Trigeminal Neuralgia

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Trigeminal Neuralgia
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    My battle today

    Today I am fighting thoughts of being completely defeated.
    I know from my past experiences that I will make it through, but today I am struggling to hold onto the truth of that.

    I am grieving the fact that I was well for so long after my surgery. I want that pain free time to come back. I may have grieved liked this last before, but my meds have made me forget how it truly was. I have forgotten many months of my life because of them and I don't want to deal with that again. I just want to be well.

    So today, my battle is all in my head, but I can only look forward to when I wake up tomorrow and have a new chance to see my life with this disease differently.



    I’m new here!

    Hi, my name is zargon20. I'm here because I need some people to connect with to support and get support from with my trigeminal neuralgia battle.


    Seeing Myself in a Support Group

    Part 1 of 2 I have spent way too much of the last two years staring at boxes on computer screens.

    I taught my parents how to use Zoom.

    I had happy hours and work meetings and training sessions.

    I hate it even though it has been a salve on days when we couldn’t meet in person.

    It has bridged distances and kept me in my pajama pants.

    One thing I hate so much about it is that you can see yourself in that little square. The whole time, you are faced with your own image. I’ve noticed bags under my eyes, wrinkles I didn’t know I had, and when I was long overdue for a haircut.

    The other night I logged onto a support group meeting for facial pain. I’ve had this diagnosis for close to eight years, but Zoom brought me to my first support group. I’ve considered attending before, but they were an hour away and I would have had to take off work and figure out where to park. I didn’t think about attending when my symptoms were at bay, but lately, they have been returning. COVID took support groups all online and I figured it was time to join.

    I logged onto one in a few months ago and it didn’t seem terrible. Some people were in so much pain they were hard to look at, but a few seemed like me. The host was friendly and kept it short and kept us on track. Someone asked an honest, gut-wrenching question about how to not make this your identity when it takes up so much of who you are. Her honesty made me think that maybe these are my people. I spoke up and promised to attend the next one I could.

    I logged on a month later, but these were not the same people as last time. This was not the same host. There was no friendly banter. The host made sure that each person got to tell their story. That they got their time. Which is maybe one of the most important gifts we can offer someone. However, I was uncomfortable from the beginning.

    Each person ticked through their dosage, their symptoms and how long they’d been doing this. People interrupted with questions, “What caused it?” “Who is your doctor?” “Have you tried ________?” “Have you had surgery?” A few people tacked on a heart question at the end. “How do you keep going when it feels so overwhelming?” More than one person mentioned suicide.

    Everything in me wanted to click “Leave Meeting.” These were not my people even though I saw myself in everything they said.

    No one was answering the hard questions. The moderator let them know when it was time for someone new to have a turn. Each time we moved on, and the next person gave their medical history. I squirmed in my seat. I wanted to bolt. I debated over and over if this was good for me or making things worse. I barely spoke. A nurse shared that she just wanted to go back to her old life. She wanted to go back to work. She wanted to go back to being a better mom. One woman could barely talk. Not because of pain, but because she had lost so much memory. She literally read from an excel sheet where she had written everything down. She had given her dose. I did the math. I had been on more. I wondered how I had sounded in those months. I stayed on mute.

    A few people shared symptoms that gave me relief. I am not crazy. This is not in my head. It is real because they feel it too. But I didn’t relish in the “me too-ness” I still resisted. Someone droned about their doctor, specific procedures, or what kind of MRI to get .

    I spoke last. The two hour meeting had already gone over time and I didn’t want to waste any more with my medical history, diagnosis mishaps or dosages. I gave them the elevator version, that I had been bad, gotten better but my symptoms have started to return. I told them that I was really here because so much of what is hard about this disease isn’t the physical pain (although it is unspeakably hard), but the isolation. The fear. The aloneness. That even with a great army of support that I need to connect with people who understand. I told the nurse that I was sorry but her life likely will never go back to “normal”. That it is forever changed. I promised her that it can still be good and full. That she can expand in the places she has lost. I told her that I’m still trying to figure it out, but I know that talking to people helps. I didn’t talk long and I felt relief when I finished. Like had told the truth to a group of people that didn’t require a copay. That wouldn’t feel the need to bring me dinner or look at me with pity. They knew.

    I’ve since realized that we are all in different spaces. Support groups can offer a safe space to vent, ask questions or even tick through our symptoms. Lord knows we all worry about burdening our family and friends with these conversations. One size might


    Seeing Myself in a Support Group

    Part 2 of 2 now fit all, but Zoom is giving us so many options that we did not have before. All the tiny squares were a continuum of possibility and pain. The kind of relief I hope for and versions of myself I hated to recognize. Regardless of where I fit, at least it was a place I didn’t have to hide.

    Eventually before we closed out, I caught my own eye. My own square.

    I stared at my Zoom box and somehow felt so disconnected from that person. The sick girl in a support group. I realized that maybe I had an opportunity.

    I looked myself literally in the eye.

    I told myself I was strong. That I was resilient. That I was hopeful. Still. I repeated it (silently of course because I didn’t want to look completely crazy).

    Last, I told my Zoom me that I was brave and then she smiled. I said, “look around, these might not all be your people but you are not alone.”



    I’m new here!

    Hi, my name is TinyChicken. I'm here because sometimes it all is too overwhelming.

    #MightyTogether #Anxiety #Depression #Migraine #TrigeminalNeuralgia #Fibromyalgia #PTSD #Cancer #HeartDisease #MentalHealth #concussion #PostmyocardialInfarctionSyndrome #TrigeminalNeuralgia


    I’m new here!

    Hi, my name is mjstamps. I'm here because I feel so alone and guilty for not being able to do the things I used to do.

    #MightyTogether #Anxiety #Depression #Migraine #OCD #TrigeminalNeuralgia #medullaryspongekidney(MSK)


    I’m new here!

    Hi, my name is Sue. I'm diagnosed with Trigeminal neuralgia.

    #MightyTogether #TrigeminalNeuralgia


    The Light #Depression #RheumatoidArthritis #Endometriosis #AnkylosingSpondylitis #Fibromyalgia #TrigeminalNeuralgia

    The light

    No One ever tells you how hard life really is.
    They fill your head with premeditated worries about neverending bills and jobs you will hate
    They tell you to get used to being tired and forget about the plans that you made
    They say growing up is all about being honest while learning how to be fake.
    They don't tell you about the thoughts you think when you come home at night
    Washing your hands and face of today's lost dreams,
    You stand crying for a minute because you can't help but think
    while the forbidden tears roll down your cheeks
    About how hard life really is.
    It's more than what they told us. Atleast it is for me.

    Because with the cards that I was dealt i had no choice but to see,
    the dark side of this world before it ever saw me.
    And I can't be the only one that sees
    There's more to this then what they say

    It's feeling numb but knowing pain
    It's constant guilt and endless shame
    It's dark thoughts on sunny days
    It's feeling lost when you know the way
    It's wanting to speak with no words to say
    It's wanting to forgive but your hearts full of hate
    It's wanting to forget but your minds full of rage
    It's dreaming of being free from a life time of pain
    It's a constant game
    Of you against yourself
    And you against the world
    An invisible war that you can never be prepared for

    Because they can't ever put it into words about how hard life really is
    Because it's losing hope when hopes all you had
    It's one step forward two steps back
    It's getting ahead just to get caught in a trap
    So life can catch you quicker and take all that you have
    Faster than if you had stayed in the back
    Because that's the way life really is
    You've never been ahead, you're just on a different path
    And I'm not being selfish but this is all that I have
    To offer to those who have been caught in this same trap
    Who have been lost and who have been afraid and who have been speechless and been ashamed
    If it means nothing to noone except for you I want you to know
    that it's okay. Just let go
    But they don't tell you THAT that much do they?
    They leave out the fact that you have fought and fought and fought and though you are wounded, you are still standing
    They leave out the fact that you would not have been taught life's greatest lessons without this constant changing
    They forgot to mention that behind every dark corner there is a light that's STILL gleaming,
    Waiting to be noticed to remind you to never stop dreaming
    Never stop believing,
    because even though this world can be deceiving do not believe that your life has no meaning
    Because it does
You are that light.
    You are the very flickering flame that someone needs
    You are the voice that speaks to a soul in need,
    You are the light
    You are the hand that holds a broken piece to someones heart that's needing peace
    You are the smile that changes a persons day, you are the friendly face that pauses the pain
    You ARE the light
    You are the eyes that see the purpose in others when they can't seem to see
    You are the energy it takes to help them believe that just like you, you have got to believe
    That you ARE the light
    You are the phone call that could save a persons life
    You are the friend that could pull out the knife - in the back of someone who's losing sight
    of life's greatest purpose because they've been too afraid to fight
    The battle against what the world wants us to believe is right
    So if you feel like your losing your purpose I hope to God that you heard this
    Because you are most certainly worth it no matter how bad that you're hurting
    I hope you know your important, I hope you know that you're loved
    I hope you know that you're not alone and that you are always enough
    I hope you know that you're strong, I hope you know that you got this
    I hope you remember all the battles that you won and you fight this
    I hope you stay with me, and that you never forget that you are that light.
    And most importantly I hope you learn to love your life.


    I’m new here!

    Hi, my name is Simboney7. I'm here because I was diagnosed back in 2006 with Trigeminal Neuralgia and the list just goes on from there like Dominos. I’m tired but will post.

    #MightyTogether #PTSD #Fibromyalgia