You know this thread and our individual responses really gets to the heart of what TN and other ailments of which not much is known is all about.
It affects us all differently and yet we can all relate to the gamut of feelings and emotions shared.
I just want to say I’m very grateful to have found a place where others really know what it’s like.
I’m no Pollyanna, I’m just a simple woman who is trying to figure out how to get through the ups and downs of TN and maintain some sanity and positivity along the way.
As we all know…it’s not easy.
I’m currently in a stage of frustration at the lack of research and adequate pain maintenance for us.
So Thankyou all for being true to who you are and offering support and kindness and your stories so that we may all feel less alone along the way.
Mimi
Shindig, it’s hard to convey in words without sounding weird, but I want you to know that I am so incredibly impressed with you and your ability despite what your going through to be so proactive and knowledgable about your situation!!! Knowledge is power! Its easy for me in Canada to say “go to your doctor, or the ER” because here we don’t have to worry about co-pay and cost each time we use our medical system. It’s so not fair how our two medical systems differ so drastically, you all have the added stress of the financial costs/burdens of your health conditions.
I keep you close in my thoughts, and pray you’ll get answers and a sense of well being soon.
I like your idea about the game apps! I wonder if you could set up your own charitable site with the money going to research for your condition? Something to think about…
Take care of you.
I too have nothing positive to say about this stuff. My friends have abandoned me because I cant get out and about as much as would like for me to, its very sad! I gave up my job because I was unable to make it to work, or if I made it in I showed up late or left early, I just couldnt keep up with my duties like I could before TN. Quitting my job because of this crap has caused many arguments between my dad and I sometimes we go weeks or months without speaking. His thought was that "I should have been strong enought to work thru the pain" and "I need to suck it up and deal with it" but oh well, I can only do what I feel I can do. I know my body better than anyone else.
I too have just started on my ATN journey. My pain is only 3 weeks old. I was in the hospital this time 2 weeks ago after a week of no food, sleep, or a day without excruciating constant pain along with some type 1 pain. My friends were my salvation that week. My neighbor/friend stepped up and helped me so much. My friend/ex-roommate drove 30 min to come pick me up and take me to the hospital. I have gotten the help I need since then. My family, friends, and community have all stepped up.
Just don't let people treat you like you are anything less than someone in pain who needs help. Use all the help you can get. Use every resource you can find. Research and know all the different drugs and treatments by heart (or at least have notes on each one that you take to the doctors). I am willing to try anything, but only if I research the heck out of it first. Knowledge is power! Be powerful!! This disease has really changed my life. I am only 23. Before I was just starting out training as a consultant at a software company. I was after the money and everything it would get me. I wanted to travel and live expensively. Now I want to go back to get my masters in BioStatistics to work with Pain Disorders. This has had a clarifying effect on my life.
FIND THE RIGHT DOCTOR. Don't settle. SEARCH!! Have your family, friends, and family's friends search. Find a pain specialist. Every Neurologist I've seen doesn't know a thing about pain. This is a pure pain disease. You need a pain specialist. I actually found one that specializes in non-opiate pain management. I doubt I will ever be totally off of them, but I hopefully will still have my brain.
You have already found one of the best things. This website. I felt so much better knowing that I have all these people who will answer my question. One piece of advice. ONLY READ POSITIVE POSTS. IGNORE NEGATIVE PEOPLE!! I wish I could underline, italicize, and bold that!!!!!! I would just start crying when I read the negative ones about pain. KEEP POSITIVE! And definitely get the "Striking Back! The Trigemial Neuralgia and Face Pain Handbook." Mine came yesterday, and it is an amazing resource. So is this website. (Click on 'Face Pain Info' at the top of the page, not the drop-down.) The treatments and other resources on that page are invaluable. Embrace the new life style. I agree that you should definitely not live with the pain. Get the pain management that you need!! You can feel whatever you want, but don't let depression come in. Be happy. Know what is important. And do those important things! Let this change you into a more empathetic, compassionate, and knowledgeable woman. I know that it has already done that for me. Good luck! If you ever need a friend or a shoulder. You have one in me.
~It isn't what happens to you that makes you who you are, it is how you react to it. Who are you choosing to be?~
Caroline, while education, a positive attitude, support are very important and essential to your personal health as time goes on you will find you will have yourself to rely upon. Drinking ALL beverages through a straw and cutting your food in infant sized bites during the episodes are resources I have found. During a stressful implimentation of a new software for the healthsystem I work for and non-stop end user training (I am a trainer) finding ways to continue were endless. Ice packs and Advil were a help (not a relief but an aid to cope), relaxation and controlling my breathing would also calm the storm of pain to a tollerable level. Each TN afflicted will find an avenue to cope, we learn from each other, share coping mechinisms, seek advice from those who have struggled far longer than we have, and aid each other during the dark moments. Your journey has only begun, as you too find coping skills I hope you will share them, as well as seek help.
mailladyz1, yes we know our own bodies; but using our disease as a crutch is not healthy either. As a single parent I know too well going to work in pain, returning home just wanting to crawl in bed and cry and yet dinner needed to be made and homework completed. Giving up was not an option, leaning on family and friends too much would have alienated them from the moments when I could not push thru the pain and really need their help. You will find a way to continue forward, don’t let the disease own you; you need to own the disease. May I suggest a second opinion with a different neurologist.
Shindig, is the taser what caused your tn, lol...took big ones to try that!!
I have to send my prescriptions by mail too, when I request a refill I usually get mine in the mail in a day or two,, and it is much cheaper! I get a 90 day supply for the price of 30 days at the drug store.
I have about 2k out of pocket now for proceedures and once my MVD is done, it will be much worse. Bills aint getting paid these days and my credit is shot, so no, i dont see one darn thing that is good about this crap. shindig said:
I can only dream of a world where there's a patient care coordinator walking you through this shit storm. I got a letter from the insurance today stating there's some policy if you're on long term medication you have to buy it through their mail order program, they won't cover more than 3 prescriptions at local pharmacies for long term prescriptions. I have about 3-4 more days worth of neurontin and just today was notified I have to get it through mail order. Wonder how long it takes to set that up. I don't have a physical prescription to send them either because the doctor sent it digitally to walgreens.
Costs $40 for each doctor visit as a co-pay, then you still get stuck with extra over what the insurance pays. I have to pay around $350 for each MRI after insurance. Costs $250 co-pay for ER visits in addition to any overages from non "pre-authorized" tests they do while you're there. And this is considered great insurance provided through a white collar job paying more than 80k/year salary (thanks to spouse).
I'm afraid I have to agree with crashgirl on this. I just can't react to such bad pain with a smile - or that I can't interact with anyone because of the meds, or can't work, drive or see much of my family because I'm so nauseous and loopy. Honestly I am in a good mood most of the time but I don't believe negativity is going to make it worse. I recommend taking a high dosage of b12, not because I think it's a cure but because most older adults have a harder time absorbing b12 from food and b12 is responsible for myelin health. But it CANNOT cure a myelin problem, unless it's a b12 deficiency (which is nasty, I know because I had one for a year before it was diagnosed). I am all for trying other things but unless my having this disease saves someones life, it's just another crappy illness.
crashgirl said:
Iso no, i dont see one damn thing that is good about this crap. shindig said:
I am so sorry you have ATN and although this disease supposedly affects older adults I am seeing so many on this website that have it in their 20's and 30's and one poor girl who is only 11. I think so of the resources need to be updated for all ages. If you can get MVD for atypical it usually works better and longer the younger you are. Look into it. You have a good attitude!
Carolanne said:
I too have just started on my ATN journey. My pain is only 3 weeks old. I was in the hospital this time 2 weeks ago after a week of no food, sleep, or a day without excruciating constant pain along with some type 1 pain. My friends were my salvation that week. My neighbor/friend stepped up and helped me so much. My friend/ex-roommate drove 30 min to come pick me up and take me to the hospital. I have gotten the help I need since then. My family, friends, and community have all stepped up.
Just don't let people treat you like you are anything less than someone in pain who needs help. Use all the help you can get. Use every resource you can find. Research and know all the different drugs and treatments by heart (or at least have notes on each one that you take to the doctors). I am willing to try anything, but only if I research the heck out of it first. Knowledge is power! Be powerful!! This disease has really changed my life. I am only 23. Before I was just starting out training as a consultant at a software company. I was after the money and everything it would get me. I wanted to travel and live expensively. Now I want to go back to get my masters in BioStatistics to work with Pain Disorders. This has had a clarifying effect on my life.
FIND THE RIGHT DOCTOR. Don't settle. SEARCH!! Have your family, friends, and family's friends search. Find a pain specialist. Every Neurologist I've seen doesn't know a thing about pain. This is a pure pain disease. You need a pain specialist. I actually found one that specializes in non-opiate pain management. I doubt I will ever be totally off of them, but I hopefully will still have my brain.
You have already found one of the best things. This website. I felt so much better knowing that I have all these people who will answer my question. One piece of advice. ONLY READ POSITIVE POSTS. IGNORE NEGATIVE PEOPLE!! I wish I could underline, italicize, and bold that!!!!!! I would just start crying when I read the negative ones about pain. KEEP POSITIVE! And definitely get the "Striking Back! The Trigemial Neuralgia and Face Pain Handbook." Mine came yesterday, and it is an amazing resource. So is this website. (Click on 'Face Pain Info' at the top of the page, not the drop-down.) The treatments and other resources on that page are invaluable. Embrace the new life style. I agree that you should definitely not live with the pain. Get the pain management that you need!! You can feel whatever you want, but don't let depression come in. Be happy. Know what is important. And do those important things! Let this change you into a more empathetic, compassionate, and knowledgeable woman. I know that it has already done that for me. Good luck! If you ever need a friend or a shoulder. You have one in me.
~It isn't what happens to you that makes you who you are, it is how you react to it. Who are you choosing to be?~
as a nurse, I agree with pretty much everything Porcelina said. I was going to post something similar till I saw her response.
Porcelina said:
I think it makes me a better nurse. I now know what it’s like to be in excrutiating pain (far worse than childbearing!), what it’s like to need medication when I hated meds before, what it’s like to be a patient in the health system, and what it’s like to have something that most people never seem to have heard of. And definitely each time I have had to wait in the ER or be admitted onto a ward what it’s like to be that patient sitting there (for example the last time I hadn’t eaten for almost 24 hours by the time the hospital gave me something to eat and I threw it straight back up again, nutrition of patients will be high on my list!). It also highlights what I can do better for my patients and what my workplace does do really well (in pediatrics) compared to adult health. I will never dismiss a patient’s pain that’s for sure. All this started only in March this year and I have already been to the ER 3 times and admitted twice (one last week). By the time my new referrals will have been done I will of been under the care of about 7 teams of doctors so I have seen an array of different personalities … I also will have no problems advocating for my patients as I have had to advocate for myself!
i so agree with the ignoring the negative comments! I am having an MVD in October and refuse to believe it wont help, I have no choice. The meds have left me unable to work ( i drive all day for work as an insurance adjuster) and the only hope I have is getting the surgery to get off the meds. Some days I am not sure which is worse, the tn or the treatment, but again, I refuse to be negative, it is what it is, so I deal with it. You can have a negative day, but dont take it to heart!
Wendy
tkal said:
I am so sorry you have ATN and although this disease supposedly affects older adults I am seeing so many on this website that have it in their 20's and 30's and one poor girl who is only 11. I think so of the resources need to be updated for all ages. If you can get MVD for atypical it usually works better and longer the younger you are. Look into it. You have a good attitude!
Carolanne said:
I too have just started on my ATN journey. My pain is only 3 weeks old. I was in the hospital this time 2 weeks ago after a week of no food, sleep, or a day without excruciating constant pain along with some type 1 pain. My friends were my salvation that week. My neighbor/friend stepped up and helped me so much. My friend/ex-roommate drove 30 min to come pick me up and take me to the hospital. I have gotten the help I need since then. My family, friends, and community have all stepped up.
Just don't let people treat you like you are anything less than someone in pain who needs help. Use all the help you can get. Use every resource you can find. Research and know all the different drugs and treatments by heart (or at least have notes on each one that you take to the doctors). I am willing to try anything, but only if I research the heck out of it first. Knowledge is power! Be powerful!! This disease has really changed my life. I am only 23. Before I was just starting out training as a consultant at a software company. I was after the money and everything it would get me. I wanted to travel and live expensively. Now I want to go back to get my masters in BioStatistics to work with Pain Disorders. This has had a clarifying effect on my life.
FIND THE RIGHT DOCTOR. Don't settle. SEARCH!! Have your family, friends, and family's friends search. Find a pain specialist. Every Neurologist I've seen doesn't know a thing about pain. This is a pure pain disease. You need a pain specialist. I actually found one that specializes in non-opiate pain management. I doubt I will ever be totally off of them, but I hopefully will still have my brain.
You have already found one of the best things. This website. I felt so much better knowing that I have all these people who will answer my question. One piece of advice. ONLY READ POSITIVE POSTS. IGNORE NEGATIVE PEOPLE!! I wish I could underline, italicize, and bold that!!!!!! I would just start crying when I read the negative ones about pain. KEEP POSITIVE! And definitely get the "Striking Back! The Trigemial Neuralgia and Face Pain Handbook." Mine came yesterday, and it is an amazing resource. So is this website. (Click on 'Face Pain Info' at the top of the page, not the drop-down.) The treatments and other resources on that page are invaluable. Embrace the new life style. I agree that you should definitely not live with the pain. Get the pain management that you need!! You can feel whatever you want, but don't let depression come in. Be happy. Know what is important. And do those important things! Let this change you into a more empathetic, compassionate, and knowledgeable woman. I know that it has already done that for me. Good luck! If you ever need a friend or a shoulder. You have one in me.
~It isn't what happens to you that makes you who you are, it is how you react to it. Who are you choosing to be?~
It is not fatal. Also, there is a genuine possibility of you getting treatment of some kind and being cured. You don't have to take the meds if you don't want to, its okay to endure the pain when it comes instead dealing with the side effects of the medicine.
I don’t think it is good. The best thing that could happen is getting rid of it like getting rid of the plague. I believe bad things happen to good people and this is bad, very bad. The one thing, though, I must admit, it was very hard for me to understand this condition until I had it. I have tremendous compassion for anyone who comes in contact with this condition. I hope and pray that you find the path to being pain free. Would love to see it disappear from your life.
Mary
Min, I am exactly the same. I get crabby if someone pushes me when I feel really icky and I don't care about much of anything except where I can lay down and rest. As long as things are under control though I do great.
Christine, I agree with most people that I am now more compassionate and value what's really important (my family) alot more. I have to say too though that I have really slowed down in life. I now "take the time to smell the roses". I used to burn the candle at both ends and if I could have found a third, that one would have been lit too. I always had a million things going at once and I've always worked best under pressure. Now I just can't multi-task as well with my meds so everything is slower. This isn't a bad thing though. I now listen to my kids and all of my family more and take the time to sit and visit with them. I'm getting to know all of them better. Of course, I have to write everything down so I remember it but that's not so bad either. I still hold down my full time job as a programmer/analyst but I don't think I'll be able to pursue the promotions I had hoped to. Oh well, this is putting food on the table and paying the bills so I'm good where I'm at. Before I wouldn't have been satisfied with this.
I also don't drink alcohol now which is a good thing. I drank too much before. I wasn't an alcoholic because it was very easy to stop when I didn't feel well but I still drank more than I really should have.
This is a very good topic - it's fun to see the responses. When I first read this I thought - OMG - how can there be any good but there definitly is. Thanks for bring this to light!
Min said:
It's Hard to be positive when you are in pain. I do really good when my pain is controlled. But when I have new symptoms and I have to get stronger medicine..... Well~ I turn into a different person and I just don't care. I get mean and unfriendly. So my point is your perspective changes frequently, as with this TN, it constantly changes. At least mine has within the last year or so. I am normally pretty positive person but when the pain hits anything can happen. . . I am only human.
I am sorry, but I just have to say,,that If I were not taking medicine.. It could be fatal to the people around me... Don!!! LOL I would turn into the Hulk..........
Don said:
It is not fatal. Also, there is a genuine possibility of you getting treatment of some kind and being cured. You don't have to take the meds if you don't want to, its okay to endure the pain when it comes instead dealing with the side effects of the medicine.
Hi Christine I am sorry so many people left you negitive responses to your post. I am sure you are really freaked out and scared I know I was when I first got TN I was diagnosed in Jan 2012. I read some stuff on the FPA TN facebook page that really upset me and got me very depressed and scared the hell out of me. Lets hope that it is the shingles virus and it will eventually go a way and not leave any neualgia or neurophy behind when it is cleared up. Nerve pain is hard to deal with but try to stay positive. I do not know if the doctor told you about needing to get your blood tested about every 3 months or so that tegratol is hard on your liver. If the side effects are too bad from the medicines there are other medicines that you may tolerate better I take Gabapenin it seems to work pretty well and has the least amount of side effects. But all meds work differently on everyone. Try to stay positive and brave. The one thing that I have learned from all of this is to be very proactive with my medical care and just try to cope the best you can I have tried heat it helps a little and I cut my food into small bites do not eat crunchy things when my face is bothering me plus I try to drink all drinks at room tempature not to hot or cold and use a straw. it is funny to drink coffe out of staw, LOL but what ever works I use small hand warmers and hold them to my face if I need to when I am out in cold places or when the AC in the car or the AC's in places is blowing on me and I can not get away they are small and discrete I carry them where ever I go. I hope your pain will go away when the singles are done I know they can be very painfull they really play with your emotions I had them when I was in highschool on my arm I can not imagine having them in my mouth God bless you and again I hope that your pain will go away and stay and stay away . Don't do not let some of these post scare you stay brave and try to stay postive we do not have a choice
You should also remember that people post more when they are going through a bad episode and don't usually post when they are in remission. They are living their lives, so you may get less positive posts or perhaps more honest posts from a person who is having a bad time. Me, I would prefer the honesty of someones journey be it positive or negative. Also everyone is different and not everyone experiences it the same way.
It is scary but information is power. I have learned a lot by people's posts. What different things may work that I never thought of.
One positive thing is that the people here give me ideas to help deal and treat this stupid illness. And I am thankful for their compassion in doing so. In this age of having to pay for information, all these people are giving it away for free just to help someone else. So I think a good thing is interacting with all these compassionate caring people, be it a positive or negative answer - it still is honest and a great source to help you.
Yep, TKAL the only positive thing about TN is bringing people closer together. That's what life is really all about being there for one another. I think that is what TN's purpose is. If you could put a positve spin on this disorder that would be it. To teach others to slow down and get back to helping one another and being compassionate. Not neccessarily us, but the people around us as well.
very well said, some days I am on here and get so depressed, some days I am on here because I am depressed and need to connect, and other days I learn alot to help me. It was from this site and talking to Red that I got medication to help me deal with this more. We all have good and bad days with this, and hope that the good are more often.
Negative comments most likely reflect someone having a bad day if nothing else. None of us are thrilled we have this, but with any disease etc it is normal to have a bad day. We are here, we arent dealing with a fatal illness or being told we only have so much time to live, so I think there could be worse.
Christine you are new to this, there are so many emotions I went through when I found out, but now that I have had it for 7 months I have more acceptance and feel better that I can handle it. You will work through this soon, you just found out and it was a shock I am sure, but if I can add a positive, you will be amazed at your strength! And you will find your own positive!
wendy
tkal said:
You should also remember that people post more when they are going through a bad episode and don't usually post when they are in remission. They are living their lives, so you may get less positive posts or perhaps more honest posts from a person who is having a bad time. Me, I would prefer the honesty of someones journey be it positive or negative. Also everyone is different and not everyone experiences it the same way.
It is scary but information is power. I have learned a lot by people's posts. What different things may work that I never thought of.
One positive thing is that the people here give me ideas to help deal and treat this stupid illness. And I am thankful for their compassion in doing so. In this age of having to pay for information, all these people are giving it away for free just to help someone else. So I think a good thing is interacting with all these compassionate caring people, be it a positive or negative answer - it still is honest and a great source to help you.
Just wanted to say I love y’all answers to this. The good thing about TN it has brought more compassion from others to me. All my family and friends are encouraging me to keep pushing forward. They all know how upset I would be if I just gave in and let the floor underneath me drop away. Also I am one of the best damn actors around right for covering up the amount pain I’m actually in. I don’t one everyone to worry about, it freaks me out. I’m more focused on my goals in life because of tn. I don’t want to waste my time anymore than I already do because of pain, so focusing on goals like getting my bachelors is important.
Reading only positive threads responses will not give a balanced view of tn. I would have missed out on so much info if I were to skip over the negative. As someone said people are usually in pain and much more honest at that point. Also I’d be bummed even more if everyone skipped my post because it was negative and i was having a rough time and just need a little encouragement or an attaboy, kwim? This my one spot I have to be pretty free about my frustration and all the other not fun things that go along with tn.
