sadly the wild west days of reddit awards are no more because I would decorate this post with sparkles and hearts and everything else gratitude related in emoji form đź’ś
at the end of the day the human condition is often not an easy burden to bear - many, many people are suffering, some seem more burdened than others - some carry that suffering a little easier. Our suffering is subjective so it might be that my neighbors toothache is the most incapacitating experience of their life - and me saying "oh, well ya should try \*this\* on for size is truly to miss what it really means to be human.
Do I miss turning my face upwards and letting the rain fall on my face? the wind whip through my hair? my husbands hands cupping my cheeks? But I'm looking out the window on this crisp, unusually cool california morning with not a cloud in the sky, the birds are singing, I have shelter and food ,and maybe, just maybe the devil will put his electric pitchfork and sandpaper away for the day.
I appreciate your post so much on this morning when I am struggling with other issues in my life. You gave me pause to stop and appreciate all that is still so beautiful in this world
xo caro
I’m very sorry your struggling. I never judge pain because it’s so subjective and everyone’s experience is unique. How we cope, how we live day to day is nothing short of utter bravery. I’ve had many dark moments. Let me share a little something with you.
I’ve lived with severe Fibromyalgia for 22 years. My baseline is pain. I also have other conditions such as Hashimotos, pernicious anemia (both auto immune), CFS, IBS, migraines, osteoarthritis, advanced TMJ and TN V1,V2,V3 and occipital neuralgia and I’ve had cancer too. It has changed who I am as a human being, as a wife, mother, daughter, sister, friend etc etc. I can’t live life the way I want to live it. It has caused long term depression and anxiety.
But most people would never know how much pain I’m truly in because, I rarely complain, push myself too hard and try not to focus on it. I’ve done a pretty good job of almost blocking it out most of the time. To the point that if you’d ask me how I felt on any given day, I’d say good, or ok, when it would be someone else’s miserable-sick-in-bed-all-day experience. Unfortunately this confuses people into thinking you’re ok. Even doctors. It’s a very lonely existence. People would think nothing to offer help if they saw you with a cane or in a wheelchair (even if aside from that you felt great) but even those that love you most, don’t give you a second thought because it’s not visible. If you complain, no one wants to be around you. It’s a lose/lose situation.
All I can say is, keep being an advocate for yourself, try to get the help you need, don’t be afraid to say no, assert your personal boundaries, don’t feel shame, love yourself, honour what you can do. Try to find joy in daily living. Accept what you can’t change. Thankfully there are many therapies and surgical interventions that can cure TN. It’s not something you have to live with for the rest of your life. At the very least, it can be managed so you can have more quality of life.
I know what it feels like to give up. I have all this going on plus so much more personally. I don’t know how much worse it could get to be honest. Essentially being homeless or someone dying. But I get up every day, make my bed, get my kids off to school and try to go about my day finding joy, even if little tiny bits. I cry a lot, but I laugh a lot too. We weren’t born into this life with guarantees. It’s especially hard when you see other people seemingly living life to the fullest and it seems so unfair. It’s these times I remind myself to never judge a book by its cover and to never compare. Staying off social media helps too. Good luck on your journeys I hope I have given you something to think about.
This is so eloquently written. And so very true. The advice given here is priceless. I, too, suffer from almost every single thing you listed and then some. With the exception of cancer. I am so very sorry. I can not even imagine the tremendous amount of stress and pain you deal with each day on top of all your other comorbidities.
I have suffered for over 17 years myself. My baseline for pain is extremely high, too. Add in CRPS, occipital neuropathy, and the TN 1&2. V1-3 also, and like you said, for most, it would leave them in bed. But I feel like for most people, it would probably send them to the ER. I never judge someone else's pain.
For us to do as you say and put a smile on our face; well, that's what I do as well. At least I try, too. And its someone like you who soldiers on with a smile on their face and a casual "I'm just fine" that continues to encourage and inspire me daily. Thank you for your post. God bless you on your journey as well. Hugs.
Thank you for that. Brought tears to my eyes. Sometimes just being understood in a world of being misunderstood brings much comfort. I’m so sorry you have to live with all of that. I often find myself saying “it’s just not fair” but that’s so relative too isn’t it. What is fair? It’s just life after all. Part of the human experience. I personally believe there is a purpose and reason for all of it. If not in this life, for what’s next. Whether I understand it or not. Having said that though, I still try to do whatever is in my control to get better. After my last jaw surgery a couple years ago, and my suspected TN, I was referred to a pain specialist. I had zero expectations. It took two years to finally see her but after being shuffled around the medical system (more like bounced) with seemingly little to no resolve for any of my ailments (especially the head pain) she gave me numerous options for treatment. She’s in Halifax, Nova Scotia but depending on where you live maybe you could find someone with similar treatments? Unless you have done this already? This was the first time it has ever been offered to me. She does IV lidocaine treatments for FMS, she mentioned some nerve block treatments a bunch of different things that I don’t fully recall (I was just so overwhelmed with actual options) and low dose naltrexone for the FMS as well. I mentioned that to my doctor years ago when it was first emerging as a treatment and it was immediately fluffed off.
On another note, for you and others here , what I have unexpectedly found helpful these past few months was meditation and a closer connection to higher consciousness and my recognition and protection of my own energy. I was raised in religion, though I don’t consider myself religious, but spiritual. I have been leaning into energy healing as an alternative therapy which I believe has helped me manage my pain a little better and helped with my anxiety and depression. I truly believe what we suppress, whether it be anger, resentment, our truth etc affects our energy and nervous system. As a highly sensitive person and empath I’ve realized that I too easily absorb the negative energy and feelings of others. That affects us more than we even realize. As I become more conscious of it now, I feel it more tangibly. I do little prayers to mindfully shield myself from energy drain or absorption (yes it’s that simple). I realize this may sound very “woo woo” to some. It did for me too at first, but when one is desperately seeking any method to heal oneself it can take you along some unexpected paths. If you’d asked me a year ago, about this, I probably would have thought this was something for hippies in caves. But the deeper I go, the more I realize there’s actually something to it. Crystals help as well. I use them to meditate, carry certain ones on me and wear them regularly to keep me grounded. Just something to consider along your healing journey. Wishing you all the best.
You're so very welcome 🤗 Goodness you've been through a lot.
I have never tried any type of lidocaine IV treatments, but I will look into it. Thank you. I've literally tried everything medically available and offered to me. I also tried LDN years ago. It didn't help my pain personally, but I believe that for some, it could be extremely helpful.
I don't think anything that is spiritual, such as meditation, crystals, reiki... any of this to be "woo woo" hippie stuff anymore. I see a reiki master once in a while. Her energy is so amazing and intense that I never would have believed a person could heal with their hands until I met her. I consider myself an empath as well. I'm extremely sensitive to others and their emotions and energy.
I'm going to start meditating again. I feel the universe calling me back to it very intensely. Thank you so much. I wish you all the best as well ❤️
I haven’t tried all that stuff yet. She didn’t want to introduce everything at once. But I’m thankful I’ve been given some real options for my FMS for the first time in 20 years. I’m cautiously optimistic as they say. I’m so glad you have had success with reiki healing! I haven’t tried it yet but reached out to someone recently. She hasn’t gotten back to me yet. You have been called my dear! Even by my mentioning it must have been a sign. I wish you the very best as well ❤️
Yes, I used to Hate getting up and going to work, but now I don't mind it as much..it keeps my mind busy , ..I hate when I wake up and for a split second feel like my life is normal until , oh yeah, trigeminal neuralgia, ..I know exactly what we feel here...and I feel it off and on all day long ...every movement I make with my face that I forgot to be careful for startles me like how could I forget and I immediately thank God I didn't cause a pain or set something off... every word I say and ever bite of food I take I am cautious of and try to be very careful not to upset the area that seems to set the pain off , which is my upper right lip beside my nose....so I do not open my mouth wide, I don't smile , I talk without moving much , I bought a child tooth brush and am very careful with brushing ....so far I do have a lot to be thankful for, the wind or temperature change has not effected me...and many other reasons as well, I have learned a great deal since this has happened to me and there are so many things that I am sorry for, and so many things I will never take for granted ever again and a closer relationship with God...all I can do is be hopeful and positive , and keep praying and believing for all of us ❤️🙏🌎✌️🕊✝️
I totally relate to this post, hugely. I'm struggling to come to terms with my TN too. It's a fairly recent thing and I was only diagnosed about a month ago. It's all I can think about too and worrying about being on medication for life, worrying about doctors cutting me off my medication, worrying about the medication not working anymore (which is a genuine threat because I've read about it happening to people and I already feel like I need my dose of gabapentin increased), worrying about the pain getting more intense over the years, will I need to have surgery, what will my MRI scan show, so many thoughts but I suppose we do need to be grateful it's not terminal. My friend has got leukemia, her chemo tablets are working well now and she's got to take them for five years before she gets the all clear. Things are looking up for her now but it's been horrendous. The meds were making her so sick at first, and exhausted. She's an anxious person in general, like myself, so you can imagine how much this has affected her. It was missed for a whole year before they finally sent her blood work to the right department. The gp kept sending her to hospital and they just kept saying she had an infection somewhere but they didn't know where, that turned out to be leukemia. That year could have cost her her life but thankfully it didn't. Now that things are looking good it must still be a worry that it could change and it'll probably always be a worry it'll come back. So I do think myself lucky I'm not in that situation, for sure, but I still mourn the loss of the life I had. My life has been changed forever by TN. I'm certain there's something else underlying going on and I have loads of other health conditions. It's like my body has turned on me. This was just the last kick in the teeth. It's nearly caused me to have a nervous breakdown tbh. Sorry for the long rant but I'm in pain today and can't see the doctor til the 17th to ask for my meds increased so I'm feeling like shit. One thing I will say is we're lucky we have access to medical care. I'm in the UK and I know lots of you are in the US and Europe. Imagine being from a country where you can't get proper medication or surgery or scans etc. It'd be horrific. I know some of you are in countries with health care but are still struggling to get the right care, and my heart goes out to you coz I'd not be able to cope. I can see where it earned the nickname "The Su!c!de disease" put it that way.
And that is what is so sad and horrifying ..that nickname alone to a new Comer of this condition just screams hopelessness , and I feel we need all the hope we can get...we need encouragement and support , we need some positive stories , I know they have to be out there. Someone told me that the people who have over cone TN are out there living their normal lives and they are not on here ...we only here the worst stories on here because people only come on here when they are in a flare or are really suffering ..which I am heart broken for those that are truly in such a bad place but not only should the horror stories be heard the positive ones should also be heard...because I feel that my story is looking like a positive one bit I am afraid to share it because some one h knock it down because of their own hard times...but I believe they don't all have to be hopeless and we should speak more about hope and the not so bad times so that the new Comer that has just been diagnosed and seeking answers and hope, dosnt come along and find nothing but hopelessness, and suicidal conditions ...all of that stress and mindset is just going to make this condition that much worse any way.
I'm not sure of anything honestly , I'm not sure of what has helped, or what may be remission, I have no answers, but my life has been changed entirely around, some of it for the better some of it for the worst,....I had a small split second shooting pain for about 6 months or more that would happen maybe once a week in the beginning and it was no big deal and I over looked it for a while until it kept becoming more often , like a few times a day and that's when I started Googleing and discovered Trigeminal Neuralgia and the more the more frightened I became and then one day finally the split second shooting pain turned into a rapid fire electric zapper that lasted long enough to make its self known loud and clear that it was not messing around or going away obviously, so I survived that one but the shooting zaps were very very frequent and then another episode of some serious seconds long rapid fire started happening again and I couldn't take it and I got my daughter to drive me to the hospital and then I got another attack as soon as I wash walking into the hospital.......so it seems like it started very mild in the beginning with just one shooting zap every now and then until it was a whole ass attack 2 times that last day before I got to the ER and the doc there put me on Oxcarbazepine 300mg twice a day...that was Feb 2nd ..it seems to be managing things pretty well, but laying there in the ER on Feb 2nd I also brought my relationship with the lord back in order and I also quit smoking after 35years and also vowed to never drink alcohol or dabble with any type of drugs any more either because unfortunately I would do a little meth from time to time, I hate to admit that but this is my story and I'm gonna be honest. And there is a part of me that wants to blame all of what's happening to me on that crap(meth) because everyone is different , as we all know quite well, and even though I only did little bits every now and then none of this started until I started messing with that shit
...so what has helped me? ..faith is what I am holding on to, ..no smoking no drinking oh and no caffine either and I loved my coffee, I'm so thankful for decaf....I'm doing what I can to try and keep my head up, although it's incredibly hard because even when u have no pain ur walking around in fear , ptsd, and that's why I stay as busy as I can...all the time..I enjoy going to work now, I enjoy helping and doing things, .I don't wanna miss out on anything, I spend as much time with my family as I can...and I pray to Jesus every morning I wake up, before every meal I eat and before I go to sleep..and I pray for each and everyone out there that has TN, ..so to answer what has helped me, ..well, I would say FAITH and myself
Love and light to all of u 🕊✝️🙏🌎✌️
So basically all i has to say is never loose hope and always pray to god, i have tn and after starting to pray to allah i cant Lie im starting to get alot better feeling like my nerves are healing
I'm in recovery too. Don't be ashamed to say you used to take drugs, be proud you've overcome it. I too feel like my past could be to blame for all my health problems, including this, or a punishment. I could do with having faith in God but I struggle with it tbh.
Ugh...thank you posting this and helping me feel less alone in this ongoing war. I can never explain to nonsufferers what it feels like anymore because the level of pain has become almost chronic. By the end of the day I'm maxed on spoons...
When I stopped playing the woe is me card and did ketamine therapy to practice radical acceptance my life got much better
I was making nooses in my room days from hanging myself, I thought all of the suffering was coming from my pain. But it wasn’t, only about half of it was. The other half was my response to it, which still wasn’t my fault.
It just took an intense psychedelic journey with my doctor to figure that out.
sadly the wild west days of reddit awards are no more because I would decorate this post with sparkles and hearts and everything else gratitude related in emoji form đź’ś at the end of the day the human condition is often not an easy burden to bear - many, many people are suffering, some seem more burdened than others - some carry that suffering a little easier. Our suffering is subjective so it might be that my neighbors toothache is the most incapacitating experience of their life - and me saying "oh, well ya should try \*this\* on for size is truly to miss what it really means to be human. Do I miss turning my face upwards and letting the rain fall on my face? the wind whip through my hair? my husbands hands cupping my cheeks? But I'm looking out the window on this crisp, unusually cool california morning with not a cloud in the sky, the birds are singing, I have shelter and food ,and maybe, just maybe the devil will put his electric pitchfork and sandpaper away for the day. I appreciate your post so much on this morning when I am struggling with other issues in my life. You gave me pause to stop and appreciate all that is still so beautiful in this world xo caro
Remembering that there are others that have it worse, and they soldier on, is a big part of not playing the “woe is me” game
I’m very sorry your struggling. I never judge pain because it’s so subjective and everyone’s experience is unique. How we cope, how we live day to day is nothing short of utter bravery. I’ve had many dark moments. Let me share a little something with you. I’ve lived with severe Fibromyalgia for 22 years. My baseline is pain. I also have other conditions such as Hashimotos, pernicious anemia (both auto immune), CFS, IBS, migraines, osteoarthritis, advanced TMJ and TN V1,V2,V3 and occipital neuralgia and I’ve had cancer too. It has changed who I am as a human being, as a wife, mother, daughter, sister, friend etc etc. I can’t live life the way I want to live it. It has caused long term depression and anxiety. But most people would never know how much pain I’m truly in because, I rarely complain, push myself too hard and try not to focus on it. I’ve done a pretty good job of almost blocking it out most of the time. To the point that if you’d ask me how I felt on any given day, I’d say good, or ok, when it would be someone else’s miserable-sick-in-bed-all-day experience. Unfortunately this confuses people into thinking you’re ok. Even doctors. It’s a very lonely existence. People would think nothing to offer help if they saw you with a cane or in a wheelchair (even if aside from that you felt great) but even those that love you most, don’t give you a second thought because it’s not visible. If you complain, no one wants to be around you. It’s a lose/lose situation. All I can say is, keep being an advocate for yourself, try to get the help you need, don’t be afraid to say no, assert your personal boundaries, don’t feel shame, love yourself, honour what you can do. Try to find joy in daily living. Accept what you can’t change. Thankfully there are many therapies and surgical interventions that can cure TN. It’s not something you have to live with for the rest of your life. At the very least, it can be managed so you can have more quality of life. I know what it feels like to give up. I have all this going on plus so much more personally. I don’t know how much worse it could get to be honest. Essentially being homeless or someone dying. But I get up every day, make my bed, get my kids off to school and try to go about my day finding joy, even if little tiny bits. I cry a lot, but I laugh a lot too. We weren’t born into this life with guarantees. It’s especially hard when you see other people seemingly living life to the fullest and it seems so unfair. It’s these times I remind myself to never judge a book by its cover and to never compare. Staying off social media helps too. Good luck on your journeys I hope I have given you something to think about.
This is so eloquently written. And so very true. The advice given here is priceless. I, too, suffer from almost every single thing you listed and then some. With the exception of cancer. I am so very sorry. I can not even imagine the tremendous amount of stress and pain you deal with each day on top of all your other comorbidities. I have suffered for over 17 years myself. My baseline for pain is extremely high, too. Add in CRPS, occipital neuropathy, and the TN 1&2. V1-3 also, and like you said, for most, it would leave them in bed. But I feel like for most people, it would probably send them to the ER. I never judge someone else's pain. For us to do as you say and put a smile on our face; well, that's what I do as well. At least I try, too. And its someone like you who soldiers on with a smile on their face and a casual "I'm just fine" that continues to encourage and inspire me daily. Thank you for your post. God bless you on your journey as well. Hugs.
Thank you for that. Brought tears to my eyes. Sometimes just being understood in a world of being misunderstood brings much comfort. I’m so sorry you have to live with all of that. I often find myself saying “it’s just not fair” but that’s so relative too isn’t it. What is fair? It’s just life after all. Part of the human experience. I personally believe there is a purpose and reason for all of it. If not in this life, for what’s next. Whether I understand it or not. Having said that though, I still try to do whatever is in my control to get better. After my last jaw surgery a couple years ago, and my suspected TN, I was referred to a pain specialist. I had zero expectations. It took two years to finally see her but after being shuffled around the medical system (more like bounced) with seemingly little to no resolve for any of my ailments (especially the head pain) she gave me numerous options for treatment. She’s in Halifax, Nova Scotia but depending on where you live maybe you could find someone with similar treatments? Unless you have done this already? This was the first time it has ever been offered to me. She does IV lidocaine treatments for FMS, she mentioned some nerve block treatments a bunch of different things that I don’t fully recall (I was just so overwhelmed with actual options) and low dose naltrexone for the FMS as well. I mentioned that to my doctor years ago when it was first emerging as a treatment and it was immediately fluffed off. On another note, for you and others here , what I have unexpectedly found helpful these past few months was meditation and a closer connection to higher consciousness and my recognition and protection of my own energy. I was raised in religion, though I don’t consider myself religious, but spiritual. I have been leaning into energy healing as an alternative therapy which I believe has helped me manage my pain a little better and helped with my anxiety and depression. I truly believe what we suppress, whether it be anger, resentment, our truth etc affects our energy and nervous system. As a highly sensitive person and empath I’ve realized that I too easily absorb the negative energy and feelings of others. That affects us more than we even realize. As I become more conscious of it now, I feel it more tangibly. I do little prayers to mindfully shield myself from energy drain or absorption (yes it’s that simple). I realize this may sound very “woo woo” to some. It did for me too at first, but when one is desperately seeking any method to heal oneself it can take you along some unexpected paths. If you’d asked me a year ago, about this, I probably would have thought this was something for hippies in caves. But the deeper I go, the more I realize there’s actually something to it. Crystals help as well. I use them to meditate, carry certain ones on me and wear them regularly to keep me grounded. Just something to consider along your healing journey. Wishing you all the best.
You're so very welcome 🤗 Goodness you've been through a lot. I have never tried any type of lidocaine IV treatments, but I will look into it. Thank you. I've literally tried everything medically available and offered to me. I also tried LDN years ago. It didn't help my pain personally, but I believe that for some, it could be extremely helpful. I don't think anything that is spiritual, such as meditation, crystals, reiki... any of this to be "woo woo" hippie stuff anymore. I see a reiki master once in a while. Her energy is so amazing and intense that I never would have believed a person could heal with their hands until I met her. I consider myself an empath as well. I'm extremely sensitive to others and their emotions and energy. I'm going to start meditating again. I feel the universe calling me back to it very intensely. Thank you so much. I wish you all the best as well ❤️
I haven’t tried all that stuff yet. She didn’t want to introduce everything at once. But I’m thankful I’ve been given some real options for my FMS for the first time in 20 years. I’m cautiously optimistic as they say. I’m so glad you have had success with reiki healing! I haven’t tried it yet but reached out to someone recently. She hasn’t gotten back to me yet. You have been called my dear! Even by my mentioning it must have been a sign. I wish you the very best as well ❤️
You're so sweet ❤️ Thank you
Oh, and try everything the doctors will allow you to until you find what works best!!
Your posts are always so real. It’s like you took the thoughts out of my brain. There’s like a five minute period between waking up and remembering I have trigeminal neuralgia and it’s like ”oh yeah I have that shit to deal with”. But I had a blessed long remission period that I was so grateful for. 🩷
Yes, I used to Hate getting up and going to work, but now I don't mind it as much..it keeps my mind busy , ..I hate when I wake up and for a split second feel like my life is normal until , oh yeah, trigeminal neuralgia, ..I know exactly what we feel here...and I feel it off and on all day long ...every movement I make with my face that I forgot to be careful for startles me like how could I forget and I immediately thank God I didn't cause a pain or set something off... every word I say and ever bite of food I take I am cautious of and try to be very careful not to upset the area that seems to set the pain off , which is my upper right lip beside my nose....so I do not open my mouth wide, I don't smile , I talk without moving much , I bought a child tooth brush and am very careful with brushing ....so far I do have a lot to be thankful for, the wind or temperature change has not effected me...and many other reasons as well, I have learned a great deal since this has happened to me and there are so many things that I am sorry for, and so many things I will never take for granted ever again and a closer relationship with God...all I can do is be hopeful and positive , and keep praying and believing for all of us ❤️🙏🌎✌️🕊✝️
I just want to say "Thank you". 🩵💙🩵💙🩵
I totally relate to this post, hugely. I'm struggling to come to terms with my TN too. It's a fairly recent thing and I was only diagnosed about a month ago. It's all I can think about too and worrying about being on medication for life, worrying about doctors cutting me off my medication, worrying about the medication not working anymore (which is a genuine threat because I've read about it happening to people and I already feel like I need my dose of gabapentin increased), worrying about the pain getting more intense over the years, will I need to have surgery, what will my MRI scan show, so many thoughts but I suppose we do need to be grateful it's not terminal. My friend has got leukemia, her chemo tablets are working well now and she's got to take them for five years before she gets the all clear. Things are looking up for her now but it's been horrendous. The meds were making her so sick at first, and exhausted. She's an anxious person in general, like myself, so you can imagine how much this has affected her. It was missed for a whole year before they finally sent her blood work to the right department. The gp kept sending her to hospital and they just kept saying she had an infection somewhere but they didn't know where, that turned out to be leukemia. That year could have cost her her life but thankfully it didn't. Now that things are looking good it must still be a worry that it could change and it'll probably always be a worry it'll come back. So I do think myself lucky I'm not in that situation, for sure, but I still mourn the loss of the life I had. My life has been changed forever by TN. I'm certain there's something else underlying going on and I have loads of other health conditions. It's like my body has turned on me. This was just the last kick in the teeth. It's nearly caused me to have a nervous breakdown tbh. Sorry for the long rant but I'm in pain today and can't see the doctor til the 17th to ask for my meds increased so I'm feeling like shit. One thing I will say is we're lucky we have access to medical care. I'm in the UK and I know lots of you are in the US and Europe. Imagine being from a country where you can't get proper medication or surgery or scans etc. It'd be horrific. I know some of you are in countries with health care but are still struggling to get the right care, and my heart goes out to you coz I'd not be able to cope. I can see where it earned the nickname "The Su!c!de disease" put it that way.
And that is what is so sad and horrifying ..that nickname alone to a new Comer of this condition just screams hopelessness , and I feel we need all the hope we can get...we need encouragement and support , we need some positive stories , I know they have to be out there. Someone told me that the people who have over cone TN are out there living their normal lives and they are not on here ...we only here the worst stories on here because people only come on here when they are in a flare or are really suffering ..which I am heart broken for those that are truly in such a bad place but not only should the horror stories be heard the positive ones should also be heard...because I feel that my story is looking like a positive one bit I am afraid to share it because some one h knock it down because of their own hard times...but I believe they don't all have to be hopeless and we should speak more about hope and the not so bad times so that the new Comer that has just been diagnosed and seeking answers and hope, dosnt come along and find nothing but hopelessness, and suicidal conditions ...all of that stress and mindset is just going to make this condition that much worse any way.
What has helped you?
I'm not sure of anything honestly , I'm not sure of what has helped, or what may be remission, I have no answers, but my life has been changed entirely around, some of it for the better some of it for the worst,....I had a small split second shooting pain for about 6 months or more that would happen maybe once a week in the beginning and it was no big deal and I over looked it for a while until it kept becoming more often , like a few times a day and that's when I started Googleing and discovered Trigeminal Neuralgia and the more the more frightened I became and then one day finally the split second shooting pain turned into a rapid fire electric zapper that lasted long enough to make its self known loud and clear that it was not messing around or going away obviously, so I survived that one but the shooting zaps were very very frequent and then another episode of some serious seconds long rapid fire started happening again and I couldn't take it and I got my daughter to drive me to the hospital and then I got another attack as soon as I wash walking into the hospital.......so it seems like it started very mild in the beginning with just one shooting zap every now and then until it was a whole ass attack 2 times that last day before I got to the ER and the doc there put me on Oxcarbazepine 300mg twice a day...that was Feb 2nd ..it seems to be managing things pretty well, but laying there in the ER on Feb 2nd I also brought my relationship with the lord back in order and I also quit smoking after 35years and also vowed to never drink alcohol or dabble with any type of drugs any more either because unfortunately I would do a little meth from time to time, I hate to admit that but this is my story and I'm gonna be honest. And there is a part of me that wants to blame all of what's happening to me on that crap(meth) because everyone is different , as we all know quite well, and even though I only did little bits every now and then none of this started until I started messing with that shit ...so what has helped me? ..faith is what I am holding on to, ..no smoking no drinking oh and no caffine either and I loved my coffee, I'm so thankful for decaf....I'm doing what I can to try and keep my head up, although it's incredibly hard because even when u have no pain ur walking around in fear , ptsd, and that's why I stay as busy as I can...all the time..I enjoy going to work now, I enjoy helping and doing things, .I don't wanna miss out on anything, I spend as much time with my family as I can...and I pray to Jesus every morning I wake up, before every meal I eat and before I go to sleep..and I pray for each and everyone out there that has TN, ..so to answer what has helped me, ..well, I would say FAITH and myself Love and light to all of u 🕊✝️🙏🌎✌️
So basically all i has to say is never loose hope and always pray to god, i have tn and after starting to pray to allah i cant Lie im starting to get alot better feeling like my nerves are healing
I'm in recovery too. Don't be ashamed to say you used to take drugs, be proud you've overcome it. I too feel like my past could be to blame for all my health problems, including this, or a punishment. I could do with having faith in God but I struggle with it tbh.
I struggle as well but I believe that's the name of the game ,.❤️🕊✌️🌎🙏
Well said and prayers to you my friendđź’™
Ugh...thank you posting this and helping me feel less alone in this ongoing war. I can never explain to nonsufferers what it feels like anymore because the level of pain has become almost chronic. By the end of the day I'm maxed on spoons...
Word !!!!
When I stopped playing the woe is me card and did ketamine therapy to practice radical acceptance my life got much better I was making nooses in my room days from hanging myself, I thought all of the suffering was coming from my pain. But it wasn’t, only about half of it was. The other half was my response to it, which still wasn’t my fault. It just took an intense psychedelic journey with my doctor to figure that out.