How I survived, researched, and overcame Trigeminal Neuralgia

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I'm going to tell my story so it will be kind of long, but has a great end ing..promise;-). In 2011, at age 29, I noticed a sharp pain when I brushed my teeth. At the time, like many others, I assumed it was dental related. I went to the dentist and they found nothing wrong. As the weeks went on, the pain started happening when I talked, brushed, washed my face, clenched my teeth, slept, smiled, if the wind blew hard, etc. It was the WORST pain of my life. It felt like an electric shock going off in my the left side of my face by my jaw. Sometimes the pain would be just a quick stab, and other times the pain would vibrate through my face and all I could do was stop all motion and wait until it passed. I would even wake up out of my sleep sometimes from the pain if I accidentally turned on my left side. The pain would last for weeks then go away for a week and I thought it was over. BIG MISTAKE! It came back with a vengeance.

After many painful days and nights, I started looking up my symptoms on the internet (yeah for Google) and the same diagnosis kept coming up..Trigeminal Neuralgia. I was confused because although my symptoms matched, it said that this disease usually showed itself in older individuals and I was only 29. I made an appointment with my physician and after cruelly poking my facing with his finger after I told him my symptoms, he confirmed that although it was rare for my age, I had TN. He prescribed me a steroid prescription and sent me on my way. No further explanation. If I had not already researched this, I would have been lost. So I took the pills, and besides making me gain a couple pounds, the pain remained. By now, I had researched so much about TN, I felt like an expert. I called my physician and asked to be referred to a Neurologist.

Long story short on this part, Before the Neurologist saw me , he sent me to get MRI which was clean so no MS and he spent all of three minutes seeing me, told me I had TN, gave me a prescription for TEGRETOL, and sent me on my way. No further explanation about my disease. He failed to tell me that the Tegretol would make me CRAZY!!!!!!!!! I am a teacher and the Tegretol had me so nuts, some days I couldn't even function. I have a 2 1/2 yr old and between the Tegretol and pain, I'm sure I was a pain for my child.

The Tegretol did help a little but I could not see myself having to live the rest of my life on Tegretol. It would have been HELL!!! I had already researched Gamma Ray treatment and surgery to cut skull open and put something in between nerve and blood vessel. Both did not appeal to me.

THIS IS WHEN IT GETS GOOD!!! I live in Alabama (US) and one day when I was researching, I saw that a Neurosurgeon in Birmingham, AL, Dr. Swaid N. Swaid does something called CYBERKNIFE TREATMENT. CYBERKNIFE is a non invasive radio surgery that is used to treat everything from cancerous and non cancerous tumors and TRIGEMINAL NEURALGIA!!! It beams a high dose of radiation to the area that precisely goes to the spot needed. I felt like this was my only hope. I called to make an appointment and luckily, a referral was not needed since my Dr. and Neurologist were of no help. I went to see Dr. Swaid the next month and he was the first Dr. to sit down and explain exactly what I had and the treatment options. Because of my age, he thought the brain surgery was better but I told him that I would rather do the Cyberknife. The brain surgery, besides be invasive, would make me have to take 2-3 weeks to recuperate while Cyberknife, I would go into treatment 1-5 times, depending on my xray of my nerves and lay on the table for 45 minutes and left the robot do it's thing and get up and be just fine. No pain, no cutting!

Made my appointment for Cyberknife, went in to talk to Radiologist who told me Cyberknife was just as good as the invasive method. He actually drew me a picture to describe what was going on in my face and told me that I was suffering from Trigeminal Neuralgia in my 3rd trigeminal nerve (the one by the lower jawline). After they looked at my

Xray, they decided I only needed one treatment. They made a mold of my face that is like a net they had to put on my face to keep me prefectly still. I laid on the table, listened to the music of my choice, and listened to the robotic arm buzz over my face for @ 40 minutes. Got up and was on my way. I was warned that the results would not be

immediate. The radiation slowly kills the nerve that is being affected. But month after month, sure enough, the pain became less and less. I went to see Dr. Swaid every 3 month for the next 9 months. He said by the 6th month, if the pain was gone, most likely it would be gone forever. The only side effect I have is that sometimes when I chew on that side of my face, because the nerve was killed, I get a little painless tightening in my jaw (like lock jaw) for a few seconds. I laugh because I'll take that anyday over TN and it only happens usually when I chew something really tough on that side

I have been pain free for about a year now but I'll never forget the worst part of my life. I encourage anyone dealing with TN TO DO YOUR RESEARCH and do what is best for you. If you have a Hospital that offers Cyberknife in your area, I encourage you to look into it. Never give up hope that you can't overcome this and know that there are others that have had to deal with this too....You DO NOT have to settle for taking medication for this disease for the rest of your life! RESEARCH, RESEARCH RESEARCH. God Bless!!!

26 likes, 244 replies

244 Replies

  • Edited

    Hi, I love your story. It is very similar to mine! I am also a teacher AND the neurologist and doc only had drugs to offer. The first drug stopped working after 3-4 weeks, the second drug made me CRAZY and DYSFUNCTIONAL . I couldn't do anything! During this time, I researched like crazy, talked to a couple surgeons then found a doc here in Portland, OR who specialized in TN surgery. He offered a procedure called radio frequency thermal surgery where he puts a needle in my face into the trigeminal nerve and fries / burns it .

    My effected nerve, like yours, was the one along the jawline (mandible) but on the right side.

    Now I have numbness of the muscles along the nerve but, like you, I laugh because it is nothing compared to that awful TN pain. Mine was exactly like yours...electric shock-like, sometimes lasting a few seconds or a few minutes. I felt terrorized by this pain. Was unpredictable and got worse and more frequent. I was screaming on the floor at night enough times to do whatever I had to to stop it!

    So glad they found ways to stop it. I had the radio frequency surgery because there was a possibility it was MS related.

    Bottom line, I got my life back and hope the nerve doesn't grow back ( they can grow back). At which time I will do this again.

    Yes, research, research, research! Be your own advocate. You do NOT have to live with TN pain and you do not have to live a life being heavily drugged.


    • Posted

      Can you provide the doctor name please. I live in Southern Oregon.
    • Posted

      Once the nerve was "fried", did this affect the way you looked when you ...smiled, ate, talked  etc?



    • Posted

      Hi,  I, too, developed TN in my late 20's & went through the drug (Tegretol, Dilantin, etc.) therapies, but fortunately I was allergic to them all.  When I researched them & found that Tegretol breaks down bone marrow, I was relieved (but not from the horrible pain.)  I felt that I could live through the pain because I would only have an episode of TN once or twice a year, for a few weeks, coincidentally during the most stressful times of my career as a speech/language therapist in the schools.  Over time, the episodes continued until I finally went to a specialist at OHSU in Portland for the MVD procedure.  I got some relief, however, after several years, I am experiencing the similar symptoms( not quite as severe) again.  I would like to know who your doc was in Portland, because the one I had was a total ___, with no bedside manner whatsoever!  I feel for you young people dealing with this horrendous condition as I am now 61 & feel grateful that I got thru 30+years with it.  Now, I am retired, kids all grown up, etc. so it is alittle easier with less burdens.  But, still it is a nightmare to deal with when one has all the stresses of life .  Take care and blessings to you all who are diagnosed with this condition.



    • Edited

      Hi Wayne 

      I too have had my TN burned 3 times, the first time  it lasted a year ; the 2nd time 6 months the 3rd time it didn't take I had no relief which led me to Herbal Supplement therapy because I did not want to do the Gamma knife. 

      I am thankful to say I am pain free after taking Myelin Sheath Support from

      Planetary Herbals. It repairs and heals the Myelin Sheath therefore getting to the root of our pain. 

    • Posted

      Hi Renee. My son has it for about 60 seconds 3x a day. The worse thing I ever seen. It would help so much, just to clarify, you just took the myelin sheath and your pain free? No surgery then the herb? What amount did u take every day(dosage) of the Myelin Sheath?? Ty and God bless you
    • Posted

      Hi Debra...

      Fellow TN sufferer in ASHLAND...would love to "connect" with you and compare TN "notes"

      Hopefully you still receive emails and such and since  we are both in Southern Oregon..


      Bob Watson


    • Posted

      I’ve done it all, Gamma Knife x 2, surgery, and nothing worked. I’m on Tegretol/carbamazepine 3 x a day. It helps but still have pain.  Does the herbal supplement really work?  I’ll try anything to get off of the drugs. Thanks Donna from Tennessee 
    • Posted

      Hi Donna, what herbal suppluments are you referring to?  Thanks,  My daughter is dealing with TN
    • Posted

      I have just started using the myelin sheath.. does it really do anything ? Should I continue? The carbamazepine is making nuts so please forgive me for just replying out of the blue like that 
    • Posted

      Hi Dawn

      Sometimes it takes awhile for the Mylein Sheath Support to work herbal supplements heal the body ,they do not put a band aid on the problem and cause more problems.

      Today I can babysit my grandbabies, go to work ,the gym etc because of the combination of Mylein Sheath Support,fish oil , D3, B12.

      There are many people whom have complete pain free relief due to this same herbal therapy .

      Praying you get the same results !

    • Posted


      Yes I have been taking Mylein Sheath Support ,fish oil , D3 and B12 for my complete pain free results! The lack of Mylein Sheath causes the pain & shocks we feel that are more painful than could ever be described.

      Please help yourselves and get these for anyone dealing with TN

    • Posted

      1 tablet each morning one at night do not take on an empty stomach

      Every morning 1 fish oil 1 Mylein Sheath Support 1 D3 & 2 B 12

      Herbal supplements heal the body

      I had 3 injection Burns on the TNerve only for my pain to return

      Please try this

    • Posted

      How long did the Myelin Sheath Support take to start working?  I have heard about this supplement before but haven't tried it yet.

    • Posted

      Hi , I hope your having a great weekend!

      It took a few weeks for my TN to go in remission after taking the Mylein Sheath Support. I am beyond grateful for this herbal supplement.

    • Posted

      The herbal supplement Mylein Sheath Support ,fish oil , B12 & D3 is a combination for healing for people who develop TN due to lack of Mylein Sheath.

      Some people who have TN due to a dental implant have not gotten relief from the supplements.

    • Posted


      I read about Mylein Sheath and bought some but have not taken it yet. 

      How did it work for you? How long before you noticed ? 

    • Posted

      Hi Kristy,

      I have not tried myelin sheath either, sorry.


    • Posted

      Hi Donna, those 2 drugs put me in the hospital with a condition called Dress Syndrome where I had a rash all over my body and it was affecting my liver. I had to come off of them and was put on Baclofen, didn't really help until I had surgery last year.

    • Posted

      hi Renee, and others. can i ask where you were able to buy the Planetary Herbals Myelin Sheath support? I've looked at about 6 or 7 places online and they all say "out of stock" thanks Am desperate as you can imagine. megan

    • Posted

      Hi Renee,

      Are you still taking the Myelin Sheath support? I just started taking this a week ago. I still have a little pain. Is it still working for you?

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