When it rains it pours. My poor tired soul, I see you. Although, I can't offer any words you haven't heard before I can just offer this... if you're in America please dial 988.
With love and awaiting a new post from you in the future. ❤️
Thank you so much! Unfortunately 988 has always left me feeling more alone and empty but if things don’t start improving here soon I will definitely reach out to them again.
Do song lyrics trigger you if you really really relate?? I listen to Citizen Soilder when I feel like crap. The album ICU has made cry and pick myself up. It's a heavy trigger warning though. I can understand if it's not for everyone.
I don’t have many words to say because I am in a similar situation. I had to hold on to my faith. I’m not sure if you are religious or spiritual whatever it is trust in it pray. Don’t overwhelm yourself with everything just handle things bit by bit. I know collections is nothing that any of us want but handle the healthy conditions first. See if you can apply for any assistance financially and health wise and mentally. Hang in there
You're not alone friend. I'm luckily not in the middle of a bad flare up at the moment but I'm having huge troubles with mood swings and generally coping on my own. I'm desperately hoping I can get something useful when I call my GP tomorrow.
Stay strong, if anything it can only get better from here. I'm sending a big hug and good vibes. You're always free to vent here, we're all in the same club and I know that for me, just knowing someone is prepared to listen can be a huge help. I don't know your location but please make use of any support groups you can (Samaritans have been a lifesaver for me, literally).
I'm a stubborn old soul and if this is the battle I have to fight, I'll fight it and seeing as I have a little extra energy I'll try to send some your way too :)
<3
I've been there. It really does get better. It's overwhelming when life comes at you like this, so you gotta break it down into bite size pieces. I'm a project manager in my professional life, and it's my coping mechanism in my personal life, too.
Start with the list you gave above, and break it down to what can you effect? Cause some of it is out of your hands, right?
Take your new list and list out what you CAN do. Then start doing one thing at a time. It helps me feel like I have the power.
Please reach out to your PCP and let them know you're feeling this way. Please keep fighting, OP 💕
It’s so hard to think life can get better. It’s been getting worse with new things every day for five years now (TN pain for a bit over a year). I’m doing everything I can right now to just stay alive. Thank you for your suggestions! When I have more in me I will try them out.
Thanks so much. It’s been a tough weekend so far (rainy/windy weather) and I have to work the rest of the weekend but trying to do exactly as you said. Breathe and find some self love. I appreciate you checking in 💜 it means the world to mw
If you can tolerate a warm compress, add a couple drops of lavender oil. That's been super helpful for anxiety and tension for me. Reach out if you need to talk 💜
Don't give up. Reach out to family or friend and ask for help! We all can feel very alone with all of this, but I hope you know you aren't.
Sending love and hugs. One day at a time and I hope the next day gets a bit better!
I have never felt this isolated and alone. Most of my friends have just given up on me. When I reach out to anyone they can’t handle my negativity so end up alone again. Thank you for your kind words!! I need any positivity I can get 💜💜
I know what you mean. I choose my sharing of negativity for those really unbearable days so as not to become a Debbie Downer or broken record.
I have kids, and I saw what it was doing to them to see me or hear me so focused on the pain or trying to avoid it.
Thankfully, a friend of mine heard me out and suggested I try to focus on the good to forget the bad. Believe it or not, I feel better doing this. I think that I am stronger than I thought I was. The pain sucks, and sometimes I can't fake it or be "normal", but for those days that I push through and try not to focus on the pain, it leads to another,"good" day. Which for me, any day that isn't fully spent on the couch or in bed, miserably trying to make it through another day. It also allows me to avoid the horrible feelings that come from seeing my friends or family go numb or get uncomfortable because they cannot understand and don't want to hear it, because there isn't much they can do.
Much love, friend!
I have four cats still haha. But it’s so hard to not have my little sassy comedic relief around when I’m trapped inside all day. I can’t handle/shouldn’t add another pet but I so desperately want a kitten
I wouldn’t be here if I didn’t have my dogs. When it has been at its worst my family no longer was a good enough reason to live, but I didn’t figure anyone would take care of my fur babies as good as I could.
That’s exactly the way I feel! My mom has been my lifeline for so long, but now I feel she’d be better off without having to worry about me. But I know my family would immediately rehome my cats and that thought destroys me. Naturally, that makes losing one of them that much harder because they are me reason to keep going.
It sucks ass they don’t live longer. My lap pug only made it to 10, oral cancer, luckily I guess I have his brother still. He’s declining fast now though. I adopted a little girl pug so I won’t be without a dog,universe willing,in the near future.
It’s a slow death I guess, I’m telling myself every day that I won’t let him keep going when he starts getting stuck by walls or constant circling and is miserable. Very difficult but he deserves better than being confused and unhappy. Ty hugs to you for your lost baby. I’m glad you have more that love you. It is too bad cats haven’t developed the facial muscles dogs have. Get a kitten if you can afford one. I probably will when my boy goes so that little girl isn’t too lonely.
I also have TN & I can relate to that pain. I’ve had it for about 21/2 years. It got worse as time went on.
At first they thought it was my teeth, then TMJ. I was finally diagnosed by my doctor. My neurologist prescribed Carbamazepine but in the meantime I was looking to see if there were any
thing I could take besides the Carbamazepine. I came across something called Nervive & I read about vitamins & minerals like Magnesium. I started taking these & in 2 weeks after building up
In my system it actually started working. I still took
the medication but it didn’t really agree with me. I
had to have pacemaker surgery. My TN had pretty much stopped acting up & I had so many medications to take, I stopped taking the nerve
Supplement, I think I must’ve forgotten how bad
TN hurts. It came back strong & I had to take the medication to stop them. I was going to my doctor
appt. & hoping there was something that could be done to stop this pain. I decided to try the vitamin
therapy again. I was in so much pain. I just figured
It can’t help me at this point. I’d been off it for a long time. I started taking the nerve repairing
supplement & magnesium. I had to take it for approximately 2weeks along with my medication.
Believe it or not it worked again & Im not in constant pain. This is probably a temporary fix
I still need to find out what’s going on in my
brain so I don’t have to go thru this awful awful
Pain. I don’t know if would help anyone else but
it’s priceless to me. I’m getting an MRI to see if it shows the problem causing the pain. I’m not sure
if could help others but it helped me. Remember
it takes a while to build up in your system. Keep
taking your prescription medication. Give it a try.
Cindy
At my lowest moments a friend gave me the cutest little ceramic pot that had and Engraving " train your mind to see the good in everything." It seriously pissed me off to the point of wanting to smash it to pieces. Eventually I decided to think of one thing I could "put in it" that I was thankful for and I put my kids in there everyday because that was the only thing I could even think of. Then I started thinking of things like it was sunshiny today or I saw a pretty yellow flower, i have amazing siblings. Over time I was able to see things in the world that I truly was thankful for and trained myself to let them out weight all the crap that was dragging me down. It was not easy and it did take a long time. I have a huge family and a fantastic network of friends and I utilized all of it! And eventually got through it and I still lean on them when I need them. Stay strong and look in all directions at the tiniest of things and you will see that there are still good things and solid reasons to find happiness. Peace, love, prayers and happiness my friend.
Thank you so much! I’ve had so many people tell me to find the positives and it feels beyond impossible. I’ve been trying to hold on to “glimmers” (opposite of triggers) for a few days now but it’s not helping a ton. I will keep trying and see if I can find hope in there 💜💜
It took me a long time. I also had fantastic family support. Have faith, baby steps, only think of "today, I can make it this day." Worry about tomorrow, tomorrow 💙
I love that. Thank you! My mom and nieces and nephews have been great! My siblings/in laws not so much. Been a lot of family tension because I’m hardly able to care for myself and they seem to think judgment will help more than support? I don’t know. Maybe one day they’ll come around. For now I’m grateful for my mom and her care 💜
The pain is so beyond anything most people fathom so, unfortunately, some assume we're exaggerating, whining and being lazy. Thank God for Mama's! They always take care of us😊
I'm so sorry. And I know saying that is useless. I know telling you to find resources in your remissions -if-you-have-them is useless, because we're too fucking knackered and too scared to speak cos it hurts. That's why I write screeds on the internut, because normal interaction is like taking a hammer to the head. Fortunately I'm in a country with a social safety net but I feel like an absolute bum - I hung on to "normal" life for so long but I couldn't do it either. It's really, REALLY ok to feel like this, you're not alone and we're all trapped with ever-smaller lives centred around this lunacy.
Please do try and access assistance tho, in every form its available from financial to housing to charity. Money goes a lot further when it's carefully planned, and you may find you can free up in unexpected ways - for instance, I don't drive so that's a huge outgoing avoided, but only you can weigh up everything relating to your circs and your particular version of this particular circle of hell. Similarly, we put a lot of energy into maintaining "the Western dream" but it can be freeing in a way to get off the escalator.
And you are much stronger than you think. Anybody who can withstand this is an absolute beast - poking the TN ganglion is how the military cops here take down brawling squaddies, it's that instant a response and so massive it takes huge, trained men out at the knees. This is the type of diagnosis that is life-changing and it really takes time to understand the enormity of it, in the way we'd stop and take pause at a cancer diagnosis. During attacks I just focus on making it alive through the next second and so far, the seconds have built up. I'm still here (but no guarantees when the bomb next goes off. In about two days, probably 😫)
These are massive, fundamentally life-changing issues and we pile the pressure on ourselves but I'm not sure I could even have answered "why?" when it was obvious, looking back, that I was hanging on because I didn't know what else to do. Please, give yourself time and grace , because this is huge. Just because it isn't well-known doesn't make it any less so. I wish you peace, friend.
I so appreciate your kind and understanding words. I’ve feel so alone. The pain from loneliness is almost comparable to the TN pain. I’m really grateful for the internet so I can have some connection to the outside world and some distraction. And hear from people who truly understand the horror and terror that is TN💜💜💜
I've been there. It's dark but the chance of a better life is worth it.life is still very hard but it's now one worth being alive for. Last winter I was in and out of the hospital and missed so much work now I'm managing pain and new pain better than I ever had. It's worth the chance of a decent life. Got a girl friend and a few dogs now
Good for you for the progress! The thought of trying to get out and meet someone, let alone starting a relationship just seems like such a huge mountain for me. I'm getting older and I feel like I've just about given up with that now, unless I miraculously bump into someone who would accept me with my flaws.
Sending big hugs to you. I haven't been diagnosed yet and Dr's keep brushing me off saying nothings wrong. I was diagnosed with fibromalagia in 2011 but I have to wonder if Dr's have missed something. I'm getting blood work on the 26th to check my parathyroid because I seem to have a lot of symptoms. I'm just tired of being tired for no reason.
Hoping things get better for you.
Everyone in my house including my dogs have severe multiple medical issues. I feel like tossing the towel in some days but I hang on for my animals and otherhalf.
I live with my mom (sucks because I’m 27 and want to be on my own) and feel like I’m just a burden to her. But my cats are keeping me going. I spend 80% of my time alone and would definitely be long gone if it weren’t for the company of my pets. I’m so glad you have that with your dogs too because at least they’ve got us this far.
Hi twin ☺️ two crohn’s flares, PE in April, medication induced lupus, postponed hysterectomy put on Orilissa, major TN flare with facial paralysis and a small brain tumor with bacterial sinusitis/cellulitis 🥳🥳🥳🥳 ya know….living the dream 😇 we are warriors and survivors we can do this 😅
I hate all of that and am so heartbroken for you. It kills me knowing how much pain there is in the world. You are truly amazing 💜💜💜 thanks for the love and support! I wish you all the best and as much comfort that is possible in all you’re dealing with. You are so strong!!
i dont have any helpful advice because i've been there and i dont even have my own advice lol but sending you virtual hugs and love from one to another 🩷
Try singing at the top of your lungs too. Do it until you're tired of it. Sometimes that can feel like you had a good cry. But it's more fun than crying.
"You can only go as far as you can see, but once you get there you'll see farther." - Unknown.
One step at a time.
Thank you!! Sometimes singing is a trigger for me (really sucks because I love singing) but on a better day I will give it a try! I’m loving that quote a lot 💜
I’ve been diagnosed with Trigeminal Neuralgia since 2020. I had to go through many doctors and surgeons to finally get one doctor to agree to do a radio frequency rhizotomy, my TN is bilateral so i had it done on both sides. Right side was successful but the left side wasn’t and left me completely numb on my left side. We ended up discussing next steps and the next step was the MVD surgery. I went in May 16 2022 and underwent brain surgery, came home May 27, 2022 after being in the ICU for a week. It was semi successful, i do still get flare ups but not as bad. KEEP FIGHTING. I PROMISE IT GETS BETTER. YOU CAN NOT LET THIS TAKE OVER YOUR LIFE. I KNOW ITS HARD BUT YOU CAN GET THROUGH IT!!!
No problem! That’s exactly what I did before the MVD, it is so hard to deal with and the pain is excruciating but there’s light at the end of the tunnel. Like I said I do still get flare ups but nowhere near as bad as it was! I was ready to give up, but advocate for yourself and don’t take no for an answer. What side is your TN on? Have you gotten in with a neurosurgeon?
I am in Canada. My neurologist here we will not discuss the MVD surgery until I have tried whatever medications are available. And there are lots. That sucks because of the side effects. I think he thinks, well, I know he thinks that it is better to deal with the side effects than pain but that isn’t a good quality of life. I’m pushing for the surgery. My TN, was controlled for two years, until 2 1/2 months ago when the med, carbamazepine, quit working. I’ve been on three different drugs now so far and none of them are working. Horrible.
Keep trying! Keep advocating for yourself! I’m in the US in Virginia and it took me quite a few years to get any surgical options. There are a lot of complications that go with the MVD surgery, but in the end to me it was all worth it. I had a CSF leak and was temporarily paralyzed for 8 hours due to a lumbar drain, which led me being in the ICU for over a week. I do still get pain but not as bad. I’m currently still taking Lyrica and gabapentin.
Find your reason to live and hold onto that for dear life until you can make yourself the number one reason because you deserve it. I’m sorry you are struggling a lot. All I can say is we haven’t tried everything. There is always hope. Research, taking care of your mental, self-compassion. Breath, meditate, find joy in the small little things, and accomplishments that the average person takes for granted. Pace yourself and remember to take things one hour at a time. The little things eventually turn into big things with patience and pacing. This is your life so do what you can to take care of it no matter what others think or feel. Remember we are all different so everyone works differently. Sometimes we get carried away with Shame or guilt for being different, and having to navigate life in a different way, but all we can do is protect and nurture ourselves cause no one else will do it for us. You are not alone. And you deserve to have peace. Even if it’s a little bit. So give yourself a lot of grace, And enjoy the minutes you are pain free you deserve it. Stay present. And don’t be afraid to ask for help. Whether it’s therapy, antidepressants, or If you need to get on government assistance programs. It’s designed for people who are really struggling. And there is no shame in reaching out. It actually makes you courages. Take care of yourself ❤️
Thank you so much for the uplifting words! It’s so hard to remember these things when life feels unbearable with no breaks. I will revisit your words often to remember to give myself the grace and compassion I need
I’d dead if it wasn’t for my dilaudid injection. Every 4 hours. Life is back to normal, and I promise you I was in a worst place than you… it’s hard to even think about it.
I was face down in my bed tying nooses around my throat with no hope. Now I’m dependent on dilaudid and need it regularly but at least I’m happy again. Good luck with whatever you do
Keep dilaudid as last resort,
Dilaudid! I have been on it… including for nearly 2 months after I was recovering from a broken hip. Full surgery and four pins. I was also given too much ketamine coming out of the surgery and went down the K hole. I knew about ketamine, but had never heard of the K hole. I spent the first week in bed obsessively, watching YouTube videos of people who had gone down the hole. Freaking nightmare at the time. Anyway, I was sent home with a two month prescription of Dilaudid. 20 mg every four hours. They monitored that very very closely. I’m sure that my neurologist would give it to me for this.
I stopped all the tn meds. It didn’t help enough and it made me not able to function in my masters program
Maybe one day when I’m not in extremely intensive schooling I’ll be able to go back on one of them. But for now I just can’t
Lyrica is the one I have on me at my house though
I was on carbamazepine when I got diagnosed and it worked for two years, now it’s not. Now I’m on even more carbamazepine and Lyrica. I’d rather be like you and take pain medication than these drugs. The Lyrica is giving me ugly side effects. Good for you.
When it rains it pours. My poor tired soul, I see you. Although, I can't offer any words you haven't heard before I can just offer this... if you're in America please dial 988. With love and awaiting a new post from you in the future. ❤️
Thank you so much! Unfortunately 988 has always left me feeling more alone and empty but if things don’t start improving here soon I will definitely reach out to them again.
Do song lyrics trigger you if you really really relate?? I listen to Citizen Soilder when I feel like crap. The album ICU has made cry and pick myself up. It's a heavy trigger warning though. I can understand if it's not for everyone.
Music doesn’t trigger me quite as much as movie/tv plots. I thing relating to lyrics is really cathartic for me. I’ll give it a try!!
Two lines into “I’m Not Okay” and I’m hooked. Thank you so much for the suggestion
I'm so glad this was helpful!! 🥰🥰🥰 This makes me super happy there was something available to you.
I don’t have many words to say because I am in a similar situation. I had to hold on to my faith. I’m not sure if you are religious or spiritual whatever it is trust in it pray. Don’t overwhelm yourself with everything just handle things bit by bit. I know collections is nothing that any of us want but handle the healthy conditions first. See if you can apply for any assistance financially and health wise and mentally. Hang in there
I was raised very religious. I’ve found it very triggering for me to hang on to those beliefs but am so glad to hear when it does work for others 💜
You're not alone friend. I'm luckily not in the middle of a bad flare up at the moment but I'm having huge troubles with mood swings and generally coping on my own. I'm desperately hoping I can get something useful when I call my GP tomorrow. Stay strong, if anything it can only get better from here. I'm sending a big hug and good vibes. You're always free to vent here, we're all in the same club and I know that for me, just knowing someone is prepared to listen can be a huge help. I don't know your location but please make use of any support groups you can (Samaritans have been a lifesaver for me, literally). I'm a stubborn old soul and if this is the battle I have to fight, I'll fight it and seeing as I have a little extra energy I'll try to send some your way too :) <3
💜💜 thank you for your kindness and empathy!
I've been there. It really does get better. It's overwhelming when life comes at you like this, so you gotta break it down into bite size pieces. I'm a project manager in my professional life, and it's my coping mechanism in my personal life, too. Start with the list you gave above, and break it down to what can you effect? Cause some of it is out of your hands, right? Take your new list and list out what you CAN do. Then start doing one thing at a time. It helps me feel like I have the power. Please reach out to your PCP and let them know you're feeling this way. Please keep fighting, OP 💕
It’s so hard to think life can get better. It’s been getting worse with new things every day for five years now (TN pain for a bit over a year). I’m doing everything I can right now to just stay alive. Thank you for your suggestions! When I have more in me I will try them out.
Thinking of you, OP. Hoping today feels a little less heavy.
💜💜
Checking in - happy Friday, OP. Hope you can take an hour for yourself this weekend to just breathe and give yourself some love.
Thanks so much. It’s been a tough weekend so far (rainy/windy weather) and I have to work the rest of the weekend but trying to do exactly as you said. Breathe and find some self love. I appreciate you checking in 💜 it means the world to mw
If you can tolerate a warm compress, add a couple drops of lavender oil. That's been super helpful for anxiety and tension for me. Reach out if you need to talk 💜
That’s a great suggestion! Thank you
Hope your week is going alright, OP!
You are so sweet! I’m working hard to cling onto the good. I hope you’re having an okay week too!
Don't give up. Reach out to family or friend and ask for help! We all can feel very alone with all of this, but I hope you know you aren't. Sending love and hugs. One day at a time and I hope the next day gets a bit better!
I have never felt this isolated and alone. Most of my friends have just given up on me. When I reach out to anyone they can’t handle my negativity so end up alone again. Thank you for your kind words!! I need any positivity I can get 💜💜
I know what you mean. I choose my sharing of negativity for those really unbearable days so as not to become a Debbie Downer or broken record. I have kids, and I saw what it was doing to them to see me or hear me so focused on the pain or trying to avoid it. Thankfully, a friend of mine heard me out and suggested I try to focus on the good to forget the bad. Believe it or not, I feel better doing this. I think that I am stronger than I thought I was. The pain sucks, and sometimes I can't fake it or be "normal", but for those days that I push through and try not to focus on the pain, it leads to another,"good" day. Which for me, any day that isn't fully spent on the couch or in bed, miserably trying to make it through another day. It also allows me to avoid the horrible feelings that come from seeing my friends or family go numb or get uncomfortable because they cannot understand and don't want to hear it, because there isn't much they can do. Much love, friend!
💜💜
Do you have other cats yet?
I have four cats still haha. But it’s so hard to not have my little sassy comedic relief around when I’m trapped inside all day. I can’t handle/shouldn’t add another pet but I so desperately want a kitten
I wouldn’t be here if I didn’t have my dogs. When it has been at its worst my family no longer was a good enough reason to live, but I didn’t figure anyone would take care of my fur babies as good as I could.
That’s exactly the way I feel! My mom has been my lifeline for so long, but now I feel she’d be better off without having to worry about me. But I know my family would immediately rehome my cats and that thought destroys me. Naturally, that makes losing one of them that much harder because they are me reason to keep going.
It sucks ass they don’t live longer. My lap pug only made it to 10, oral cancer, luckily I guess I have his brother still. He’s declining fast now though. I adopted a little girl pug so I won’t be without a dog,universe willing,in the near future.
It really does hurt so bad to lose them. I’m so sorry to hear your pup is declining 🥺
He has ccd so his mind will be gone before his body quits unfortunately
🥺🥺 sending you so much love! That is the definition of Hell for me, and I assume for you too
It’s a slow death I guess, I’m telling myself every day that I won’t let him keep going when he starts getting stuck by walls or constant circling and is miserable. Very difficult but he deserves better than being confused and unhappy. Ty hugs to you for your lost baby. I’m glad you have more that love you. It is too bad cats haven’t developed the facial muscles dogs have. Get a kitten if you can afford one. I probably will when my boy goes so that little girl isn’t too lonely.
I also have TN & I can relate to that pain. I’ve had it for about 21/2 years. It got worse as time went on. At first they thought it was my teeth, then TMJ. I was finally diagnosed by my doctor. My neurologist prescribed Carbamazepine but in the meantime I was looking to see if there were any thing I could take besides the Carbamazepine. I came across something called Nervive & I read about vitamins & minerals like Magnesium. I started taking these & in 2 weeks after building up In my system it actually started working. I still took the medication but it didn’t really agree with me. I had to have pacemaker surgery. My TN had pretty much stopped acting up & I had so many medications to take, I stopped taking the nerve Supplement, I think I must’ve forgotten how bad TN hurts. It came back strong & I had to take the medication to stop them. I was going to my doctor appt. & hoping there was something that could be done to stop this pain. I decided to try the vitamin therapy again. I was in so much pain. I just figured It can’t help me at this point. I’d been off it for a long time. I started taking the nerve repairing supplement & magnesium. I had to take it for approximately 2weeks along with my medication. Believe it or not it worked again & Im not in constant pain. This is probably a temporary fix I still need to find out what’s going on in my brain so I don’t have to go thru this awful awful Pain. I don’t know if would help anyone else but it’s priceless to me. I’m getting an MRI to see if it shows the problem causing the pain. I’m not sure if could help others but it helped me. Remember it takes a while to build up in your system. Keep taking your prescription medication. Give it a try. Cindy
Thank you for the suggestion!! I will do some research
At my lowest moments a friend gave me the cutest little ceramic pot that had and Engraving " train your mind to see the good in everything." It seriously pissed me off to the point of wanting to smash it to pieces. Eventually I decided to think of one thing I could "put in it" that I was thankful for and I put my kids in there everyday because that was the only thing I could even think of. Then I started thinking of things like it was sunshiny today or I saw a pretty yellow flower, i have amazing siblings. Over time I was able to see things in the world that I truly was thankful for and trained myself to let them out weight all the crap that was dragging me down. It was not easy and it did take a long time. I have a huge family and a fantastic network of friends and I utilized all of it! And eventually got through it and I still lean on them when I need them. Stay strong and look in all directions at the tiniest of things and you will see that there are still good things and solid reasons to find happiness. Peace, love, prayers and happiness my friend.
Thank you so much! I’ve had so many people tell me to find the positives and it feels beyond impossible. I’ve been trying to hold on to “glimmers” (opposite of triggers) for a few days now but it’s not helping a ton. I will keep trying and see if I can find hope in there 💜💜
It took me a long time. I also had fantastic family support. Have faith, baby steps, only think of "today, I can make it this day." Worry about tomorrow, tomorrow 💙
I love that. Thank you! My mom and nieces and nephews have been great! My siblings/in laws not so much. Been a lot of family tension because I’m hardly able to care for myself and they seem to think judgment will help more than support? I don’t know. Maybe one day they’ll come around. For now I’m grateful for my mom and her care 💜
The pain is so beyond anything most people fathom so, unfortunately, some assume we're exaggerating, whining and being lazy. Thank God for Mama's! They always take care of us😊
So very true. With her I wouldn’t be able to keep my head above water
I'm so sorry. And I know saying that is useless. I know telling you to find resources in your remissions -if-you-have-them is useless, because we're too fucking knackered and too scared to speak cos it hurts. That's why I write screeds on the internut, because normal interaction is like taking a hammer to the head. Fortunately I'm in a country with a social safety net but I feel like an absolute bum - I hung on to "normal" life for so long but I couldn't do it either. It's really, REALLY ok to feel like this, you're not alone and we're all trapped with ever-smaller lives centred around this lunacy. Please do try and access assistance tho, in every form its available from financial to housing to charity. Money goes a lot further when it's carefully planned, and you may find you can free up in unexpected ways - for instance, I don't drive so that's a huge outgoing avoided, but only you can weigh up everything relating to your circs and your particular version of this particular circle of hell. Similarly, we put a lot of energy into maintaining "the Western dream" but it can be freeing in a way to get off the escalator. And you are much stronger than you think. Anybody who can withstand this is an absolute beast - poking the TN ganglion is how the military cops here take down brawling squaddies, it's that instant a response and so massive it takes huge, trained men out at the knees. This is the type of diagnosis that is life-changing and it really takes time to understand the enormity of it, in the way we'd stop and take pause at a cancer diagnosis. During attacks I just focus on making it alive through the next second and so far, the seconds have built up. I'm still here (but no guarantees when the bomb next goes off. In about two days, probably 😫) These are massive, fundamentally life-changing issues and we pile the pressure on ourselves but I'm not sure I could even have answered "why?" when it was obvious, looking back, that I was hanging on because I didn't know what else to do. Please, give yourself time and grace , because this is huge. Just because it isn't well-known doesn't make it any less so. I wish you peace, friend.
I so appreciate your kind and understanding words. I’ve feel so alone. The pain from loneliness is almost comparable to the TN pain. I’m really grateful for the internet so I can have some connection to the outside world and some distraction. And hear from people who truly understand the horror and terror that is TN💜💜💜
I've been there. It's dark but the chance of a better life is worth it.life is still very hard but it's now one worth being alive for. Last winter I was in and out of the hospital and missed so much work now I'm managing pain and new pain better than I ever had. It's worth the chance of a decent life. Got a girl friend and a few dogs now
Good for you for the progress! The thought of trying to get out and meet someone, let alone starting a relationship just seems like such a huge mountain for me. I'm getting older and I feel like I've just about given up with that now, unless I miraculously bump into someone who would accept me with my flaws.
That’s how I’m feeling as well. Just so overwhelmed and hopeless at the idea. But I’m so glad others are able to find that
Sending big hugs to you. I haven't been diagnosed yet and Dr's keep brushing me off saying nothings wrong. I was diagnosed with fibromalagia in 2011 but I have to wonder if Dr's have missed something. I'm getting blood work on the 26th to check my parathyroid because I seem to have a lot of symptoms. I'm just tired of being tired for no reason. Hoping things get better for you.
I’m so sorry. It’s so cruel how much these things add up. I hope things get better for you too
Everyone in my house including my dogs have severe multiple medical issues. I feel like tossing the towel in some days but I hang on for my animals and otherhalf.
I live with my mom (sucks because I’m 27 and want to be on my own) and feel like I’m just a burden to her. But my cats are keeping me going. I spend 80% of my time alone and would definitely be long gone if it weren’t for the company of my pets. I’m so glad you have that with your dogs too because at least they’ve got us this far.
Had an awful year too but as long as the TN is controlled I feel like I can go on. Hope things get better for you.
💜💜💜
Hi twin ☺️ two crohn’s flares, PE in April, medication induced lupus, postponed hysterectomy put on Orilissa, major TN flare with facial paralysis and a small brain tumor with bacterial sinusitis/cellulitis 🥳🥳🥳🥳 ya know….living the dream 😇 we are warriors and survivors we can do this 😅
I hate all of that and am so heartbroken for you. It kills me knowing how much pain there is in the world. You are truly amazing 💜💜💜 thanks for the love and support! I wish you all the best and as much comfort that is possible in all you’re dealing with. You are so strong!!
i dont have any helpful advice because i've been there and i dont even have my own advice lol but sending you virtual hugs and love from one to another 🩷
Thank you so much 💜💜
Try singing at the top of your lungs too. Do it until you're tired of it. Sometimes that can feel like you had a good cry. But it's more fun than crying. "You can only go as far as you can see, but once you get there you'll see farther." - Unknown. One step at a time.
Thank you!! Sometimes singing is a trigger for me (really sucks because I love singing) but on a better day I will give it a try! I’m loving that quote a lot 💜
I’ve been diagnosed with Trigeminal Neuralgia since 2020. I had to go through many doctors and surgeons to finally get one doctor to agree to do a radio frequency rhizotomy, my TN is bilateral so i had it done on both sides. Right side was successful but the left side wasn’t and left me completely numb on my left side. We ended up discussing next steps and the next step was the MVD surgery. I went in May 16 2022 and underwent brain surgery, came home May 27, 2022 after being in the ICU for a week. It was semi successful, i do still get flare ups but not as bad. KEEP FIGHTING. I PROMISE IT GETS BETTER. YOU CAN NOT LET THIS TAKE OVER YOUR LIFE. I KNOW ITS HARD BUT YOU CAN GET THROUGH IT!!!
I’m so glad to hear it got better for you! Trying to hard to hold onto these positive stories I hear. Thank you for sharing! 💜
No problem! That’s exactly what I did before the MVD, it is so hard to deal with and the pain is excruciating but there’s light at the end of the tunnel. Like I said I do still get flare ups but nowhere near as bad as it was! I was ready to give up, but advocate for yourself and don’t take no for an answer. What side is your TN on? Have you gotten in with a neurosurgeon?
I am in Canada. My neurologist here we will not discuss the MVD surgery until I have tried whatever medications are available. And there are lots. That sucks because of the side effects. I think he thinks, well, I know he thinks that it is better to deal with the side effects than pain but that isn’t a good quality of life. I’m pushing for the surgery. My TN, was controlled for two years, until 2 1/2 months ago when the med, carbamazepine, quit working. I’ve been on three different drugs now so far and none of them are working. Horrible.
Keep trying! Keep advocating for yourself! I’m in the US in Virginia and it took me quite a few years to get any surgical options. There are a lot of complications that go with the MVD surgery, but in the end to me it was all worth it. I had a CSF leak and was temporarily paralyzed for 8 hours due to a lumbar drain, which led me being in the ICU for over a week. I do still get pain but not as bad. I’m currently still taking Lyrica and gabapentin.
Dm buddy! There's always hope, trust me!
Find your reason to live and hold onto that for dear life until you can make yourself the number one reason because you deserve it. I’m sorry you are struggling a lot. All I can say is we haven’t tried everything. There is always hope. Research, taking care of your mental, self-compassion. Breath, meditate, find joy in the small little things, and accomplishments that the average person takes for granted. Pace yourself and remember to take things one hour at a time. The little things eventually turn into big things with patience and pacing. This is your life so do what you can to take care of it no matter what others think or feel. Remember we are all different so everyone works differently. Sometimes we get carried away with Shame or guilt for being different, and having to navigate life in a different way, but all we can do is protect and nurture ourselves cause no one else will do it for us. You are not alone. And you deserve to have peace. Even if it’s a little bit. So give yourself a lot of grace, And enjoy the minutes you are pain free you deserve it. Stay present. And don’t be afraid to ask for help. Whether it’s therapy, antidepressants, or If you need to get on government assistance programs. It’s designed for people who are really struggling. And there is no shame in reaching out. It actually makes you courages. Take care of yourself ❤️
Thank you so much for the uplifting words! It’s so hard to remember these things when life feels unbearable with no breaks. I will revisit your words often to remember to give myself the grace and compassion I need
I’m glad! It’s definitely what I needed to hear when I was at my lowest and struggling so much. Keep fighting 💜
Dilaudid. That’s my only advice,
I haven’t heard about that ever! I’ll do some research. Thank you
I’d dead if it wasn’t for my dilaudid injection. Every 4 hours. Life is back to normal, and I promise you I was in a worst place than you… it’s hard to even think about it. I was face down in my bed tying nooses around my throat with no hope. Now I’m dependent on dilaudid and need it regularly but at least I’m happy again. Good luck with whatever you do Keep dilaudid as last resort,
Dilaudid! I have been on it… including for nearly 2 months after I was recovering from a broken hip. Full surgery and four pins. I was also given too much ketamine coming out of the surgery and went down the K hole. I knew about ketamine, but had never heard of the K hole. I spent the first week in bed obsessively, watching YouTube videos of people who had gone down the hole. Freaking nightmare at the time. Anyway, I was sent home with a two month prescription of Dilaudid. 20 mg every four hours. They monitored that very very closely. I’m sure that my neurologist would give it to me for this.
I take 4-8 every 4 hours Sometimes 12 at night if I’m flaring really bad
God, you’re lucky. You’ve got TN, but at least you have a dr. who’s willing to give you proper pain relief. What are you on for tn medication?
I stopped all the tn meds. It didn’t help enough and it made me not able to function in my masters program Maybe one day when I’m not in extremely intensive schooling I’ll be able to go back on one of them. But for now I just can’t Lyrica is the one I have on me at my house though
I was on carbamazepine when I got diagnosed and it worked for two years, now it’s not. Now I’m on even more carbamazepine and Lyrica. I’d rather be like you and take pain medication than these drugs. The Lyrica is giving me ugly side effects. Good for you.
I wish. The whole anti- opioid thing is alive and well up here in Canada.
Are you on TN medication?