Trigeminal neuralgia

[ericamanda01]

I know there are some who suffer from TN here on the Dis. and I was curious if anyone knows of any support boards online. (something similar to posting like here) I haven't had any luck finding one. Thanks in advance.

 

[JessicaR]

This is the only one I know of other than an email group (listed below).
Its connected to Brain Talk Communities and has a wealth of info and support. I am a member for years of the site, different community. Hope you find it useful.
http://brain.hastypastry.net/forums/forumdisplay.php?f=271


TN-L an email discussion group devoted to trigeminal neuralgia and facial pain
You can join this group by sending the message "sub TN-L your name" to listserv@uafsysb.uark.edu
To send mail to the group, write to: tn-l@uafsysb.uark.edu

 

[Cool-Beans]

I don't. You might try the NIH's Neurological people, though I don't know how much help they'd be. 800-352-9424 or www.ninds.nih.gov They list the following resources on the website:

www.endthepain.org

info@fpa-support.org



You could also try searching with "tic douloureux".

I'm so sorry you have to suffer with that.

 

[ericamanda01]

Thanks so much! I was finally diagnosed about 3 years ago but I have been suffering for about 6 years. I just wanted to talk to some more people that know what it's like. Not that my family isn't supportive, but I know that must get tired of hearing about it sometimes.

 

[Poohlovr]

By all means, visit http://www.fpa-support.org/support/index.html

There, you can look for a support group in your area, or get info on how to start one.

There is an e-mail "support" group (the one JessicaR listed above) but it's not very active. When I first joined, many years ago, it was a busy group, but has fallen off in the past couple of years. There are sometimes periods of several days that I don't get any new postings.

They do have a conference every year--alternates east and west coasts.

Last, but not least, I'm here, if you want to talk.

I've had TN for 15 yrs.

 

[ericamanda01]

By all means, visit http://www.fpa-support.org/support/index.html

There, you can look for a support group in your area, or get info on how to start one.

There is an e-mail "support" group (the one JessicaR listed above) but it's not very active. When I first joined, many years ago, it was a busy group, but has fallen off in the past couple of years. There are sometimes periods of several days that I don't get any new postings.

They do have a conference every year--alternates east and west coasts.

Last, but not least, I'm here, if you want to talk.

I've had TN for 15 yrs.

Thanks so much I really appreciate it.

 

[mickeyboat]

I was just diagnosed with this today after a quick office visit. My doctor has prescribed carbamazepine.

I think I have had flare-ups for years - thought it was a sinus infection, thought it was dental related. But it doesn't appear to be the case. Advil does take care of it most of the time.

Anyone have any insight for a newbie?

TIA,
Denae

 

[texaslassie]

I was diagnosed 15 years ago. I went to numerous dentist, endontists. My next stop would've been a psychiatrist because nobody believed how much pain I was in! X-rays didn't show anything. Thank the Lord for one kind, exceptionally caring dentist that pointed me in the direction of a neurologist (a very good one)

I was only 25 when diagnosed. I was prescribed tegretol same med as you and the pain all went away. I was on it for six months. I periodically take tegretol when there's a flare up, but otherwise I'm doing great.

Those shocking pains up the side of my head were horrific I used to get really bad ones when I went up or down stairs or when cold air hit my face.

I really don't think tegretol is something to take regularly because of the liver damage it can cause.

Hope you are feeling better and have a great, painfree holiday!

 

[C.Ann]

DD was diagnosed with this last spring.. She couldn't take any of the usual medications they prescribe for it though, so she just has to deal with it the best she can.. Some of the medications she takes for other health issues and injuries help somewhat, so she's not in excruciating pain on a frequent basis anymore..

Hope the neds help you! It's not a "fun" thing to have..

 

[GRUMPY PIRATE]

You might have better luck posting this on the DisABILITIES board!!

I would think that others might browse there!

just an FYI.

 

[jojo9610]

I was diagnosed with it about 10 years ago. After the drugs stopped working I finally had a Microvascular Decompression about 4 years ago. I've been pain free since. Don't give up hope. Find a good neuro that knows TN and is willing to try different treatment options.

 

[Poohlovr]

I've had it about 16 or so yrs (who's counting, anymore?). Several yrs ago, I had a Gamma Knife tx and was pain free for about 5-5 1/2 yrs.

I really have no worthwhile tips for a "newbie"--how can you give someone a tip about living in Hell?

I will tell you to try to isolate your "trigger" and try to avoid touching or coming into contact with that area as much as is humanly possible (for years, I could not wash one side of my face with any pressure--I may have had the dirtiest left side of a face on this planet!).

If you need any dental work, find a dentist who is experienced in patients with TN. There are certain anesthetics (actually a cocktail of a few) that are recommended to use with TN.

Realize that your Tegretol may not always be effective and you will need to increase your dose and your neuro may add other meds to the Tegretol.

See your doctor on a regular basis for bloodwork--a CBC and a liver function panel. Tegretol is hard on the liver. One of the newer drugs-Lyrica- is not damaging to the liver at all. I don't take it because it's considered a Tier 3 drug with my insurance and the monthly cost made me

Take your medicine on a regular basis. Tegretol must maintain a certain level in your bloodstream to be therapeutic.

Understand that the meds used to tx TN may make you feel spacey or "out of it". This might pass as you grow accustomed to the drug. If not, talk to your doctor and try a new med (I never could take Neurontin. I used to bounce off of walls--literally--while taking it. My first neuro told me that Neurontin HAD to work. He would not believe that I could not function on it. I changed neuros and the new told me I was "super sensitive" to it and he had other patients who reacted the same way to it).

It's a sad fact that narcotics do not affect TN. There has been some relief reported with Oyxcontin, but the jury is still out on that.

You may notice that you have periods of time (some people have reported years) that you are pain free with no treatment, but, in the vast majority of cases, TN worsens the longer you have it (as the damage to the nerve worsens).

If you find you are no longer getting relief with your meds, it's time to think about a procedure. Some are invasive (Macrovascular Decompression, Severing the nerve), Some are not (Gamma Knife, electric current). Then, there are several semi-invasive procedures (glycerol injections, alcohol injection, balloon compression).

Good luck and as you can see, you are not alone.

 

[mickeyboat]

Thank you guys for responding.

I filled my Rx last night and it is actually for Neurontin. I have only taken two doses, so I think it is too early to know whether it is working, but I sure hope it does. The pain woke me up at 12:30 last night and it took about 30 minutes before the Advil kicked in enough so I could go back to sleep. I am having some pain now, but it isn't terrible.

I think mine is triggered by cold beverages. I also notice it gets bad at night, so I think that sleeping on my left side is causing trouble, too.

I go between thinking this is going to be an infrequent problem and the meds are going to fix it, to thinking this is going to be a lifetime of agony. I am only 38. DH is less than understanding and supportive at this point.

I have not seen a neurologist yet, my family doctor made the diagnosis. I wonder how long I should stay this route before I insist on a referral. He did order some blood work yesterday, including a CBC.

Thank you guys for letting me know I am not alone. to everyone suffering.

Denae

 

[wdhinn89]

 

[OhhBother]

I don't know if this info is helpful or not, but I work at a hospital system that offers CyberKnife treatment for trigeminal neuralgia. The results are remarkable, and it's a non-invasive, pain-free treatment.

Many hospitals now have CyberKnife (it's most commonly used in cancer treatment). You can read more about it here: http://www.wellmont.org/MedicalServices/Neurology/trigeminalneuralgia.htm

 

[mickeyboat]

Thanks for taking the time to respond, guys.

I have been pain free this afternoon - we will see what happens when the Advil wears off - but it has been a good day.

I have been doing a lot of internet research which both makes me feel better and makes me feel worse. I am still really debating about insisting on a neurologist, but if this flare-up does not last long, and is managed by the meds, maybe I won't need to. My Dr. said that he thougt the problem might be caused by a recent virus, but I haven't found that as a cause in any of my research. I am also a little worried about MS, but I do not have any other symptoms, and typically TN is more common in more advanced cases of MS.

Heading home for the weekend. Hope it is a good and pain-free one for everyone.

Denae

 

[C.Ann]

Thanks for taking the time to respond, guys.

I have been pain free this afternoon - we will see what happens when the Advil wears off - but it has been a good day.

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Yay!! Hope you continue to feel well..