Trigeminal Neuralgia*

I get what is called trigeminal neuralgia or ice pick headaches. I've read everything I could on it and it seems a lot of folks over 50 get them. Excuse my language, but they are hellish. It's a sharp, stabbing pain on the left, or right, side of my head, usually somewhere over the ear or right behind it. It's as if someone stabs me with a hot poker. I take Rx Motrin and since I started taking Lamictal, they are much less frequent. When I've tried to tell my family about this, they just blow it off like it was nothing ….. well, if they got them they'd soon feel differently.
abby

Hi Jenn @jennheadlee, Welcome to Mayo Clinic Connect. There is another discussion for Trigeminal Neuralgia where your post will receive more visibility and you will be able to meet other members discussing the condtion. I'm tagging our moderator @lisalucier to see if we should move your discussion into the following discussion. While we wait you may want to read through the discussion and meet some of the other members.

Groups > Brain & Nervous System > Trigeminal Neuralgia*
-- https://connect.mayoclinic.org/discussion/trigeminal-neuralgia-2273cc/

Are you able to share a little more about the symptoms you are having now?

Mayo Clinic’s info on trigeminal neuralgia treatments list a variety of anticonvulsants, antispasmodic agents or botox injections:
-- http://mayocl.in/1Mz18C8

You may wish to read this older discussion thread where Connect members are talking about their experiences with treatment
-- http://mayocl.in/28SOKk5

John

My mother is suffering greatly with TN. She is my Dad’s primary caretaker and she is at the point where we need to look at different options to help her. She got the diagnosis at years ago from a neurologist in Savannah, Georgia. At that time he mentioned going in to cut the nerves. This frightened her (and he did not give very good statistics on it helping). She has been treating the flare ups with gabapentin and tramadol when it flares up. It seems to be flaring up more frequently and lasting longer (we think possible due to the stress of caring for my father). This current episode she actually took Percocet and ended up vomiting which obviously was misery with the pain that she is already in. She decided at this point that we need to find an expert and try to find something else to do! She is located in Statesboro, Georgia (about an hour from Savannah). Some people have told us to go to Mayo in Jacksonville, Fl. But we direction on who to go to and what would be a reasonable next step.

My mother is suffering greatly with TN. She is my Dad’s primary caretaker and she is at the point where we need to look at different options to help her. She got the diagnosis at years ago from a neurologist in Savannah, Georgia. At that time he mentioned going in to cut the nerves. This frightened her (and he did not give very good statistics on it helping). She has been treating the flare ups with gabapentin and tramadol when it flares up. It seems to be flaring up more frequently and lasting longer (we think possible due to the stress of caring for my father). This current episode she actually took Percocet and ended up vomiting which obviously was misery with the pain that she is already in. She decided at this point that we need to find an expert and try to find something else to do! She is located in Statesboro, Georgia (about an hour from Savannah). Some people have told us to go to Mayo in Jacksonville, Fl. But we direction on who to go to and what would be a reasonable next step.

We have heard that BOTOX could be an option but do not know about how to go about finding a provider that is trained specifically in Tn.

Hello @annpie88, welcome to Connect. I can't imagine how difficult it must be for your mother to be your dads primary caregiver and needing help herself. Thank you for being an advocate for her. I know stress was one of my triggers for neuropathy but I only have numbness for a symptom and not pain. Here is an explanation of possible triggers for flare ups which I think could also apply to Trigeminal Neuralgia.

What Makes Neuropathy Flare up? Here Are 4 Common Causes and The Top 3 Solutions
— https://nervepainguide.org/neuropathy-flare-ups/

If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

Has her doctor made any suggestions or reviewed her medications?

Thank you so much. Years ago she saw a neurologist that mention a type of surgery where he would cut a nerve. He made it sound like it was a “crap shoot” and may or may not get the correct nerve. She has been treating with gabapentin when she feels that a flare up is coming on. She says that she can not take the gabapentin daily or that she would be a complete zombie. We weren’t sure if Mayo required prior authorization or referral from her current doctor but looks like no referral is necessary. I think we need to check on insurance at this point.

Please pray for me, or think of me - whatever works for you. I'm about to leave for church and I've got a miserable ice pick headache all on the right side. I know what it's from .... the week has been HIGH STRESS, so it's not surprising.
Thanks, abby

Please pray for me, or think of me - whatever works for you. I'm about to leave for church and I've got a miserable ice pick headache all on the right side. I know what it's from .... the week has been HIGH STRESS, so it's not surprising.
Thanks, abby