I am living with TN. I've been living with this for 10 years (misdiagnosed for 8) I am currently taking gabapentin 3600mg/day. I have just ordered a vitamin pack geared specifically toward TN relief. I get 8 hours of sleep n I try not to have any stress. My episodes the last week have become more frequent. I have a tumor that rests on the nerve in 4 places. My neurologist says if they go in they would cause more damage than good because of the position of the tumor. He did send me to a neurosurgeon in Miami n he said the same "let's keep an eye on it". I'm frustrated!

Hello SherriC,

Welcome to the NeuroTalk Support Groups.

Here is the link to the
Trigeminal Neuralgia Forum

Check out the old posts there and at the top of the forum there are the "Sticky" threads and they contain information, useful websites and other resources that may be helpful.

take care.

Hi SherrieC,
My TN is caused by a knot of arteries around the nerve before the branching. This causes parasthesia as well as the chronic pain events. I can understand your frustration at it being inoperable as I am too much of a risk under anaesthetic to have a sheath fitted (heart). I am also a cancer survivor - 1 year. Can you not have Chemo and/or Radiotherapy on the tumour to try to remove it?
Either way, know that you are not alone in suffering this pain. I have severe Neurological Hypersensitivity and have Lidocaine Infusions and take Ketamine, oral Morphine and Tramadol which dulls my whole nervous system. Gapapentin caused a severe reaction, made my eyes swell and made it feel as though the front of my head had split open.
There are other meds to treat TN, but all take time to build up in your system. Hopefully your Neuro will hit on the right one for you soon.
Find ways to ease your frustration - coming on here to vent is one way, and there are always members around for support. Above all else avoid Depression.
Always here for a chat.

Dave.

Welcome SherrieC.

Sherrie,

Hello and welcome, happy to see you have come to be with us, it a great place to be. As you can see we have a great number and caring fellow members here, where you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

Thank you so much. This is the first time I have been on any forum. You sight made me smile, thank you

Hello DarJ,

Welcome to the NeuroTalk Support Groups.

If you need help finding any particular forum or information for your health conditions please just let us know.

Welcome Sherrie,

I know that you will find compassion and companionship here. I second English Dave on the radiation question. I had a plantar fibroma treated by radiation and my radiation oncologist does gamma knife for TN. Obviously your situation is delicate so maybe not an option but worth a consult. Also, not all neurosurgeons are comfortable with peripheral nerve issues. Some are mostly spine guys. Peripheral nerve sometimes falls to a plastic surgeon trained in microsurgery or peripheral nerve surgery. Something else I needed...these specialists are hard to find but they are out there. I required a 3.5 hour complicated nerve repair done under microscope. A lot of doctors would have said it couldn't be done and I did have to travel three hours for my procedure but it was worth it.

Hope you find relief soon,
Littlepaw

Welcome DarJ.

DarJ,

Hello and welcome, happy to see you have come to be with us, it a great place to be. As you can see we have a great number and caring fellow members here, where you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene