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45,249 Views • Oct 6, 2021 • Click to toggle off description
Every year, October 7th is Trigeminal Neuralgia Awareness Day.
To support the research given to TN, and how to better care for TN sufferers, consider checking out facingfacialpain.org/.
#tnwarrior #trigeminalneuralgia
Views : 45,249
Genre: Sports
Date of upload: Oct 6, 2021 ^^
Rating : 4.927 (20/1,080 LTDR)
RYD date created : 2022-02-06T09:07:40.274073Z
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YouTube Comments - 396 Comments
Top Comments of this video!! :3
My mother was diagnosed at age 79. She said it was like firecrackers exploding on her face. After finally finding a diagnosis, she tried a variety of medications, a variety of radiation treatments, nerve blocks, radiation, you name it; and at age 80 underwent decompression surgery in Vermont. She stayed on medication for a few years, gradually decreasing dosage. She will be 97 next month and no more TGN.
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This has runned my life, I've lost my job, every few days some times everyday I get the pain for 3 to 4 hours at a time, stay strong everyone this TN isn't easy ❤️❤️
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Such a beautifully made video. I can’t imagine enduring this. She is such a warrior. I am praying for her and for everyone who suffers from debilitating pain.
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My heart goes to you and everyone who suffers from this condition. I suffer from it and its demonic. I have never felt so scared and frustrated in my life. I was diagnosed about 4 years and the medication was working but I have been feeling the severe pain since two weeks ago. I haven't told my family because I am afraid once I tell them then it becomes real that I am not okay. So far I am trying to do it alone. I am hopefully seeing my physician tomorrow whom I'm praying will help me figure out the next step. I find that physician sometimes don't know what to do so they kinda abandon you. All the best to everyone.
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As a Husband that’s wife is going thru this I couldn’t stop chocking up …:( you def tugged my Heart String because your saying exactly what she is saying
I sit and watch her and feel helpless
Your courage I applaud you
Thank you
Sending lots of love and Hope that that you and your Family is pain free all around
Thank you for the video
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I am a 28 year old, Canadian male and I was just diagnosed with TN three days ago. I had an attack that brought me to my knees in tears, and I passed out(I'm guessing because I could handle the pain). My pain has barely subsided over these days and I am absolutely terrified. This pain, everyones stories. I am so scared. This video has helped me calm down. I am praying for everyone with this disease. I pray the good days for you are great and the bad ones are bearable. I pray our doctors and the combination with OHIP can help us and recognize the urgency.
3 |
I appreciate your personal testimony. I have been dealing with TN since 2013. Nobody knows what pain we are going through but us. There is no relief from this pain. Suffering everyday is a way of life which is impossible to cope with. Doctors cannot cure this disease. They experiment with us TN patients. Living a life of pills becomes the norm which is horrible to think chemicals invented by man become an everyday & night norm. I have been praying for healing but have not been healed. Life is not fair. Everybody that has TN needs prayer along with other diseases too. "The Good Doctor" had an episode about TN which i was glad to see some exposure about this. Prayer is needed for us sufferers as well as other people suffering from other diseases too.
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As I’m sitting here in a major episode I cannot thank you enough for your video. You are strong and that gives me hope
36 |
Type 1 n 2 sister here we need to bring light to this. So many of us suffer in silence ❤ sending love
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I’m 38 and I was diagnosed with this back in 21’ but suffered from the pain since 2018, which I suffered in silence because I literally couldn’t talk. My pain is on the left side of my face and everything she’s saying is absolutely true. The stabbing/shocking pain is indescribable. My body has gotten immune to the meds so they’ve literally stopped working for me. My insurance isn’t as good, so I’m praying that I can get approved for some of the pain treatments. I feel your hurt/pain my sister and being in pain without people understanding is frustrating. 🖤🙏🏾
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I was diagnosed 12 years ago. I also had the gamma knife and the surgery and soooo many diff meds over the years. I even had all my teeth pulled cuz all the side effect from those meds. On November 2 2021 I had a spinal nerve stimulator put in place on the right side. My pain has gone down so significantly that I am now being apart of my family and friends life. Doing most all daily activities. I do have some pain rated 10 pains on the Richter scale but they are 90% +|~ gone!! I had to mourn who I was pre-TN. my husband and I went thru so much cuz of TN almost to the point of divorce. Ppl can see that you are hurting but (I hate to say it) get tired of not having the whole you. You naturally change your likes, passions, how you think and speak as we get older. And TN changes who you are to your core! Even if we get 100% better tomorrow. We will not walk away without any big scars.
You are all in my thoughts and my heart! You are never alone!
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Cathryn, this was posted a year ago now but I’ve just found you because I was searching for any and all TN info. I was diagnosed this year at 46yrs old with both types of TN as well. I can’t work now, and I had to stop the continuing education that I was doing. I have basically been in bed for 2 months! I recently had a molar removed, and wait with cautious optimism that it’s going to relieve some of the pain and flashes of stabbing electricity.
Just know that (unfortunately) you have a community of automatic friends around you that know exactly what you are going through. I am so sorry that you are dealing with this too, I wish for a cure for this awful condition with all my heart!
5 |
I was already crying and finishing your sentences by minute 4. I am a 38 y/o woman suffering from both types of TN as well. Hearing you speak made me feel less alone. I would love to follow your journey if you are sharing it anywhere online. Youve helped me today. Youve given me hope. I'm so sorry you have run into so many walls on your search for a pain-free life and I hope your road has gotten a little smoother over the last couple years.
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I’m 19 years old and got diagnosed with TN 2 summers ago, I’m glad this video is out to shed light on it. She seems like such a great person. She’s in my prayers ❤️
35 |
Bless your heart.. I have been going through this for a year, I’m A1 only, just shocks. The worst one I’ve had is about 50 shocks at once😢 people just don’t know what we go through.. I hope you are pain free forever ☺️
7 |
I’m so sorry that the one medication that worked for you has been defunded 😢 Chronic pain is never taken as seriously as it should be. My heart goes out to you.
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Thank you for your video. I’ve been dealing with this for 20 years. in fact, I’m experiencing it right now, which is why I’m here. I hope she finds comfort.
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I was diagnosed in 2011 and I just nodded throughout the whole video. It is so debilitating at times. I try to embrace the good time bc the bad times are horrible.
7 |
I was diagnosed with TN about 5 years ago. I have type 1, the feeling of electric shocks coming from behind my ear across my face to my eye and nose makes me scream in pain at times. I then went into a pain free phase for about 3 years and it was amazing not have that pain. Then Bam last night it's back with a vengeance.. not the welcome I wanted to greet me to the start of 2022... I have been put on pre gabalin this time instead of carbamezapine, I am hoping it kicks in soon. I wouldn't wish this pain on my enemy and I take my hat off to you for being such a brave woman. Thank you for your video. Xx
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@jeffboadway
1 year ago
Since many have asked, here is an update from my sister-in-law Cathryn, as of today (June 29, 2022). Thank you to the many who have shown concern for her and her TN journey! At the beginning of June Cathryn underwent a procedure, and this is her update for you all! "It is called a Peripheral Nerve Stimulator (PNS), and this one is the permanent implant (I had the trial version in November 2021 to see if it would work for me). There is a battery in my chest that the wires are attached to, and they were placed along my neck, up behind my ear into a loop that was secured to my skull, and then pushed forward along the three trigeminal nerve branches on the right side of my face. It basically provides interference for the messages my nerves are sending to the pain receptors in my brain. The trigeminal nerve is interpreting every sensation (touch, temperature, etc) as pain, the frequencies that are programmed into the PNS interrupt that signals sent by the nerves, which confuses the brain. The first week after the procedure was difficult with all of the swelling and aches from surgery, but I could tell quite quickly that it was working because I wasn’t experiencing the burning left from my glycerol needle rhizotomy in 2019. A month post-op I have noticed a drastic decrease in electric shocks and stabbing pains in addition to that burning being so much reduced. I have found that the constant ache or boring, rolling pains still happen, but most of my pain areas are covered by this device and it provides three frequencies that I can switch between and I can change the amplitudes along each wire as well. My pain is not gone, of course, but this therapy provides me the ability to manage it so much better. I am hoping to be able to decrease the medications that I had to add in when my lidocaine & ketamine infusions were no longer covered in September of last year."
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