Many people come to me for help. Friends, family, acquaintances, and many strangers email, call, text and message me for advice on homeschooling and health and wellness issues, but especially trigeminal neuralgia. Often times what I have to say is unexpected and taken with a grain of salt. And that is fine, and everyone’s right. But having to write a long essay message and answer questions that are met with skepticism and disbelief are discouraging to me. I want to help and can only share what has worked for me. My best advice is to share the method of sifting through the world’s and your own personal BS in this manor: consider, discern, and apply. A very special person gave these three words, in this order, to me. So please hear me out and add anything relevant to your growing knowledge base. And when things aren’t going well, please reconsider some things that have worked for me, that you discarded because you did not believe they’d work for you.
A little background information on me and TN:
I am at level 38 and have had the unfortunate lot of trigeminal neuralgia for 16 of those years. I have experienced the ice pick in your brain, face on fire, and electrical shock sensations separately and even all together at various stages through my wellness journey. I was 22 when I had my first shock. Because of my age, there were concerns that I may have MS. I’ve been to countless doctors, most of whom were unfamiliar with treating TN, and almost all were unsure of treating me because of my age. Being put on meds was the easy fix. Encouraged to have a brain surgery with questionable and alarming statistics was the quickest way to be relieved from having to care for me. I was put on meds that did not treat my pain, caused me to gain 50 pounds, become depressed, and caused brain fog. I often forget what I’m saying mid-sentence and have difficulty explaining myself. Sometimes what I say is not what I neither intended nor what I believed I said, therefore it seems I am twisting my truth, but there are countless others who’ve experienced the same effects from the same drugs.
At one point I was a single mom with three jobs, homeschooled my three kids, went to college full time and dealt with the excruciating, life-changing pain that comes with TN. I was thought to be a liar that made this up to gain sympathy. I was accused of having not been right with God to have Him allow this in my life. I’ve been told countless times that I haven’t prayed enough or in the right way, and that I didn’t have enough faith. I’ve been met with hundreds of blank stares by people who cannot wrap their brains around the fact that this illness with a nickname of The Suicide Disease, IS MEDICALLY KNOWN TO BE THE MOST PAINFUL ILLNESS. And why is that?
Because I look fine. I look healthy. Not only that, I am a person full of passion, who loves people with every fiber of my being. I believe I am here to help. I believe it, I live it, and I do the best I can, although sometimes it’s not the greatest to take care of myself, so I can be here when people need me. When one encounters a TN shock or TN pain, there is nothing they can do. It is debilitating. When a person has TN, their body says there is pain (in the face), when there really is no pain, and so the sensory information is miscommunicated, or misfires, thus sending the pain I described before. So if I’m struck with a bolt of lighting-like shock, the last thing I’m going to do is cry for help, hold my face, or run to the bathroom.
Each movement will most likely only trigger more pain. So, we, the TN sufferers are statues. We learn to take the pain without crying for help. Our bodies attack their selves because we decided to wash our face, take a shower, open a door, brush our teeth, say, “I love you.” Anything that involves movement of the face, sensation of the face, heck, sometimes just thinking about it, is a trigger for pain.
This is not meant for anyone to feel sorry for me/us. This is not a pity party. This isn’t a cry for anything. While mercy would be something more than people forgetting what we deal with, more than scoffs by family who want to compare pain (physical or mental- doesn’t matter), more than your friends who have never even read about TN to understand what you deal with, or co-workers who walk pass you and never say hi or smile (hey, maybe they forget how challenging it is for us to do those things), mercy is invaluable to all- the sufferers, the caretakers, and those in such great health and wonderful lots that they take for granted those in need, especially those that suffer in silence, mercy is needed.
This is meant for those who are tired of doing the same thing. I do everything differently. What I am going to share may seem strange. But please do three things: consider, discern, and apply.
FYI: I am successfully managing my pain. Today is 05/03/2018. My last shock (about 10 seconds) was mid 09/2017, and previous to that my last shock was July 2016 (several short shocks throughout one day), previous to that my last shock was in February 2016 (The onset was January and lasted for a month. These were off and on all day for a month. Pain intensity was a 6.), previous to that my last shock was September 2014. September 2014 concluded a year and a half of pain.
I was in pain all 24 hours for each day for a year in a half. I wanted to die. Previous to that TN followed no rhyme or reason as to when, where, intensity, or frequency. It just came. And I’ve always just dealt with things until that long episode I had. I had enough of everything and everyone. And I’m going to share with you what I’ve done so far.
I apologize for the delay for those asking for my help. I’ve had a traumatic experience, as Hurricane Harvey drowned my house and all that I had. Not to mention, I do still homeschool, and my second child graduates this year. I have a lot on my plate, as do you. But I am here, and I am happy to share. Please bear with me.
Part II: Trial & Error or Is it Real or Just in My Head?
Coming Soon!
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