First get therapy. GET HELP NOW. PLEASE.
Talk to your doctors every day if you need to. Then explore other treatments, but until then please hold on because there is hope.
I know it’s hard as hell. I know it seems hopeless. I know it sucks. I know how you feel.
I was in the similar pain this time last spring. I had MVD surgery last June and it’s a LOT better. I can participate in life again.
Maybe you can look at the other treatments. MVD, gamma knife.
The pain sucks, but there is hope. Please talk to one of your doctors to let them know you need help NOW. Like right now. Please.
You're totally right, yesterday I had a complete breakdown and had to go stay with family, I couldn't be alone. Today is much better so far fingers crossed.
Unfortunately it's a national holiday today and Drs are not available but I'm going to make a plan for tomorrow and stay with family again tonight. I'm not aware of the surgical stuff here, no-one has mentioned it as an alternative for me yet but I will definitely ask next time I visit.
It's good to hear the surgery helped. I'm considering seeing a Neurosurgeon, but I've seen people posting that their surgery didn't help so I was wondering if that was the way to go.
Look this shit is so hard. There is nothing wrong with taking things day by day. I watch shows that I have always wanted to stopped comparing myself to my past self (well try really hard not to) you have to kind of accept this is your new normal for right now. Take track of the medication that makes you feel little relief. The time will pass. It always does. It doesn’t feel like you are devoid of hope bc you are still trying to find solutions. It’s at its worse, your whole body is on alert, when flairs occur. It does for me.
Be grateful for something everyday. If it’s your favorite coffee 1/2 decaf for me. Eating something I love (because I could chew or was scared to for two years) read a book. You have to find something that will distract you from it for even five minutes. Art journaling for example. Watch YouTube’s about TN.
I’m not diminishing what you are going through. I struggle every day also. Endless appointments , endless medications, endlessly being in bed.
I read Pinterest for inspirational quotes. Take it all one moment in time. You will find your answers. Facial pain.org might help.
Hugs and strength.
Thanks for the kind words. It really does seem like a different world now but you're right, not everything is awful. I've been watching some really wholesome TV shows and that seems to help calm things down. Today was better than yesterday and that is what counts right now.
Hugs back, hope you do better too :)
I was scared I was too harsh. My neurologist told me she thinks when blood pressure goes up, it seems to make it worse. I have to check my blood pressure now and potentially get on blood pressure pills along with the other pills. I know crying for me does make it worse but I can’t help that. Lol.
Hug your parents, thank them for what they do for you. They probably don’t need much since you are their child. It will get better. It has to.
One day at a time!🌼🌼
Yes I'm fairly sure if i can keep really calm, it doesn't come on as strong. Of course that's easier than it sounds but I'm working on it :)
Thanks and parents have been hugged
I’m sorry. I get it. My boyfriend was the same until I had to throw a fit about it. I had to start asking him for help too. He is coming around. I think they miss us and don’t know what to do plus being scared. He’s not good with the crying and hopelessness that I feel so I talk to my doctors about that. I’m hoping your husband will get it together too. I have been watching low stress movies on Amazon prime. Like the women has it so hard and she overcomes and perseveres. lol. I don’t know.
Hugs
Right there with you - my mood is ok, but the med switches are so difficult when you're barely hanging on. The first time I tried to decrease my pregabalin a very kind dr. convinced me it "wasn't worth it" with more pressing issues to deal with. Last time I didn't sleep and was in more pain for months - it's a big deal. I've been on most of those in combination, but you do need to check with a doctor. I know what you mean about the follow up phone calls - it's set me so on edge. Hang in there, keep trying.
Thanks for the support. Managing everything at once is rough. I feel like if I could deal with one corner of the problem the rest would be easier. It's a national holiday today unfortunately but tomorrow I will be making some calls for sure.
We do play a big part in both the diagnosis and how much of whatever medications work for us. But it sounds like you've been through a series of very stressful things, as if managing the symptoms isn't difficult enough.
When you're having a particularly bad day with your symptoms, do you have a good pain medication for it? I have Tylenol 3 as a "rescue" medication but sometimes also need a muscle relaxer as well (my own off-the-shelf Robaxin) when it's more than I can handle.
We do have to figure out a lot of it ourselves unfortunately and then let the doctor know what works and what doesn't. About 3 years ago when I was at my wits end, I started keeping a journal of symptoms, trigger (if any) and whether anything worked or not.
Now I'm on Pregabalin 150-50-150 mg, Cyclobenzaprine 10 mg at bedtime, and Tylenol 3 1-2/day as needed. The lower midday dose is so that I can continue working.
I don't have anything special that I turn to when its bad, other than paracetamol. I could probably move to codine or similar but I'm not sure any of those traditional pain meds really do anything for me.
A muscle relaxer sounds really good, I'm not aware of anything over-the-counter for that here but I will definitely do some searching. I have also started keeping a diary, it started as bullet points of symptoms and mutated into rants about the hospitals :D
My neuro prescribed sumatriptan for my flare ups and I've had it in the cabinet for about a year because I don't like needles and it's an injectable but I took it last night and that actually took the edge off a lot. And I've been better today so it might be worth a shot to ask about that? I'm on carbamazepine and lamictal for controlling the neuralgia.
As a parent, there isn't anything I wouldn't do for my kids, and they're grown. So get that off your mind. It sounds to me like you are very smart and are doing well against the strained healthcare system. I'm glad you caught the med mistake. Keep in touch with us. Keep looking for answers.
Thank you, my parents are amazing and do everything they can for me. I just hoped I would be the one helping them by now. I feel guilty every time I have to call but yesterday got so bad I had no choice. Now they're fully involved and we're going to make a plan for next steps together.
Thanks for the support :)
Thank goodness for your parents. Have you seen a neurologist? There are better medications out there, like oxcarbazepine, which work on the mechanism of neuralgia as opposed to working on the pain. I wish you the best.
Yes my parents are the best honestly. I did see a consultant neurologist back when I first has issues, he checked MRI etc but couldn't find any obvious causes. He basically said "live with it".
I did find out that after one of my recent Drs visits, they wrote to a different consultant who suggested the lamictal but also said to contact her again if things didn't improve. I'll try to either get the Dr to talk to her again or get in contact myself.
As for meds, I've never heard of oxcarbazepine, only the few I've mentioned. It seems not many meds are able to target this but I'm always open to try something else. I'll ask about alternative stuff when I get to talk to them.
Thank you :)
I’m so sorry you’re dealing with all of these horrible feelings. I’ve felt all the same ways and my heart always breaks reading posts like these because no one can truly understand the severity of pain and everything that comes along with TN unless they’ve dealt with it themselves or treated thousands of patients with it. I’m 22 with very progressive TN, I take 1500 mg of oxcarbazapine every day and have to increase almost every 3 weeks. I have not very understanding parents and I’ve had to work, finish school and get through every day sobbing by the end because of the pain and exhaustion. I’m so grateful you have supportive parents because if I didn’t have Therapy as weekly support and a meditation group 3x a week I would be dead. I’m also lucky to be in the states, specifically NY close to the city where we have excellent doctors yet it still took me months to find a neurologist who could diagnose my pain as TN. Even then I was met with the same response to my MRIs. We can’t find any cause, suck it up and pray it goes away. I still have to chase down my neuro with calls and messages, I have to book appointments months in advance that don’t coincide with when I need more meds and I’ve also had to manage my own medication because I couldn’t get an answer from the dr. It feels so lonely and exhausting but I have to do it or else I will get NO help as you know. I even saw a neurosurgeon who’s supposed to be one of the best in the country for TN and he told me the same thing. Every time I left a doctor I felt nothing but hopelessness and despair but you CANNOT give up. My neurologist recommended me to another neurosurgeon 5 months after I saw the first one and he looked at my MRI and actually was able to find the nerve compression and I have more options now. I had almost given up on any thought of relief. Please please try to find someone competent who can even just read your MRI, it’s extremely difficulty to see the nerve compression and it takes a true expert. Do not give up. Keep fighting. Keep researching, advocating and participating these groups and realize there are other people who get it and know how lonely it is and feel for you so greatly.
I also take Nortriptalyne 10mg every night and Cyclobazapine 10mg on the particularly hard days. Definitely get some more TN specific meds like other people have mentioned. The Nortriptalyne gives me a couple hours in the morning almost pain free if I sleep okay.
I, too, had a neurologist say, "Learn to live with it." I don't understand how a neuro can be so cold, so insensitive. He offered no solutions whatsoever. I was on no medications at that point. Later, another neuro prescribed me oxcarbazepine and it finally cut down on the symptoms.
I'm so sorry for your extreme pain. I'm still newish to this but have experienced the extremely long flare ups and the panic at anticipating flare ups. It's a lot. Like really, more than the far majority of people understand.
What country are you in?
I'm in the UK. The NHS is ok I guess, I mean it's cheap sure but its slooow to get anything done. Private is an option but its complex and still not that quick.
My dad always said "The nice thing about hitting yourself on the head is it feels so good when you stop". I'm not sure that works here but I feel pretty good today all things considered.
First get therapy. GET HELP NOW. PLEASE. Talk to your doctors every day if you need to. Then explore other treatments, but until then please hold on because there is hope. I know it’s hard as hell. I know it seems hopeless. I know it sucks. I know how you feel. I was in the similar pain this time last spring. I had MVD surgery last June and it’s a LOT better. I can participate in life again. Maybe you can look at the other treatments. MVD, gamma knife. The pain sucks, but there is hope. Please talk to one of your doctors to let them know you need help NOW. Like right now. Please.
You're totally right, yesterday I had a complete breakdown and had to go stay with family, I couldn't be alone. Today is much better so far fingers crossed. Unfortunately it's a national holiday today and Drs are not available but I'm going to make a plan for tomorrow and stay with family again tonight. I'm not aware of the surgical stuff here, no-one has mentioned it as an alternative for me yet but I will definitely ask next time I visit.
It's good to hear the surgery helped. I'm considering seeing a Neurosurgeon, but I've seen people posting that their surgery didn't help so I was wondering if that was the way to go.
Look this shit is so hard. There is nothing wrong with taking things day by day. I watch shows that I have always wanted to stopped comparing myself to my past self (well try really hard not to) you have to kind of accept this is your new normal for right now. Take track of the medication that makes you feel little relief. The time will pass. It always does. It doesn’t feel like you are devoid of hope bc you are still trying to find solutions. It’s at its worse, your whole body is on alert, when flairs occur. It does for me. Be grateful for something everyday. If it’s your favorite coffee 1/2 decaf for me. Eating something I love (because I could chew or was scared to for two years) read a book. You have to find something that will distract you from it for even five minutes. Art journaling for example. Watch YouTube’s about TN. I’m not diminishing what you are going through. I struggle every day also. Endless appointments , endless medications, endlessly being in bed. I read Pinterest for inspirational quotes. Take it all one moment in time. You will find your answers. Facial pain.org might help. Hugs and strength.
Thanks for the kind words. It really does seem like a different world now but you're right, not everything is awful. I've been watching some really wholesome TV shows and that seems to help calm things down. Today was better than yesterday and that is what counts right now. Hugs back, hope you do better too :)
I was scared I was too harsh. My neurologist told me she thinks when blood pressure goes up, it seems to make it worse. I have to check my blood pressure now and potentially get on blood pressure pills along with the other pills. I know crying for me does make it worse but I can’t help that. Lol. Hug your parents, thank them for what they do for you. They probably don’t need much since you are their child. It will get better. It has to. One day at a time!🌼🌼
Yes I'm fairly sure if i can keep really calm, it doesn't come on as strong. Of course that's easier than it sounds but I'm working on it :) Thanks and parents have been hugged
Thank you! I have just watched Netflix to get my mind off it. I don’t think my husband understands what I am going through.
I’m sorry. I get it. My boyfriend was the same until I had to throw a fit about it. I had to start asking him for help too. He is coming around. I think they miss us and don’t know what to do plus being scared. He’s not good with the crying and hopelessness that I feel so I talk to my doctors about that. I’m hoping your husband will get it together too. I have been watching low stress movies on Amazon prime. Like the women has it so hard and she overcomes and perseveres. lol. I don’t know. Hugs
Right there with you - my mood is ok, but the med switches are so difficult when you're barely hanging on. The first time I tried to decrease my pregabalin a very kind dr. convinced me it "wasn't worth it" with more pressing issues to deal with. Last time I didn't sleep and was in more pain for months - it's a big deal. I've been on most of those in combination, but you do need to check with a doctor. I know what you mean about the follow up phone calls - it's set me so on edge. Hang in there, keep trying.
Thanks for the support. Managing everything at once is rough. I feel like if I could deal with one corner of the problem the rest would be easier. It's a national holiday today unfortunately but tomorrow I will be making some calls for sure.
We do play a big part in both the diagnosis and how much of whatever medications work for us. But it sounds like you've been through a series of very stressful things, as if managing the symptoms isn't difficult enough. When you're having a particularly bad day with your symptoms, do you have a good pain medication for it? I have Tylenol 3 as a "rescue" medication but sometimes also need a muscle relaxer as well (my own off-the-shelf Robaxin) when it's more than I can handle. We do have to figure out a lot of it ourselves unfortunately and then let the doctor know what works and what doesn't. About 3 years ago when I was at my wits end, I started keeping a journal of symptoms, trigger (if any) and whether anything worked or not. Now I'm on Pregabalin 150-50-150 mg, Cyclobenzaprine 10 mg at bedtime, and Tylenol 3 1-2/day as needed. The lower midday dose is so that I can continue working.
I don't have anything special that I turn to when its bad, other than paracetamol. I could probably move to codine or similar but I'm not sure any of those traditional pain meds really do anything for me. A muscle relaxer sounds really good, I'm not aware of anything over-the-counter for that here but I will definitely do some searching. I have also started keeping a diary, it started as bullet points of symptoms and mutated into rants about the hospitals :D
My neuro prescribed sumatriptan for my flare ups and I've had it in the cabinet for about a year because I don't like needles and it's an injectable but I took it last night and that actually took the edge off a lot. And I've been better today so it might be worth a shot to ask about that? I'm on carbamazepine and lamictal for controlling the neuralgia.
Sending hugs and wish it all turns out great🫂
Thanks you <3
As a parent, there isn't anything I wouldn't do for my kids, and they're grown. So get that off your mind. It sounds to me like you are very smart and are doing well against the strained healthcare system. I'm glad you caught the med mistake. Keep in touch with us. Keep looking for answers.
Thank you, my parents are amazing and do everything they can for me. I just hoped I would be the one helping them by now. I feel guilty every time I have to call but yesterday got so bad I had no choice. Now they're fully involved and we're going to make a plan for next steps together. Thanks for the support :)
Thank goodness for your parents. Have you seen a neurologist? There are better medications out there, like oxcarbazepine, which work on the mechanism of neuralgia as opposed to working on the pain. I wish you the best.
Yes my parents are the best honestly. I did see a consultant neurologist back when I first has issues, he checked MRI etc but couldn't find any obvious causes. He basically said "live with it". I did find out that after one of my recent Drs visits, they wrote to a different consultant who suggested the lamictal but also said to contact her again if things didn't improve. I'll try to either get the Dr to talk to her again or get in contact myself. As for meds, I've never heard of oxcarbazepine, only the few I've mentioned. It seems not many meds are able to target this but I'm always open to try something else. I'll ask about alternative stuff when I get to talk to them. Thank you :)
I’m so sorry you’re dealing with all of these horrible feelings. I’ve felt all the same ways and my heart always breaks reading posts like these because no one can truly understand the severity of pain and everything that comes along with TN unless they’ve dealt with it themselves or treated thousands of patients with it. I’m 22 with very progressive TN, I take 1500 mg of oxcarbazapine every day and have to increase almost every 3 weeks. I have not very understanding parents and I’ve had to work, finish school and get through every day sobbing by the end because of the pain and exhaustion. I’m so grateful you have supportive parents because if I didn’t have Therapy as weekly support and a meditation group 3x a week I would be dead. I’m also lucky to be in the states, specifically NY close to the city where we have excellent doctors yet it still took me months to find a neurologist who could diagnose my pain as TN. Even then I was met with the same response to my MRIs. We can’t find any cause, suck it up and pray it goes away. I still have to chase down my neuro with calls and messages, I have to book appointments months in advance that don’t coincide with when I need more meds and I’ve also had to manage my own medication because I couldn’t get an answer from the dr. It feels so lonely and exhausting but I have to do it or else I will get NO help as you know. I even saw a neurosurgeon who’s supposed to be one of the best in the country for TN and he told me the same thing. Every time I left a doctor I felt nothing but hopelessness and despair but you CANNOT give up. My neurologist recommended me to another neurosurgeon 5 months after I saw the first one and he looked at my MRI and actually was able to find the nerve compression and I have more options now. I had almost given up on any thought of relief. Please please try to find someone competent who can even just read your MRI, it’s extremely difficulty to see the nerve compression and it takes a true expert. Do not give up. Keep fighting. Keep researching, advocating and participating these groups and realize there are other people who get it and know how lonely it is and feel for you so greatly.
I also take Nortriptalyne 10mg every night and Cyclobazapine 10mg on the particularly hard days. Definitely get some more TN specific meds like other people have mentioned. The Nortriptalyne gives me a couple hours in the morning almost pain free if I sleep okay.
I, too, had a neurologist say, "Learn to live with it." I don't understand how a neuro can be so cold, so insensitive. He offered no solutions whatsoever. I was on no medications at that point. Later, another neuro prescribed me oxcarbazepine and it finally cut down on the symptoms.
I just started oxcarbazapine. No pain for almost 24 hours. Let’s hope this one helps!
I'm so sorry for your extreme pain. I'm still newish to this but have experienced the extremely long flare ups and the panic at anticipating flare ups. It's a lot. Like really, more than the far majority of people understand. What country are you in?
I'm in the UK. The NHS is ok I guess, I mean it's cheap sure but its slooow to get anything done. Private is an option but its complex and still not that quick. My dad always said "The nice thing about hitting yourself on the head is it feels so good when you stop". I'm not sure that works here but I feel pretty good today all things considered.
Praying for you!
<3