Trigeminal Neuralgia Type 2

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Trigeminal Neuralgia Type 2
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    Grasping at straws

    I’ve been seeing a neurologist for almost a year, my visit this past Tuesday he told me he didn’t know how to help me anymore. I’m angry, frustrated and I don’t know what to do! There aren’t many options in my area for neurologist, so I’m searching. But when I’m in a flair I’m pretty much stupid. The pain is horrific, especially when both sides are bothering me at the same time.
    #TrigeminalNeuralgiaType1 #TrigeminalNeuralgiaType2


    Tired of Being Bald Today

    I’ve been bald for a while now, because the hair on my scalp causes a lot of pain. I have been trying for the last week to allow my hair to grow in, but it is killing me.

    I’ve just been so tired of not having hair. It usually doesn’t bother me, but with the intense heat wave, I have had to put sunscreen on my head, which adds further touch and that doesn’t help. With more kids out and about, they pipe up and comment, that gets old. I’m tired of being asked if it is cancer and explaining.

    So I stay home. When I am trying to break that mold. I hate it.

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    First cherry blossom inspired beaded tree prototype in process 🌸🌸💜

    Almost don't even care about all the sadness, anxiexty, overwhelm, hopelessness and pain as long as I can still get lost in the shinies and sparklies. ✨🎆

    Almost. 🤏

    #TrigeminalNeuralgiaType2 #TrigeminalNeuralgiaType1 #TrigeminalNeuralgia #ChronicPain #SchizoaffectiveDisorder #Anxiety #Insomnia


    Do they believe me anymore? #chronipain #TrigeminalNeuralgiaType2 #facepain #TrigeminalNeuralgia

    I feel like my family is either done with me being in pain and are irritated by it or they have stopped believing me about my pain. I’m so depressed and down because I feel so alone.



    My Nueroscience nurse practitioner has referred me to an otolaryngologist to diagnose TNtupe 2 vs glossopharaengeal neuralgia. Any ideas why?

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    Stop being so stubborn, Spoonie!

    So...I have decided to stop being so stubborn.

    Though I’d rather not, I’ve decided to not just accept, but embrace the diagnoses I live with now. I’ve spent the last almost-five years wanting to be who I was back then. Though I’ve felt bittersweet relief as diagnoses were finally made, I’ve refused to truly accept them. And that’s not helping anyone, not me, or my loved ones.

    So, I’m taking steps forward. They aren’t always pretty. In fact, they’re frequently painful and unsteady. However, they are wise steps nonetheless. Don’t get me wrong, I’ll still grieve. There will be moments, hours, and days I wish this wasn’t my reality. But if I have things in place to help me, ideally, the frustration will be less.

    I’m setting up a Feel Better Cart!

    I will keep items which bring comfort: tissues; throat drops; bottled water; heating pad (with extension cord); fluffy socks; pain meds; a few snacks. I will also include things which bring joy: Bible studies; a candle; mindless magazines; pictures of my children & grandson; colored pens and a sketch pad. 🙂

    I’ve decided to stop being stubborn. To use the things I’m surrounded by to save my energy and sustain it. To take care of myself. And in turn, take care of others.

    You’re worth it, Friend.
    What would be on your Feel Better Cart?

    #Fibromyalgia #Migraine #TrigeminalNeuralgiaType2 #spoonielife #livewiser #worthit

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    Assistance Kitty #Cats #facialpain #TrigeminalNeuralgiaType2

    Every now and then, despite doing everything right my #facialpain /#TrigeminalNeuralgiaType2 (the consultant said it was difficult to differentiate between the two in chronic cases - I've had it more than 20 years) flares up. Sometimes Tara Gethin will lie on the pillow across the top of my head. There was one occasion where she actually put her paw over the affected ear...

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    Pain Through Pandemic

    More good news from my hardwork:

    The Facial Pain Research Foundation wrote about my experiences during COVID-19.

    I am very proud of this and the words I spoke to the world. Please have a read:


    #TrigeminalNeuralgia #COVID19 #pandemic #facialpain #BrainSurgery #TicDouloureux #Proudofmyself #MentalHealth #Accomplishments #pleaseshare #braintumors


    The one thing...

    I am stuck in a rut, my therapist asked what I want most. I just want my old life back but know that’s not possible. What’s the one thing you want most right now? #TrigeminalNeuralgiaType2 #Lupus #Endometriosis #InflammatoryArthritis #MixedConnectiveTissueDiseaseMCTD #BackPain #Undiagnosed

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    I made this quote art to remind myself of who I am.

    We are Warriors in the most challenging, painful, and eternal battle against chronic pain in all its insidious iterations.

    Fight on, I know it's dark. You are scared, alone, and afraid it will never end. Our burden in this world is massive, but our spirits are stronger than anything life, others, or our bodies may throw at us.

    It's okay to to tired. It's okay to be livid pissed. And it's okay to feel it all. Scream, fight, and claw your way through this dammed day. You are not alone.

    You stand in solidarity alongside your comrads in arms. We are a force to be reckoned with. We are Spoonie Warriors.

    #TrigeminalNeuralgiaType2 #TrigeminalNeuralgia #TrigeminalNeuralgiaType1 #CrohnsDisease #Leukemia #MyalgicEncephalomyelitis #Chemotherapy #RheumatoidArthritis #DegenerativeDiscDisease #PTSD #CPTSD #EDSAwareness #TraumaticBrainInjury #TBISurvivor #braintumors