being as young as three years of age .

The condition can bring about stabbing, mind-numbing, electric shock-like pain from just a finger's glance of the cheek. For extended information - click here.

*Please keep in mind this is a support group of a wonderful collection of people with TN or a family, friend, coworker etc. Unless a person states otherwise, we are not doctors but do have the same goals. To get well!~ Thank you for being part of our Support Group

Latest Activity

lol...hey holy catwoman, batgirl...the woman has gone wild...!!! :)I hope this find you well. I think you about you often and hold you close in my prayers. I'm still trying to slow it down a bit. I 'm doing better, but life is never slow or dull. ...
3 minutes ago
Joanne left a comment for Ro~
this is me LO,LOL
13 minutes ago
Joanne left a comment for Ro~
have a relaxing weekend!
15 minutes ago
Ro~ added a blog post
15 minutes ago
Joanne left a comment for Ro~
thanks for your email. i was better last week (moderate) today severe DOA, in bed all day, tired, pain, WEATHER COOL BREEZE its a trigger, Hope you feeling good! HUGS your way today and always! xo
19 minutes ago
Ro~ updated their profile
23 minutes ago
Ro~ left a comment for Jo
zo jo frecklette~! My fav's for the day, yeahhhhhh~ LMAO! ~*hugs*~ I hope this upcoming day is peaceful for you! love, Ro~
37 minutes ago
Ro~ left a comment for margaret
heyyyyy margaret,.. lmao!! Omg isn't this funny? Just the other day I thinking that this was a wish of mine hahahah.j/k I hope you're doing well!~ Ro~
47 minutes ago
Heya SSSSSSSSSSSSSSssaaarah!!! I need that ride more now than ever.... when can we schedule eh? I'd like to go zippin around! (bring water guns k?) missin the chats, Ro~
50 minutes ago
Ro~ left a comment for NanaCat
Cattttttttt!! where u b eh? don't u just love the shortcuts of talking? ha! I hope you're doing well and hope to get to chat with you soon! ~*hug*~ Ro~
52 minutes ago
Ro~ left a comment for Michaela
Hi Michaela! I know you have your hands full and all but wanted to say hi! ~ I saw this and thought it was so cute!! Of course you can't call but I got such a kick out of it... I do hope you are taking care of you too :) ~*hug*~ Ro~
54 minutes ago
Ro~ left a comment for claire
56 minutes ago
heya Sue, Stopping in to say hi, thinking of you with hopes you are feeling better. Ro~
58 minutes ago
Ro~ left a comment for Danni
hi Danni!! Just stopping to say hi~ It's been a bit since I've seen you so I'm hoping it's because things are going well and you are off having a blast !! ~ :))
1 hour ago
And!! pls don't worry about talking about your condition, feelings etc ok? That's what we're here for :))
1 hour ago
Heya Deb :) As for me, not complaining.. just saying that sometimes it's a handful. I'm not sure how many actually became disabled from TN alone. Everyone is so different ~ Some were misdiagnosed, some found a comfort zone. Some had surgery and ...
1 hour ago
I really shouldn't be complaining, I just started dealing with this, and many of you have lived it for a while it sounds like. I am so sorry for your frustration day, even though I am a newbie I have learned that getting stressed out is not good t...
1 hour ago
Ro~ left a comment for Scott Orn
Thank you for your help :)
1 hour ago
1 hour ago
Ro~ left a comment for Ben Munoz
1 hour ago

Forum

Becky Dekker

Just Diagnosed but had TN for the last 2 years

I just joined. Started taking gabapentin last night. I put my story in my profile and won't repeat it here. It was so nice to see a website for those of us with TN. Want to say thanks and hope to ...

Tagged: depression, new

Started by Becky Dekker 3 hours ago.

Ro~

Songs to sooth the savage, or create one lol 19 Replies

just a place to post our favorite tunes ~

Started by Ro~. Last reply by Ro~ Jul 7.

Sheila

NEW PAIN MEDICATIONS RELEASED 7 Replies

On 22 June 2009, DEA Drug Enforcement Agency approval was received in the United States for a new pain drug called Tapentadol. The brand name is Nucynta. (noo-SIN-tah) The new pain drug was especi...

Tagged: new treatments, government banning meds, medicine, pain

Started by Sheila. Last reply by Misty Jul 7.

Ro~

AARP - Asking Doctors Tough Questions (suggestions)

Being an engaged member of your own health care team is crucial to your health How to Ask Good Questions At the doctor’s office: Experts suggest that patients go to an appointment with a set of q...

Started by Ro~ Jul 6.

Joanne

EASY TO SWALLOW DRINK! SMOOTHIES!!! 1 Reply

http://www.easytoswallow.co.uk/smoothies.html#virg

Started by Joanne. Last reply by Ro~ Jul 4.

DR Haim-Moshe Adhan

New Novel and Promising Treatment for TN that may help limit medication Side Effects-recent new article reviewing the subject of topical ketamine, which , when combined with the Nanovibronix Surface a 1 Reply

New Novel and Promising Treatment for TN that may help limit medication Side Effects-recent new article reviewing the subject of topical ketamine, which , when combined with the Nanovibronix Surfac...

Started by DR Haim-Moshe Adhan. Last reply by DR Haim-Moshe Adhan Jun 28.

Sarah Hobbs

For all our dads out there 1 Reply

I wanted to take a moment and wish all our fathers a very happy father's day. Best wishes, Sarah

Started by Sarah Hobbs. Last reply by Ro~ Jun 21.

Sarah Hobbs

Why are survivorship issues for TN patients not addressed?? 9 Replies

I have begun to wonder why survivorship issues for TN patients are not addressed by the medical community. I am talking about things like the mental health issues. About the time I decided to go ah...

Started by Sarah Hobbs. Last reply by Sarah Hobbs Jun 21.

Sarah Hobbs

Please keep Tamara Thompson in your thoughts and prayers 5 Replies

I ask that you keep Tamara in your thoughts and prayers as she is going through MVD revision surgery today. Sarah

Started by Sarah Hobbs. Last reply by Ro~ Jun 14.

Aleshia

How is Liz K. doing? 2 Replies

Does anybody have an update on Liz K? I know she had surgery and was going to be offline for a bit, but I haven't seen anything posted from her since the first of May. Thank you . A

Started by Aleshia. Last reply by Sarah Hobbs Jun 14.

Blog Posts

Ro~

Humor!~ gotta love it :))

Posted by Ro~ on July 9, 2009 at 6:21pm

Deb Urschlitz

Thanks for the warm welcome

Posted by Deb Urschlitz on July 9, 2009 at 11:10am — 1 Comment

Stephanie Wyllyamz

Ideas for spreading word about TN

Posted by Stephanie Wyllyamz on July 8, 2009 at 5:15am — 3 Comments

Kerry

FDA Actions on Pain Meds Containing Propoxyphene

Posted by Kerry on July 7, 2009 at 4:13pm

Lena

Summertime Question

Posted by Lena on July 7, 2009 at 5:41am — 4 Comments

Misty

Pain is getting stronger...

Posted by Misty on July 7, 2009 at 1:30am — 1 Comment

Aleshia

IT was getting on my LAST nerve!!!

Posted by Aleshia on July 6, 2009 at 9:30pm — 4 Comments

Stephanie Wyllyamz

No word on insurance appeal

Posted by Stephanie Wyllyamz on July 6, 2009 at 4:56pm — 6 Comments

Lena

Excellent Website

Posted by Lena on July 5, 2009 at 6:08pm

Stephanie Wyllyamz

BAD left sided atypical pain

Posted by Stephanie Wyllyamz on July 2, 2009 at 12:41am — 9 Comments

Kathy Taylor

In and out

Posted by Kathy Taylor on June 30, 2009 at 2:56pm — 3 Comments

Stephanie Wyllyamz

Still swollen from GKRS, still pain

Posted by Stephanie Wyllyamz on June 29, 2009 at 1:13pm — 14 Comments

Stephanie Wyllyamz

Vestibular disorder post-MVD surgery

Posted by Stephanie Wyllyamz on June 27, 2009 at 3:02pm

Kathy Taylor

Barometric pressure

Posted by Kathy Taylor on June 26, 2009 at 10:08pm — 2 Comments

Stephanie Wyllyamz

this site! THANK YOU!!!

Posted by Stephanie Wyllyamz on June 26, 2009 at 5:08pm — 1 Comment

Stephanie Wyllyamz

Had 1st appt with neurologist post-GKRS

Posted by Stephanie Wyllyamz on June 26, 2009 at 2:00am — 1 Comment

Stephanie Wyllyamz

Falling asleep in the middle of things

Posted by Stephanie Wyllyamz on June 25, 2009 at 4:44pm — 8 Comments

Stephanie Wyllyamz

Gamma Knife and drooling

Posted by Stephanie Wyllyamz on June 25, 2009 at 4:39pm — 4 Comments

chad

Hello

Posted by chad on June 23, 2009 at 1:56pm — 4 Comments

TN Medications

Anticonvulsants such as carbamazepine, oxcarbazepine, topiramate, phenytoin, or gabapentin are generally the most effective medications. Generally speaking, opiate-based analgesics offer little relief from TN attacks, but may decrease the pain sensation that is experienced by the patient. Anticonvulsant effects may be potentiated with moderate to high levels of adjuvant therapies such as baclofen and/or clonazepam. Baclofen may also help some patients eat more normally if jaw movement tends to aggravate the symptoms.


If anticonvulsants do not help and surgical options have failed or are ruled out, the pain may be treated long-term with an opioid such as methadone, oxycodone or Duragesic in patch form.

Low doses of some antidepressants are thought to be effective in treating neuropathic pain, but a tremendous amount of controversy exists on this topic, and their use is often limited to treating the depression that is associated with chronic pain, rather than the actual sensation of pain from the trigeminal nerve.
Botox can be injected into the nerve by a physician, and has been found helpful using the "migraine" pattern adapted to the patient's special needs.
Patients may also find relief by having their neurologist implant a neuro-stimulator.

Many patients cannot tolerate medications for years, and an alternative treatment is to take a drug such as gabapentin and place it in an externally applied cream base by a pharmacist who compounds drugs. Also helpful is taking a "drug holiday" when remissions occur and rotating medications if one becomes ineffective.

For extended information - click here.

Reminder: unless a person states otherwise, we are not doctors but do have the same goals. Always consult your doctor about medications.

 
 

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