Trigeminal neuritis/neuralgia treatment: What works for you?

Posted by jenkob @jenkob, Aug 19, 2012

I wanted to share my experience with this condition…
Severe but treatable pain in the face and head.

Interested in more discussions like this? Go to the Brain & Nervous System group.

@mariev

My tooth was severely abscessed as well.. are you getting relief from gabapentin? (I am not)

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Yes. At first I had to use a lot of it. Now I am down to one a day. I have had trigeminal neuralgia in the past (idiopathic) several years ago which went away on its own. Then I had this major dental abscess, brought on suddenly by my immunosuppressant for my arthritis (Enbrel). Went from a little dental discomfort to ER visit requiring IV steroids and antibiotics in just a day and a half. That happened in September. Then it happened again in March! Which brought the TN back full force again. Had to up the gabapentin for a while but I'm now back down to my "maintenance" level of one a day. (And I discontinued the Enbrel and am starting a different immunosuppressant which will hopefully not cause these problems.) I wasn't able to get in to see a neurologist until 5 months after the first incident, which wasn't helpful, although he did order a follow up MRI to see how things were doing. Didn't look like any permanent damage, but there was still inflammation in my face (from September and this was February!!), but again, this was one month before my next severe abscess.

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@jem1962

I have experienced this and continue to experience it as a result of a severe abscessed tooth from last September. I am being treated with Gabapentin.

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Hello @jem1962 and welcome to Mayo Clinic Connect. Thank you for joining this discussion and sharing your experience with other members. I am glad to hear that you have been able to address your pain and reduce the amount of Gabapentin as well.

Did your neurologist recommend anything for the remaining inflammation?

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@colleenyoung

Hi @Restless67,
How are you doing Lana? It’s been awhile since we’ve heard from you.

I just wanted to let you know that we’ve been continuing with the updates to the Mayo Clinic Connect website. As I was reviewing the discussion threads I found this long and helpful thread of other members of Connect sharing about their experiences managing trigeminal neuritis/neuralgia. I moved your messages to join this group so you can share with them.

By adding the @ symbol before a person’s username you can tag them into the conversation. I hope the @yearock @zane @jenkob and others will return to join the discussion again.

Colleen
Connect Community Director

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How do I connect with the group interested in managing their trigeminal neuralgia?
Thank you
Ron

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I would like to connect with someone that had TN surgery and also has been experiencing side effects such as headaches and drip down back of throat

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@roninaustin

How do I connect with the group interested in managing their trigeminal neuralgia?
Thank you
Ron

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Hi @roninaustin and @headent
You'll find discussions about trigeminal neuralgia in the Brain & Nervous System support group (https://connect.mayoclinic.org/group/brain-and-nerve-diseases/). I recommend following the group.

To find all relevant TN discussion:
1. Go to the All Discussions page: https://connect.mayoclinic.org/discussions/all/
2. Enter search term "trigeminal" in the Search Discussions field. (On mobile click the magnifying glass, then enter search term.)
3. Click Enter. (On mobile, click Search.)

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@headent

I would like to connect with someone that had TN surgery and also has been experiencing side effects such as headaches and drip down back of throat

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Welcome @headent, I know it must be difficult having bad side effects following TN surgery that was supposed to help. Another member shared there experience here – Trigeminal neuralgia worse 10 years after MVD now tentorial meningioma: https://connect.mayoclinic.org/discussion/trigeminal-neuralgia-worse-10-years-after-mvd-now-tentorial-meningioma/.

Has your surgeon or doctor offered any suggestions to help with the new symptoms?

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@roninaustin

How do I connect with the group interested in managing their trigeminal neuralgia?
Thank you
Ron

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Welcome @roninaustin, I think you are in the right discussion. Even though this is an older discussion, it may be helpful to start at the beginning and read what other members have shared. Here's a link to the first post – https://connect.mayoclinic.org/comment/77141/

I'm not sure if you and others are familiar with this site for TN but I thought I would share it just in case — "The TNA – The Facial Pain Association is a national, non-profit organization dedicated to providing information, mutual aid, support, and encouragement to people with trigeminal neuralgia (TN) and their families." — https://www.facepain.org/

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@johnbishop

Welcome @roninaustin, I think you are in the right discussion. Even though this is an older discussion, it may be helpful to start at the beginning and read what other members have shared. Here's a link to the first post – https://connect.mayoclinic.org/comment/77141/

I'm not sure if you and others are familiar with this site for TN but I thought I would share it just in case — "The TNA – The Facial Pain Association is a national, non-profit organization dedicated to providing information, mutual aid, support, and encouragement to people with trigeminal neuralgia (TN) and their families." — https://www.facepain.org/

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Thanks

—–Original Message—–

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@bren

After suffering with the pain of trigeminal neuralgia and the side effects of drugs like Neurontin and Trileptal, I opted for a Gamma Knife Radiation procedure. In a month, I was off the pills and as the year progressed and scar tissue built up I was pain and pill free. It’s been 4 pain free years and I would do it again if needed.

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Where did you do the gamma knife? I am also suffering with no medications working these days. I am considering the surgical treatments.
Thanks.
Andre.

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Feel so bad for those here who suffer from this ailment.

I'm SO lucky that my symptoms occur so infrequently (18 months or so) and then resolve after a few weeks (usually… fingers-crossed).

Hope new research & developments in this area improves things for all of us.

/LarryG

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