My recovery from a diagnosis of trigeminal neuralgia

I was diagnosed with trigeminal neuralgia five years ago and have had success in being pain free thanks to mind body practices learned from Dr. John Stracks. Not that I don’t have flare ups - I do about every three months - but the flare up is short lived and usually only requires one dose (250mg) of oxcarbazepine per day for a few days. And when people ask what causes TN, I say “thoughts.” the habit of negative or unkind thoughts towards oneself takes years to treat with compassion (for this person).

When I was diagnosed, I felt like my life had stopped. The attacks were ongoing and seemed uncontrollable. The two neurologists I visited both said that there was nothing that could be done and that the pain would only get worse. They assured me that they would do their best by adjusting the dosage of various medications to keep me comfortable. The medications were strong and it was difficult to work. I couldn't drive. I despaired that I would have to use my disability insurance to support myself.

About five months after my diagnosis, while I was struggling to find a way to manage, I met Dr. John Stracks at Northwestern Memorial Hospital in Chicago. He said that he believed I didn't have to suffer as I did. I joined his Mind Body Class where over six weeks I learned with other people, who suffered from severe Mind Body pain, practices to free ourselves. Within the first week everyone in the class stopped taking their medications. As long as I was meeting with the class I didn't need medication. When the class ended the pain little by little returned. That was the beginning of another adventure. This time as I continued to meet with Dr. Stracks and other people he referred me to through the community of Mind Body Syndrome, I learned how to bring care and compassion to this person.

I have flare ups a few times a year, but they are small - twinges usually that remind me that there's more practice needed. More compassion.

I hope this narration of my experience helps others who suffer from TN. It's a horrible, life-stopping pain. And I truly believe that we don't have to suffer that pain.
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Thanks so much, Beth, for sharing your success story. I'm sure it will inspire many people with TN to follow this path to recovery.

I love your response to what causes TN as "thoughts". So very true.

Congratulations on your recovery!

 

Thank you, Ellen. And thank you for your story. May you continue in peace and joy.
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Beth Thank you for sharing your story. I need to read and know that there is a hope for Trigeminal Neuralgia Sufferes. I have been diagnosed with that condition and suffer so many other symptoms. I believed that all this symptoms are TMS. Thank you.

 

Dear Lola, I wish you well - and I wish you hope. My journey has had twists and turns over the years, yet I have found that by continuing to hope and continuing to explore the many resources now available concerning TMS, I am able to find freedom from the pain. May you as well. Warmest wishes, Beth

 

Hi Beth, how are you today?

 

please let the success stories continue to be posted if anyone got any

 

Thank you all aof you. I am glad I encountered this forum. When a person is diagnose with Trigeminal Neuralgia, theres a sence of hopelessness and despair. I have tried so many approaches and only mind body approach has helped me greatly. It has been a long road to recovery. Ups and dawns and so much learning on caring, loving and practise self compassion. Sending all of you a warm hug.

 

May I ask how your recovery was like? what did the timeline look like? what did you do specifically?
I read sarno's book healing back pain and tried his appraoch, didn't do anything to me. Now I'm readin alan gordon the way out and trying smatic tracking approach and in the beginning I was able to turn my apin completely off. Now I struggle more with turning it off. At least I did today. Is it normal that the pain starts resisiting as we recover?

 

Hi Matt,
Yes, it’s normal. Check out this thread https://www.tmswiki.org/forum/threads/seasoned-tms-warriors-is-this-true.28358/ (Seasoned TMS warriors: Is this true?)

 

thanks. You just showed me that I have been pushing waaaaaayyy too hard today. I didn't know I could do too much somatic tracking. I did it for hours today and created tension, I guess. I'm gonna do way less now

 

May I ask how do I post a topic for the foum? I don't understand. I wanna post something that we can have a conversation about

 

Reading Dr. Sarno's books has been a lot of help for me. I read healing your back and the divided mind as well. I learned that I have to be true to my self, being congruent with my thoughts and feelings. I learned that part of my personality was a people pleaser and I please others rather than doing things that I really wanted to do. I worked on my past traumas with the help of a Therapis that is trained in Mind and Body approch. Reading Healing your Pain by DR. Howard Shubiner has been great. Also I watched the You Tube Channel videos of Dan Buglio helped me so much. His channel is Pain Free You. In calming the danger signal in the brain and stablishing safety beacuse the brain is scare, so talking to my brain that I am in not danger despaite the symptoms and the way I talk to myself, beacuse I am conviced that I am not broke, that my body is OK. Learned how to deep bread to calm my nervous system. There's so many things to list that I have done and maybe it is a combination of all of them that has worked for me. But know, that there's hope and there's a light at the end of the tunnel. I learned the more I focus on the symptoms the more they persisted. Sending light and good vibes to you and know that we are here to support each other.

 

I feel ya brother! It’s hard not to push! But you will calm down. Use really good head talk. Praise yourself for every little thing. Tell yourself you can just do the bare minimum. Make life a lot lighter. Since I started doing that—after awhile, I started to put a dent in my symptoms. Super small dent, but I’m so happy and excited because now I know this all works!

 

So you don't think I made my pain way worse by doing this? How long do you think I'll need for it to calm down again? Please explain what u mean by putting a dent in your symptoms and hoe it's worked <3

 

Somatic Tracking is a 10 minute exercise used at max. one time per day. The tracking didn't increase your symptoms, but the pressure you are putting on yourself sure did!
Now you know one of the things that can trigger your symptoms - self pressure.
That's exactly what this process is all about, learning things about yourself that you were not fully aware of, or at least aware of how they were impacting you.
Nobody can predict how long it will take a little flair up to calm down. Just keep reminding yourself it WILL calm down, that you are absolutely OK. Pain is only a communication from your body to your brain. It doesn't always mean there is anything wrong at all.
If you have a place to be (eg. home) right now, food to fill your belly, and a bed to sleep in, you are safe. Knowing you are safe is what can help calm your nervous system. Remind your self softly, gently, kindly and without pressure or panic.

Since it seems you may also have some anxiety reading Hope And Help for your Nerves by Dr. Claire Weeks (you can also listen to audio, it's on Audible and Dr. Weekes reads it to you, herself) can really help. She gives very precise direction on how to deal with your anxiety. She is old fashioned and has a very calming voice. The book is also very assuring.

 

@Matt94 , per your question:

“So you don't think I made my pain way worse by doing this? How long do you think I'll need for it to calm down again? Please explain what u mean by putting a dent in your symptoms and hoe it's worked <3“

“Putting a dent” in my symptoms: they are not as intense. It’s hard to explain. I have really weird symptoms. But in general, my whole body is cramped and it feels slightly less cramped. But the intensity still goes up and down, for no apparent reason sometimes. You know how slow a snail crawls, but he still gets somewhere? That’s how slow it’s going. But in the meantime, I’m changing a lot on the inside. Nicer to myself. Better outlook. More Patient.

You probably did stress yourself by pushing yourself so hard to heal. I did the exact same thing. But then again, that’s how I used to do everything. As hard as possible. As fast as possible. As much as possible. Everything was always waaaaaay too much! Then, I realized that’s exactly what’s wrong with me. I started focusing on what’s wrong with my personality, not on my body. What’s wrong with the way that I’m living that causes all this? And I could suddenly see how mean I am to myself. And I started saying when I woke up, “you are ok, even with symptoms. You are still lovable.” I know it sounds crazy. I didn’t believe that would do anything. But it was suggested here to do that.

Long story short: this isn’t a puzzle that has a logical mathematical answer. If you do X for these types of symptoms, you will get better in X weeks. It all has to do with the insides of you. You can’t rush the process. That’s all I know. And setbacks are inevitable. So just try to be as happy each day as you can.

Everyone has a favorite unique healing method. They like certain books, videos, modalities. For me, just coming in this wiki every day has done the most for me. At first, I would conduct searches on various pressing and urgent worries I had about healing. Then after a while, as I read the answers the gurus (these are the folks who have been here awhile and made progress)— as I read their answers, things started to soak in. And the message was Zen. They were all chilled out. They were wise. They had traveled a path. A difficult journey of self discovery. The answer to the healing problem isn’t easy to pass on. It’s so huge, you have to live it. So finally, I just calmed down and tried to at least fake it til I could make it. I faked being nice to myself. I faked that my symptoms didn’t bother me. I faked that I wasn’t terrified. And guess what, I started feeling better.

I’ve been in here 4 months. I have learned the most in this wikis. But before that, I discovered Sarno in 2017. And I studied up on that. Then I started psychotherapy 3 years ago because just reading Sarno and journaling wasn’t working. And before all that—-I had symptoms on and off for more than 20 years that would just go away or subside enough to live with if I just ignored them. So I’ve been at this a long time, in some ways. But the most effective I’ve been at getting better has been since I’ve been here. And I believe, based on the guru stories, that symptoms continue to flare the rest of your life. You just get better at getting rid of them faster. I hope that helps!

 

So how long of a setback was it for you when u overdid somstic tracking?
And will ut really hellp that I'm just telling myself over and over that i'm safe, and my symptoms are safe?

 

Thank you <3