Trigeminal Neuralgia*

Hi @amberprep, sorry you are having one of those ice pick headaches. You have probably already left for church so maybe you can file this link from the American Institute of Stress away for the next time.

Take a Deep Breath
-- https://www.stress.org/take-a-deep-breath

Many of you have talked about symptoms from your trigeminal neuralgia (TN). Wanted to touch base and see how things are going. I believe your responses will be helpful to others in this conversation, as well.

@kim_o - how has your pain been lately? You mentioned you noted that salt, stress and caffeine were your biggest triggers. Have you found it challenging to moderate these?

@amberpep - are you having any more ice pick headaches? You mentioned stress in your last post about these. Do you also find stress to be a trigger?

@annpie88 - how is your mother's TN? Have you decided what the next steps for her will be?

@jmjlove - how is your type 2 TN? Are you experiencing any more tooth pains?

Stress is my main trigger. I also get pain in my right eye after reading for a long time. The pain radiates to the right side of my face. I had gamma knife and about 75% of facial pain is gone. I can get a shot for the area that is painful but there is a 20% risk of losing use of right side of face. I choose to continue meds and deal with pain unless it gets worse.

@lisalucier

Yes, still tooth pain, also left side face pain, eye, scalp, and neck pain. It's pretty constant, but I still am grateful the electric zaps haven't occurred in a long time. The ache is not touched by otc pain relievers, but does respond to opioid pain relievers, which do not work well for the zaps. It's very hard to deal with cool breezes, so scarves are a must. All in all I am not the worst case and for that, again, I am most grateful. Thank you for asking, Lisa. God bless!

Hi, @vickylynn - would you suggest gamma knife to others with trigeminal neuralgia, then? What was the experience like of receiving this treatment?

I would definitely recommend gamma knife. I had a hard time functioning because of the pain. I really don't remember having the gamma knife procedure. I was sedated enough to move or answer questions but I don't remember any of it. I had a halo screwed to my head in 4 places. I don't remember the doctor putting the halo on. At the end of my procedure I do remember the nurse taking the halo off. I had a severe headache for a little while maybe an hour. My son took me home and I just had to take it easy a few days. I highly recommend having this done. It has taken about two years for the full effect of the radiation to do it its job. My pain is minimal compared to what I had.

My brother has suffered from this extremely painful facial/brain disorder for years. He went through surgery approx 6 years ago and has managed quite well UNTIL NOW...the excruciating pain has returned and he’s about to give up says he will not live this way again! I’m desperately searching for answers and options for him. Anyone with information would be most helpful. thanks

Hello @paulamacmorgan, welcome to Connect. I see you also started a conversation wondering if anyone had been treated for this condition at Mayo Clinic. Has your brother received an appointment already at Mayo Clinic, or are you still in the process of gathering information and hoping to seek an appointment? If you are comfortable sharing, what surgery initially helped your brother? Here is a bit of information on how Mayo Clinic treats trigeminal neuralgia, https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/diagnosis-treatment/drc-20353347. Has your brother tried some of these treatments other than surgery?

@paulamacmorgan - I'd like to add my welcome to Mayo Clinic Connect. @jennheadlee @vickylynn @kim_o @annpie88 @jmjlove @carmelo1morrone may have some suggestions for you and your brother from their own or a loved one's experiences about controlling the pain from trigeminal neuralgia. Perhaps they can also share whether they or anyone they are aware of has had surgery for this condition and then had it come back to be very painful again.

How has this weekend been painwise for your brother, paulamacmorgan?

Can someone please tell me their experience and /or success at Mayo to treat Trigeminal Neuralgia as I have a brother with a severe case and I’m looking for help