Trigeminal Neuralgia*

Hi Lisa. As to my pain management, I am a transcendental meditator and meditate twice a day 20 mins each time. It sounds aggressive and some will say upon reading that they might not be able to find the time. My personal observation is that time spent for yourself allow more quality time for others and less stress. Just my personal observation - nonjidgements. Because it quells the nervous system there are time when there is no experience of any triGem pain that lasts well beyond the twenty minutes.
I have also tried acupuncture but found it relaxing but generally ineffective for pain management I am taking gabapentin 1200mg., I am in 7th week of the meds. Having worked up to this dosage Limited effectiveness tho. But will continue. My understanding is that when TriGem returns it comes back with a vengeance and modalities that once worked may no longer. I will see.
Of all the modalities the best that I have found is to continue as best I can (and believe me this is hard when every word I utter or every chew I take is accompanied by excruciating pain) to continue to live fully. I am avid equestrian, a member of NYP Mounted and had a 5 hour patrol today. I still practice law and strivr to be the best wife, stepmom and grandma that I can be!! And I just started rowing lessons and have been rowing in the Harlem River each week. As the Bhuddists believe: The human condition comes with pain. But suffering is a choice. I choose not to suffer.
Have a great evening and thanks for your question.

Amen! Anwirk in progress indeed. happy to hear you got some relief. I am grateful for even moments of relief 👌

Hi @ethanmcconkey, I have been diagnosed with trigeminal neuralgia since 2004. My TN is atypical, and I've been told not to use Gammaknife or surgical devices. I'd like to know if this is true with other people diagnosed with ATN. I appreciate the information.

Hi have a meningioma that is growing and the neuro-surgeon recommends a gamma radio laser treatment. Yesterday, I was diagnosed with atrial fibulation and am on eloquis and metopropol. My cardiologist is concerned that the blood thinner might cause a brain bleed into the tumor. The neuro-surgeon said I could wait until Jan to have the gamma treatment but I wonder if I should schedule it earlier. I have Sjogren's syndrome and the neuro-surgeon thinks the tumor could be related to that disease. I have asthma and just got out of the hospital- 6 days and now my pulmonologist will be testing me for COPD. I am 74 and never smoked but everyone in my family did. I also need another hip replacement. It just seems like everything is hitting me at once. Any idea on the gamma treatment and will my other issues cause problems? Thanks

Have you spoken to the doctor about CBD? I read that Sativex has been used for pain. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2503660/
The only catch is, I have also read that taking the correct amount for your body is the KEY. Too little and it doesn't work, too much and it can create more pain. Yet getting the right dose can do wonders (for many, not all): http://profofpot.com/cannabis-can-worsen-pain/

The government website (in ncbi link above) explains it is an oil so very little is absorbed therefore they recommend smoking it. There is another way around smoking it though. There is a water soluble product called 10xPURE which is absorbed immediately when held under the tongue. You can read about that here: https://www.facebook.com/pg/governmentResearch/posts (2nd post down)
I hope with all my heart your husband finds relief. I've had seasons of neuralgia and feel great compassion towards anyone who suffers from it.
Sincerely,
Kim

Thanks so much for your email and the helpful information. I will check out the sites. It is me not my husband that has TriGem. I couldnt imagine our household if both of us had it!! 😉😉🙄. Thanks again!

Since I don’t know how you dosed amitriptyline I can only tell you how I dealt with it for my burning mouth syndrome. My 30-40 mg taken at bedtime stopped working after a while. I then tried gabapentin which did not work at all and caused reflux. When after a few months of trying various things I was recommended to retry amitriptyline but in split doses. I started slow and built up to morning noon and double dose at night and it’s working. If that does not keep things pain free I sometimes add CBD oil between doses.
Good luck

I had dry needling done, which is different than acupuncture and it worked for me. Maybe give that a try.

Hi @sherrylynn - will you share a bit more about the dry needling that worked for you and what that entailed?

After trying Gabapentin with no results, I tried dry needling. My physical therapist had done dry needling on hands and legs, but never on the face. My trigem was in the face, specifically on the right side. It would go from my ear down along my face/jaw and into my cheek. My physical therapist was currently going to classes to learn dry needling in the face. I agreed to allow her to do it so we pretty much worked together. I helped her in school because she could tell them what she did and how my face reacted and they could guide her from there. It took about 5-6 weeks before I saw improvement but things got really good. Dry needling consisted of her taking a needle and putting it into the muscle that was pressing against the inflamed nerves and counting to about 4-5 and then taking it out. The muscle would jump and contract. The muscle retracts and doesn’t press up against the nerves relieving the pain. I started out having it down twice a week and then slowly weaned down. When I stopped I was having it done once every two - three weeks. I can’t say that it wasn’t without pain, but it was minimal compared to the pain of trigem and the results were wonderful! Unfortunately, I was then diagnosed with cancer and could no longer do dry needling due to risk of infection from my compromised immune system. My oncologist was unsure if the chemo I was given (Taxol) would enflame my nerves again or calm them because it typically causes neuropathy. However, my nerves remained calmed so it was a blessing! The cancer is now gone and so is my trigem!!!