For 20 years, I've quietly managed trigeminal neuralgia — a chronic pain disorder that involves sudden attacks of severe facial pain. Now, I'm opening up about this often misunderstood condition.
Dear Christine: In your writing, craft and talent intersect with compassion and transparency for powerful narrative. Well done. You and so many cannot ignore the pain and we must not ignore the issues you raise. Thank you for being an advocate and voice for others.
Gosh, thank you, Andi. I often wish I didn’t have as many health challenges as I do (or the need to process them through writing). But where would I be without writing? Thank you for your kind words.
Oh my gosh, Christine, I am so sorry to hear about this and for what you've gone through. The thing that struck me was the part about the medication not providing relief for three hours. Medical conditions can be so tricky to treat, and I hope you find something that works better for you. Like you said, letting go of expectations and taking it day by day... <3
PS, I love Dani Shapiro! Loved her memoir, Inheritance.
My goodness, thank you for so generously sharing my work here Christine. It’s quite beautiful how we were pulled into each other’s lives and I’m especially grateful that Rene’s story became such a resource and balm for your own experience living with TN. It’s such an excruciating disorder, and even more so with its invisibility. Feeling deeply into the relentlessness of it. The sense you might be cured, only to have episode after recurring episode. Finding solidarity, feeling held and understood in your pain, allowing it to be part of your unfolding, these are all aspects of healing that don’t get talked about enough but are equally necessary to finding peace. Thank you for opening up to share your story so others may also find their way. 💛
Thank YOU, Kimberly, for so many kind words and resources and documentary interviews that help so many feel less alone. What a gift you are to the chronic illness community.
Hi Christine. I am so sorry that you have been dealing with this for so long. I have suffered from two periods of trigeminal neuralgia after bouts of Covid and found some research that suggested a relationship. I also have had CRPS, another pain condition, in my left hand and arm since 2010, which reminds me of TN in some ways. Thankfully, the worst of it has been in remission for a number of years now, but stress or cold or wind can sometimes bring back the more painful symptoms. Pain is such a tricky business. It was helpful to read your account and I hope that better options come for these conditions. Thank you for sharing.
You’re very welcome, Melissa. I’m sorry you’ve struggled in those ways. I hope the coming days are less painful for you. It’s a tricky business, indeed. I’m grateful to be talking about this with people like you who know the journey.
I'm so sorry you're dealing with this intensely painful condition which sounds so extremely difficult - and I'm sure that's a drastic understatement - I hope very very much for effective treatment soon. Are you in touch with Pat and Amy Tomasulo? They are such amazing advocates for the trigeminal neuralgia community.
I am *SO* sorry you have had to cope with this, and I so appreciate this piece. Better understanding is essential. I also am going to find you a cute little accessory for your purse so that you can keep your medication with you at all times!! I do the same… Fibromyalgia is more common, but it affects people differently. I never leave home without my pills, because I never know when I’m going to have a flare up. This includes intense pain and sometimes nausea as well. xoxox
I'm so sorry that you have experienced this horrible pain. The ways our bodies can turn on us is just frightening. I'm glad you seem to have this condition at least somewhat under control, and I hope there will be a cure in the future. I'm waiting for a cure for peripheral neuropathy, the destruction of nerves in one's feet and hands, often as a result of chemo (my case) or diabetes. Aging exacerbates and often brings on this condition. No cures known. Thank you for sharing.
I'm hoping for a cure for your peripheral neuropathy, Linda. You described it all so well - our bodies CAN turn on us. Hope the corner turns for you, and thank you so much for reading.
Dear Christine: In your writing, craft and talent intersect with compassion and transparency for powerful narrative. Well done. You and so many cannot ignore the pain and we must not ignore the issues you raise. Thank you for being an advocate and voice for others.
Gosh, thank you, Andi. I often wish I didn’t have as many health challenges as I do (or the need to process them through writing). But where would I be without writing? Thank you for your kind words.
Oh my gosh, Christine, I am so sorry to hear about this and for what you've gone through. The thing that struck me was the part about the medication not providing relief for three hours. Medical conditions can be so tricky to treat, and I hope you find something that works better for you. Like you said, letting go of expectations and taking it day by day... <3
PS, I love Dani Shapiro! Loved her memoir, Inheritance.
Thank you, Claire. I think of you every day and hope you are doing well.
My goodness, thank you for so generously sharing my work here Christine. It’s quite beautiful how we were pulled into each other’s lives and I’m especially grateful that Rene’s story became such a resource and balm for your own experience living with TN. It’s such an excruciating disorder, and even more so with its invisibility. Feeling deeply into the relentlessness of it. The sense you might be cured, only to have episode after recurring episode. Finding solidarity, feeling held and understood in your pain, allowing it to be part of your unfolding, these are all aspects of healing that don’t get talked about enough but are equally necessary to finding peace. Thank you for opening up to share your story so others may also find their way. 💛
Thank YOU, Kimberly, for so many kind words and resources and documentary interviews that help so many feel less alone. What a gift you are to the chronic illness community.
Hi Christine. I am so sorry that you have been dealing with this for so long. I have suffered from two periods of trigeminal neuralgia after bouts of Covid and found some research that suggested a relationship. I also have had CRPS, another pain condition, in my left hand and arm since 2010, which reminds me of TN in some ways. Thankfully, the worst of it has been in remission for a number of years now, but stress or cold or wind can sometimes bring back the more painful symptoms. Pain is such a tricky business. It was helpful to read your account and I hope that better options come for these conditions. Thank you for sharing.
You’re very welcome, Melissa. I’m sorry you’ve struggled in those ways. I hope the coming days are less painful for you. It’s a tricky business, indeed. I’m grateful to be talking about this with people like you who know the journey.
I'm so sorry you're dealing with this intensely painful condition which sounds so extremely difficult - and I'm sure that's a drastic understatement - I hope very very much for effective treatment soon. Are you in touch with Pat and Amy Tomasulo? They are such amazing advocates for the trigeminal neuralgia community.
I am *SO* sorry you have had to cope with this, and I so appreciate this piece. Better understanding is essential. I also am going to find you a cute little accessory for your purse so that you can keep your medication with you at all times!! I do the same… Fibromyalgia is more common, but it affects people differently. I never leave home without my pills, because I never know when I’m going to have a flare up. This includes intense pain and sometimes nausea as well. xoxox
Hi Christine,
I'm so sorry that you have experienced this horrible pain. The ways our bodies can turn on us is just frightening. I'm glad you seem to have this condition at least somewhat under control, and I hope there will be a cure in the future. I'm waiting for a cure for peripheral neuropathy, the destruction of nerves in one's feet and hands, often as a result of chemo (my case) or diabetes. Aging exacerbates and often brings on this condition. No cures known. Thank you for sharing.
I'm hoping for a cure for your peripheral neuropathy, Linda. You described it all so well - our bodies CAN turn on us. Hope the corner turns for you, and thank you so much for reading.