Trigeminal neuralgia and brain tumor

I also had Trigenimal Neuralgia I only got relief after my tumor was removed. I had mine removed at Mayo, get their advice.

Have you tried CBD oil in the form of tincture? Or RSO(Rick Simpson Oil)? I take CBD in the morning so I can function during the day and RSO at night before I go to bed so I can sleep off any THC affects it might give me. This has helped me tons and enabled me to come off from chemotherapy last October. I had a stage 3 Anaplastic Astrocytoma tumor Idh1 tumor removed in March 2015 and on Temodar for 3 years including maintenance. They saw a spot and after taking the CBD and RSO. The spot was no longer seen on MRIs. Since my last MRI in Jan. 2019 I am now out 3 months for my next one. This is a first, since my surgery, where they have been watching me very closely.

Hi @joyceg @vickieg and @shell68, I'd also like to bring @ccmars and @jcciam2000 into this discussion to share their experiences with trigeminal neuralgia and brain tumor.

You may also be interested in this discussion:
- Trigeminal Neuralgia* https://connect.mayoclinic.org/discussion/trigeminal-neuralgia-2273cc/

Hi @shell68! I am so encouraged by your comment and your story. I have grade 2 anaplastic astrocytoma idh-1, 2 years post surgery. I am researching RSO for treatment and would love to discuss your experience if possible.
-Taylor

I did use CBD oil in the form of tincture. I used that more than RSO. I could use the CBD and not have any side effects and still function and drive. With RSO was not so easily used. I only used it at night so I didn't have the side effects. This February it will be 8 years since my grandmal seizure in the middle of the night. March 6th will be 8 years since my crainiotomy. I have been very blessed that all of my scans have been clear. I still have major hair loss, which I have been told radiation killed the hairfolicals and it will never grow back. I have memory loss. I. Have had several "episodes " I call them. My left arm goes wonky and heavily hangs on my side and hard to navigate, my left leg goes limp. I have gone to the hospital after a couple of these, they run cat scan check my blood and can only contribute it to the scar tissue where the tumor was removed. The neurologist says I am a low dosage of lamagritrin, and keep track of any more. I find if I get very frustrated or leaning on my left side it can cause one. They refer to my "episodes as an TIA. So I will continue to have to take seizure med the rest of my life as a preventative . I usually can feel it coming on but I don't want to loose my ability to drive.

Due to a large tumor on my brain stem that consumed the facial and trigeminal nerves, I did not get relief from the trigeminal neuralgia pain until it was resectioned seven years ago. They tried every pain medication, but all of them failed to help with the pain and made me feel like a zombie.

My guess is because of your wife's age, the surgery may be too demanding.

My tumor is growing again and trigeminal neuralgia is making itself known again. I will never have surgery again. Medical Marijuana has been a God-send. I eat a quarter gummy upon waking, and half an hour before going to sleep. This allows me to fall back asleep when awoken, usually from pain. It's amazing. If I can get a good night's sleep, the pain is bearable during the day. I haven't had a pain pill or pharmaceutical for three years.

Don't give up seeking help for her. She is fortunate to have a caregiver seeking g solutions.

Hello @taysuz and welcome to Mayo Clinic Connect. I am glad you were able to find encouragement through @shell68 and their comment and see that they have come in to share more with you! I will let you reply to them and further that connection!