Useful Websites

[David Hosobuchi]

Use this thread for posting other websites relevent to this forum....:)

[beaming66]

resources for t.n. & Other related facial conditions
http://www.tna-support.org/

Resource info:
http://www.rsds.org/4/resources/out_work/out_of_work_2.html

Symptoms ,descriptions and options classic atypical and pre t.n. http://www.umanitoba.ca/cranial_nerves/ccndhome.htm

Research literature info
http://www.ninds.nih.gov/disorders/trigeminal_neuralgia/trigeminal_neuralgia.htm

Has some great information about Atypical Facial pain, and other cranial neuralgias
http://facial-neuralgia.org

Help with prescriptions
http://neuroland.com/pt/med_help/prescription_help.htm

HOPE THIS HELPS -BEAMING66

[JeanC]

Here's Dr. Peter Jannetta's Face Pain website. It has descriptions of various face pains, some of which can be confused with TN and vice-versa.
(Note: a number of typos and misspellings - eg. "myofacial" - it's myofascial and correct in some places - but in general, good descriptions).

http://www.wpahs.org/AGH/neuro/jannetta/Facepain.htm

Also, please read the disclaimer -

http://www.wpahs.org/AGH/neuro/jannetta/#disclaimer

Peter Jannetta is the pioneer of the Microvascular Decompression (MVD) surgical treatment for Trigeminal Neuralgia. His intro page is -

http://www.wpahs.org/AGH/neuro/jannetta/

There are a number of useful links on those pages as well.

And click here for the TNA's Medical Advisory Board (http://tna-support.org/newlook/more_files/mab.htm) Members. Each name is a link to that person's bio, which generally includes a link to their professional website.

[beaming66]

I see the other link for neuro stimulation is not working this should work linking to the same place as past post.

http://www.medtronic.com/neuro/paintherapies/pain_treatment_ladder/neurostimulation/neuro_neurostimulation.html

[JeanC]

The National Pain Foundation has lots of good info in general about pain, including treatments, finding pain docs, coping strategies, support, research, etc. and also has pages on orofacial neuropathic pain including another good description of Trigeminal Neuralgia (about halfway down the page) -

http://www.nationalpainfoundation.org/MyTreatment/articles/Orofacial_Neuropathic.asp

Home page for National Pain Foundation -

http://www.nationalpainfoundation.org/default.asp


Also, the American Pain Foundation can be found at

http://www.painfoundation.org/

with great downloadable pamphlets (including a Pain Action Guide, Pain Care Bill of Rights, and Pain Notebook) at their publications page -

http://www.painfoundation.org/page.asp?file=Publications/Index.htm

[JeanC]

If you're worried about going to the dentist as a TN patient -

1. Read at the following link, starting at "How to Prevent TN Flare-ups after Dental Work" about 2/3 of the way down the page:

Dental Work and TN (http://www.tna-support.org/newlook/conference_files/2nd%20Natl%20Conf/Dental.htm)

2. Then call the TNA Office (number below) and ask them to send you and/or your dentist (if you're comfortable with the dentist you have) a "dental professional packet" with info about treating people with TN. This explains to your dentist what TN is, how to avoid exacerbating your pain or triggering flare-ups, etc. The packet includes a printout of the above info on how to prevent flare-ups.

TNA Office: 1.800.923.3608 or 352.331.7009

If you're not comfortable with the dentist you have, you can ask the TNA if they know of any dentists in your area who have been recommended by others with TN. You can also check out the TNA's Medical Resources page (link below) for dentists in your area who may be familiar with treating TN patients. Be sure to read the disclaimer at the top of the Medical Resources page. These professionals now pay a fee to be listed and, while the TNA checks their credentials to some degree, the fact that they appear on this list should not be taken as a recommendation or endorsement.

Medical Resources (TNA) (http://tna-support.org/newlook/medinfoonline_files/medical_resources.htm)

If there's a support group or telephone support contact in your area, you can check with them or other group members for recommendations of TN-literate dentists. There are lists of support groups and telephone support contacts, Find a TNA Support Group (http://www.tna-support.org/newlook/findgroup.htm), under Support Groups at tna-support.org

[JeanC]

North Central Texas TNA has its own website at (posted with permission) -

www.texastna.org (http://www.texastna.org/)

There's a list of videos, including one of an MVD surgery (the second camera icon down - not for the squeamish or faint-hearted as it's quite graphic), at -

http://www.texastna.org****eos.html

(There's also a slideshow of the 2006 TNA National Conference in Portland - the last two icons in the list.)

Several years of newsletters with a ton of information (these, along with other support groups' newsletters, are also available through tna-support.org (http://tna-support.org/) under "Support Groups" in the main menu) -

http://www.texastna.org/newsletters.html

Other good stuff on the website, too - explore on your own!

[JeanC]

I thought I'd posted this in here, but don't see it. Notes from a presentation at the TNA 6th National Conference in Portland in 2006 on managing TN with meds - over 20 different meds to try, so don't give up after 5 or 6 or even a dozen.

Medical Management (http://brain.hastypastry.net/forums/showthread.php?p=16668#post16668)

Hang in there!

[kjagelle]

I've been looking into the possibility of cavitation problems contributing to TN pain. Has anyone with TN had cavitation surgert and what was it like for you?

thanks.

[kjagelle]

oops! sorry i mispelled the word surgery.

[RStapler]

Excellent comparison of all the usual meds we take for TN. Very technical but packed with useful information.

http://health.utah.gov/medicaid/pharmacy/drugregimen/files/Anticonvulsant%20Agents%20-%20Update%202005.pdf

[JeanC]

Here are links to Oregon Health and Science University's Dept. of Neurological Surgery Facial Pain sites (note that the "new" classification for facial pain (it's now been around for a few years) is not widely accepted as yet):

Facial Pain (http://www.ohsu.edu/facialpain/)

A new classification for facial pain (http://www.ohsu.edu/facialpain/facial_pain-dx.shtml)

TN - Diagnostic Questionnaire (https://neurosurgery.ohsu.edu/tgn.php)

Note: Don't let the definition of Atypical Facial Pain in this new classification throw you. Atypical Facial Pain has up to now often been a catchall for some docs for anything that they couldn't clearly put into the other categories - possibly because they didn't have the knowledge or experience to properly diagnose facial pain. This is not that - Dr. Burchiel, who developed this scheme, I believe somewhere wrote that he had only ever seen one patient who actually fit into this classification. So just because someone may have told you you had "Atypical Facial Pain," doesn't necessarily mean that's where you fit in this classification scheme - they may not have been familiar with these new definitions.

[RStapler]

WebMD has a new web based diagnostic tool that may help those of us still unsure of the diagnosis they got from a health provider. Or even just to see the state of the art in digital medicine.

http://symptoms.webmd.com/default.htm

- Bob S

[leejcaroll]

Here's Dr. Peter Jannetta's Face Pain website. It has descriptions of various face pains, some of which can be confused with TN and vice-versa.
(Note: a number of typos and misspellings - eg. "myofacial" - it's myofascial and correct in some places - but in general, good descriptions).

http://www.wpahs.org/AGH/neuro/jannetta/Facepain.htm

Also, please read the disclaimer -

http://www.wpahs.org/AGH/neuro/jannetta/#disclaimer

Peter Jannetta is the pioneer of the Microvascular Decompression (MVD) surgical treatment for Trigeminal Neuralgia. His intro page is -

http://www.wpahs.org/AGH/neuro/jannetta/

There are a number of useful links on those pages as well.

And click here for the TNA's Medical Advisory Board (http://tna-support.org/newlook/more_files/mab.htm) Members. Each name is a link to that person's bio, which generally includes a link to their professional website.

I would like to add my book to these links. A PAINED LIFE, a chronic pain journey. The TNA has refused to put it at their site because Dr. Jannetta paralyzed my face and that is in the book, along with the rest of my story. My book is the first and only one written on the experience of living wth and fighting against TN. Here is the link for the first chapter excerpt.
https://www2.xlibris.com/bookstore/book_excerpt.asp?bookid=18435
leej

[Fizzbw]

Self hypnosis resource, Dr Darby has been to many TNA (UK) meetings.

http://www.drdarby.com/

Niki x

[leejcaroll]

As a certified hypnotherapist. that is very interesting. I was taught that self-hypnosis is essentialy othing more than afformations however, I believe that self-hypnosis is a valuable tool and when done correctly has many benefits. Whether it would work for something like tic I don't know.
I do not know if you may be referring to my information about the Miracle God gave me, through one 20 minute self-hypnosis experience.
I have tried to get pain docs, and a psychiatrist who specializes in hypnosis in doing it the way the Miracle 'gave' it to me to no avail. At that time, and I beleive as of now too, it is only done thru 'glove anaesthesia' and talking to the pain,
Thanks for the link.

[1Lily]

Here is a site that sells pill holders, reminders, etc. - especially valuable for those who must take anti-seizure meds many times a day:

http://www.forgettingthepill.com/

I wear a little beeper from this site on my belt that is programmed to go off 4 times a day. I find it VERY helpful
Lily

[ella138]

As I see this question come up over and over on this forum, I thought I should put a permanent link to the story in this useful website section. This is an article explaining why the trigeminal nerve is more active at just before or during the first few days of a woman's period

Here is an excerpt

"... A drop in estrogen is the trigger. From puberty until menopause, our hormones rise and fall with each period, with estrogen levels rising a few days after the period starts and remaining high through ovulation and the next two weeks. In the absence of a pregnancy, the estrogen level drops, a process that begins one to two days before the actual onset of the period. It is these hormone changes that set up complicated brain reactions in women susceptible to migraines. These include:

- A change in the brain enzyme monoamine oxidase (MAO).
- A decrease in the neurotransmitter, serotonin.
- A decrease in the level of certain endorphins, the brain's natural painkillers.
- Activation of fibers that run through the trigeminal nerve. (A major nerve that supplies sensation to the front half of the head).
- A sterile inflammation. Brain proteins are released from the irritated nerve fibers causing small vessels in and around the brain to swell, and fluid from these vessels to flow out into the surrounding tissue. ..."

To read the whole story go to http://www.msnbc.msn.com/id/4465789/

This MSNBC video interview explains it very well.
http://www.msnbc.msn.com/id/21134540/vp/4513612#4513612

[aldsupport]

A Trigeminal Neuralgia patient community for emotional support. http://www.livingwithtn.org.