goatgal your words made me gasp and brought tears to my eyes. I have TN. You have captured it perfectly (unfortunately).
i have known no pain that can compare. And yes, I have dropped to my knees. Yes I have drooled. Too painful to swallow my own saliva. Yes, I was misdiagnosed and underwent unnecessary dental extractions.
I pray that you can remain free of this pain. Thank you for your words.
Dear erash, my empathy flows toward you. TN once experienced cannot be forgotten. It is also difficult to explain. What is the vocabulary for this level of pain, to express the terror felt at the sudden onset, the awareness that at any moment it may uncoil and strike again? I want to say that I am listening, that I will struggle to describe what happens in the language we share, that to spare you pain, I willingly would share it.
My TN episodes began @ 1995. Recurred more frequently and lasted longer over time. Tegretol (high dose) does control it.
Because it was becoming more difficult to wean off Tegretol, I underwent Gamma Knife surgery in June. I was in a remission at the time.
But per my docs, I weaned very slowly from the Tegretol. 3 months later, I had 6 Days off Tegretol before I began noticing mild TN pain. I immediately restarted my meds.
I feel as if TN is an evil beast that lies waiting and knows when I think I've won. Then it reminds me that he is always there and "cannot be forgotten"
You call TN an evil beast that lies waiting...which captures exactly the feeling of invasion and possession. I wear a balaclava in winter because the demon slumbering on the left side of my face is awakened by cold and wind. Given the right circumstances, I feel the beast stir, begin to stretch, and show his power...try telling this to someone who wants to know how much pain you have with those little emoticons or a 1-10 scale! You are also correct in saying that TN can teach us about courage and strength.
U got me beat mine started in 98 I think, but it is on both sides of my face. Beat that(I recommend cyberknife surgery if u can find it. Painless and non invasive, we have one here in Phoenix. Wish I brave enough to wean down my cocktail Teg was a long time ago, bu yes the fear.
Royce
& yes I was smiling and poking my tongue at u as I typed this
RoyceNewton i don't want to win that contest. Both sides is horrible. Glad the cyber is working for u. I think very similar to the gamma knife I had that didn't ? Work (told often recurs and told may recur but to lesser degree so maybe it worked?)
Told next would be an open surgical decompression. Forgot the terminology. For now, my Tegretol is working (hope the TN monster didn't hear that!)
o but u have to win at something don't u? NO NO NO there r lots stronger drugs this I know ask before u let them cut you, the decompression will not fix anything, I think we need to talk my dear, after X-mas perhaps
I wrote this as a way of talking to my daughter, who pulled away from me during the time I was experiencing the flurry of incidents that led to my diagnosis. Since I couldn't talk to her, and knew no one else to talk with about what was going on in my body, I turned to writing. As all of us with MS know, the symptoms of invisible damage can be terrifying. From moment to moment, everything we think we know about the way we live in the world can shift and alter. Talking (and writing) is a way of learning how to go forward with support. Thank you for responding to my words. I feel less alone (and less crazy) now.
Yes it is an evil slave master, because I am its toy thing. I have been for 18* yeas on both sides now which is a new and unexpected development, fun is it not? O do write very well, so descriptive, put me there gasping and imagining my own trembling and fear.
Goatgal, it's Fancy 1959, and I am officially welcome you to this wonderful chat room. Goatgal, your story, the way he presented it, was heart-wrenching. To find yourself incapacitated due to the pain, exposed out in the elements, incapable to tthe point you cannot even summon help due to the pain is my worst fear. We also live on the farm and I have balance issues, not the nerves in yor face. I worry about falling and going down and not being able to get up. Not near the intensity that you deal with just balance issues.
To be honest I had to look up Trigeminal Neuralgia. Just when i thought i had heard of all the bad side effects that come along with MS I learned a new one, yours. I'm only opposed to way but I'm not sure how I can help you and that is a feeling I do not like. I believe you were going to educate me more than I'm going to help you but perhaps together we can sort things out and look for ways to lessen your side effects. Remember together we are stronger. I wish I could give you more encouragement or more ideas about your trigeminal neuralgia. Perhaps as a chat room we can make this a goal of ours to see what we can find out about your nerve issues and try to give you support and ideas / information we have learned. Thank you for joining with us. Please continue to reply and to post with us because your input is invaluable. Please keep in touch and let us know what's going on with you.
Dear Fancy 1959, Thank you so much for your warm and heartfelt words. There's no need to worry on my MS account because for now, I am coping very well. When I retired from a long teaching career, I bought 20 acres in Virginia and began to create a small farm. For several years, I was happy with my farm dogs, my hens (and the occasional rooster), my dairy goats, organic vegetable gardens, a small apple orchard. I participated in a local farmers' market, selling eggs, sourdough bread, jams and jellies and what ever the gardens produced in surplus. And then it all fell apart. My tendency to trip increased, I had days of blurry vision, my feet became numb, occasional leg spasms became frequent and prolonged. A rooster attacked from behind and I fell down. I slipped on icy steps. I was wheeling a bale of hay in the cart and tipped over, barrow, bale and me...and...and... When I mentioned these things to my GP he was dismissive, so I went on. Then one night, after a wonderful rain with thunder and lightning, I went out late to latch the hens' coop for the night, leant forward, fell over, stood and fell, stood and fell, stood and fell. I was crawling back to the house when a friend who had come for a visit came out with a light to find me. She helped me back to the house and left for the airport the next morning after I promised her I would self refer to a neurologist. I reached my 70 year that summer of diagnosis...and went through all the predictable stages: disbelief, denial, fear and anger. I sold the farm and returned to the area I had come from...only to realize that wherever I was, I was going to have MS, and that maybe I couldn't manage 20 acres alone (I've been divorced since 1980), but I could live where I need to for the well being of my spirit. Right now, I am working on the goal of returning to a place I came to love. A friend is building a small house, on four wooded acres, with room enough for a small garden and a few hens. He expects to finish the house in July. At that time, I hope sell here and return there. Though there is no certainty that any of this will happen, every breath I take is full of possibility. But I know now how to live through tornado warnings, power failures (no small matter when water comes from a well), ice storms, snow on the ground for too long, summer heat and humidity. I know how to listen to my body, how to rest before I get too tired, to be kind to myself and I know I can do it. More at another time. I have my usual morning walk, a dentist appointment, and prep to do for tomorrow (I work a few days each month helping teachers with instructional issues). Take care of yourself. Count your blessings. Thank you for reaching out. Linda
Hi Linda, you should write a novel, you have a wonderful way with words, I enjoyed reading your post, I wish it was under different circumstances and I am sorry that you have had to give up your passion. I had TM, it was so painful, every day I would wake up from my 2 hour night time nap, because the pain was so intense. I would walk around with a heat pad glued to my neck and I would eat with one hand while the other hand held the heat pad in place, I even burnt my neck. They tried me on tegretol but I was allergic to it, eventually my acupuncturist found that I had a trapped nerve which turned out that one of my vertebrae was serating my spinal cord, which in turn was causing the TM. They took my disc out and about 9 months later things had settled down, like Erash I had unnecessary dental work, but it was a very painful time. I hope things with the new house to live in comes to fruition for you. Blessings Jimeka
Jimeka, it's Fancy1959. Heartfelt words come easily when dealing with real people who reach out and touch a cord within you, and touch your life as well. Each and every time I reply to a post it seems that I gain knowledge from that person's reflection about their own condition. I can't imagine the pain in your face and how you deal with it. What's the old saying you should walk a mile in another person's shoes to understand what the other person deals with. It also hold true for MS patients even though we think we have it bad we should smile, hold our heads up and realize there are other MS patients that have unimaginable pain that we've never considered. We should count ourselves lucky not to be within their ranks. Thank you for being such an interactive and reliable part of our chat room. You make this a stronger place, a kinder place, and are vital to this chat room's very soul.
Goatgal, or Linda, it's Fancy1959 or Linda also, how about that. Maybe our love of living in the country and stubbornness to do so runs in our names but I'm not happy unless I live in the country either. For the time being my husband of 30 years agrees with me. I hope we can continue to manage but I sure know that I don't hold my share of the work like I used to. 4 acres is enough to let you feel free of the confines of the city with your chickens and garden and to enjoy it your sense self which sounds like it's rooted in the country. Please keep in touch. Like I said I think I could learn much from you and I know this chat room grows and strengthens with each and every member that joins it. Remember please that together we are stronger. I look forward to continuing our conversation at another time and getting to know each other better. Take care of yourself and make sure you don't put yourself In harm's way.
Wow, an amazing piece from one of our new members, goatgal - thank you for posting, and welcome to My MSAA Community as well!
I've had some serious trigeminal-related issues in my past, so seeing that word in your post really hit home. Thank you again for sharing this beautiful written piece.
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