You know I read on here about how you all deal with this crap, And I have to tell you I'm amazed because I haven't had this all that long and already i fell like I'm loosing my mind it flat wears me out , I already has so much on my plate and then this is just insane, Though Im Semi Retired Now I feel like I cant even work part time the sad thing is Ive been working in the same profession for Thirty years and love it, And when I decided to retire I thought I would continue doing this part time, But I cant even do that Im so Frustrated!!!
Hi Ted,
I don't know about everyone else...but for the longest time, i DIDNT deal with it. At least, not well. I would have a bout of the zaps and burn..and go looking for a bottle of alcohol. Passing out was always the goal. Then, eventually...it got so bad that i was seriously making suicide plans.
Thankfully, i eventually found a doc who properly diagnosed me and helped get me started on some meds that help...both with the pain and with the depression.
I'm still learning to deal with it effectively. There are still days that i can't look at the future; i can't bear to think of another 40-50yrs with this pain.
But, the meds help a lot, and that helps me get back into doing "normal" things, which in turn helps me feel better about the future.
Anyway, the point i'm trying to make is that i'm not some super-human fighting this condition head on...but more just some poor smuck doing what i gotta do to face another day.
I"m glad that you found this site...there is a lot of support and knowledge here. And there's always a place to vent and and ear to listen. Welcome.
Wishing us all a peaceful and pain free day
~Mistee
Hi Ted and Mistee,
I've been dealing with TN for several years now with two glycerol rhizotomies under my belt (or rather inside my brain on the TN nerve). I also have MS with its variety of symptoms. Now I have to take several pills a day (gabapentin, carbamazapine, lamictal and one Klonopin at night). The drugs help with the pain but I feel so tired all the time. Can't tell if it is MS or the drug cocktail that is making me so lethargic. Could be both. Budgeting my energy wisely is my goal. I only schedule one outside thing a day and cut back on household duties on my "down" days. My good days alternate with bad (tired) days. I'm always grateful for the good days when I can be creative and more engaged in life.
Keep an attitude of gratitude for everything that is working right and you will manage this challenge. Also, get a good neurologist to help you with this.
Take care.
Lois
I came here and found tools!
Lidocaine cream or patches OR both
for face…dr got me an RX
I was able then to have lower dose of crappy TN meds.
Next
I asked neuro to give me a one months RX of Ritalin … I used them sparingly to research my MVD surgeon, and all I needed to know, learn
and to have energy and focus .
I read and printed THE SPOON THEORY from here or google .
TN is fine now with no pills or creams , @ 2 years… But it’s remission time, and not forever, so I hang out here where I can help… These people here got me through, with a previous script of anti depression, and a lot of hope!
Mistee,. I do know how and why you would turn to alcohol,because I understand by passing out you wouldn't feel the pain at least not for a little while. I have done what you have done but with pills, I can't stand the taste of alcohol.Are you ever concerned that drinking could end up being another problem down the road? Please don't think I am trying to say your wrong for drinking or trying to judge you.What I am doing is wrong in many ways.Self medicating, mixing pain meds, and mixing them with MM.I do understand why at this point in the game why at least if I was to over dose, it wouldn't be like I tried to end my life.I really do not want to die when I don 't have any pain worth bringing up now, because I took klonapin 10:30 am.this morning 10 mgs. and have had no pain since. I am sorry that I am not as strong as so many on here. When my pain is over the top I will do almost any thing to stop the pain. Even going to the ER when my pain is over the top. Who wants to go to the ER I hurt to bad. They have treated me very well and I come win no pain for a few hrs.with the fentanayl patch they put on at the ER with 2 mgs. of diludid on Sun.I was half better but untill today I still was having pain
but I could deal with so much better, This moring it all came like gang busters but the klonapin
Stopped it all.So how does everyone deal with this terrible pain when you know most of the time you can get something that will stop the pain for little while I still feel pretty good now from the klonapin this morning. I guess I am not as strong as many are here.I am working on it
I just pray that we all find better pain relief very soon.
Wishing all the best night possible.
Dawn
Does anyone suffer with panic attacks with this?
Hi Ted, great discussion topic. I just kept pursuing good medical attention until someone found a medication solution for me. I appreciate that I am one of the lucky ones, by a million miles! There may well be a solution out there for you to help you gain control of your pain. I would discuss some help for the panic attacks with your Dr. I understand fully why we have those, the thought that it may persist is terrifying sometimes. But for most that will not be the situation, I hope you become one of those.
Oh Dawn.....*laughs*....no, no. the alcohol thing was "before". I almost never drink at all now, and when i do..i can't make it past one beer without falling asleep (thanks to meds..lol). I know (and knew then) that ..that wasn't good for me nor a long term solution. I was talking about it to explain to Ted that..that WAS how i dealt with my pain before i got a better hold on it and myself.
But i sincerely thank you so much for you concern...it's great that we all care so much about each other. *hugs* Just one more reason i'm glad i found this place!!
As for panic attacks.....*sigh* after getting diagnosed and getting some relief going from the meds....on good days with no pain, i'd be in a constant state of fear of if/when it would come back or what would trigger it. (what am i talking about "would be"...hell...still am!) It would be a pain free day and just having my husband lean down to kiss me would frighten me to the point of tears.
Im getting better at dealing with that...the mood meds help some..but also i have this little mantra that i tell my self ..you know the whole "you are not in pain right now" kind of thing. But yeah, painless days aren't always "great" days.
Wishing us all peace and pain free (and fear free) days...
~Mistee
Hang in there. I am in my third year of TN and some days are unbearable. It is getting to the point I am barely able to work. I was sitting at my desk one day and trying to decide if I stuck the letter opener in my head if the pain would go away. If I have a severe attack at work I am not able to go home because I am not able to drive. The hardest part is never knowing when it is going to start and how long it will last. I have almost become a hermit because I am afraid to leave the house. The last time I went to the neuroligst I was trying to explain how severe the pain was and told him on may occasions I have wanted to go to the hospital but was unable to get out of bed. His reply was "that would be a waste of everybody's time". He wont give me any type of pain meds. I am taking a lower dose of tegretol and oxcarbamezepine in the morning and at night. I was only on tegrotol only at first but I had to keep upping the dose and I couldn't function. I was making so many mistakes at work and I was exhausted. I haven't been able to go out to eat with my family or friends for more than 2 years. Eating is a major trigger. When I am eating I am fine it starts about 15 or 20 minutes afterwards. I have tried acupunture, chiropractor, theapy different meds and hypnosis I have spent thousands of dollars and it has drained me. I had a tooth pulled and a crown down. The only thing I can say is sometimes it will go in spells and I might have three or four good days. When I do I take advantage of every minute. I think the worst part is nobody understands the illness. One minute you are fine and the next you just want to crawl in a hole. I am taking it 1 day at a time. I am thinking about filing for disability but I don't know if I can afford to quit work and wait a year or two to see if I am approved.
Sorry this is so long but I hold everything in and hide it so much it is nice to just vent once in a while.
Take care. I hope you find the help you need. This website has helped me get through this.
Lee
All emotions described are real and yes, it all sucks. Somehow I have gone many, many years appreciating the good days, in the start I had insurance, I no longer do. I am the soul caretaker of a husband in a wheelchair with a leg amputation and in kidney failure, taking him to dialysis and Dr appts, doesnt't matter how my TN is that day, it has to be done. Do I get down proviiding someone else so much care when I am in dire straights at times, you bet.He became ill 3 years ago (medical accident, grrr), how I have done it, can't tell ya other than I have! And I have not quit nor will I, all I can do right now is Gabapentin, and just keep on. My pets are huge in my awakening everyday. I do find relief in some drinks, not to pass out, but to dull things for just a while, not good no, but sometimes you find relief where it is. I ask a lot, why me, but in the end what is the use of that, it is what it is and it is me. So just know your thoughts, feelings and emotions are what comes with this and we all have to find our path to work our way to meet another day. And most of all, here we are all here for each other, care and understand. Gentle hugs,
Betsy
Thank you all so much for your support, as far as drinking well that won’t work for me I’ve been sober for almost 29 years, so that’s not an option, However I can see how so mown who doesn’t have. Drinking problem would turn to a few drinks in a heartbeat, last night was a very bad night for me, my symptoms are in my eye it feels like someone is stabbing me in the eye and twisting it, so last night when I wrote this my panic had kicked in as well giving me a double whammy , my life was already complicated before this happen to me, my wife who is my best friend is 10 years younger then me has been dioganosed terminal, she has 3 beatufull young children twins 8 and one 7 one of the twins is special needs, I’m in the middle of adopting them, she was hurt badly by her x and due to complications of her injury it will take her life ,so to now have this wonderful Crap going on now, is just another thing I have it deal with, My panic I believe is that I’m wondering how I can take care of the children ith my health now, but I have always been a survivor and I will survive the this!! Thank you all for your words of inspiration
Ted
I know how you feel!! I am 12 weeks out MVD surgery on my left side, however the right side is getting worse daily. I am dealing with the depression and just staying away from most ppl, when I can… I have 5 kids and I manage a salon and work behind the chair. I have had TN for 7 years but I decided I wasn’t gonna let this control me… I’m in pain every day. I’m on gabapantin which at least helps control it some. I start seeing the pain management dr on the 16th… But you ask me how I do it. I have 5 kids and no matter what I am determined to give them the best life ever!!! Don’t get me wrong there are some days that just feel impossible but I know I can make it thru with gods help the support of my family and determination!!! Don’t give up. I have trained myself to handle a pain tolerance of up to almost a 9 before I take any meds… You can do it!! Just don’t give up ever!!
Well Barbie we have two 3 things in common TN bunch of kids and both Hair Dressers , How you do hair with this amazes me
Barbie32 said:
I know how you feel!! I am 12 weeks out MVD surgery on my left side, however the right side is getting worse daily. I am dealing with the depression and just staying away from most ppl, when I can… I have 5 kids and I manage a salon and work behind the chair. I have had TN for 7 years but I decided I wasn’t gonna let this control me… I’m in pain every day. I’m on gabapantin which at least helps control it some. I start seeing the pain management dr on the 16th… But you ask me how I do it. I have 5 kids and no matter what I am determined to give them the best life ever!!! Don’t get me wrong there are some days that just feel impossible but I know I can make it thru with gods help the support of my family and determination!!! Don’t give up. I have trained myself to handle a pain tolerance of up to almost a 9 before I take any meds… You can do it!! Just don’t give up ever!!
What does the Ritalin do?
Kc Dancer Kc said:
I came here and found tools!
Lidocaine cream or patches OR both
for face......dr got me an RX
I was able then to have lower dose of crappy TN meds.
Next
I asked neuro to give me a one months RX of Ritalin ...... I used them sparingly to research my MVD surgeon, and all I needed to know, learn
and to have energy and focus .
I read and printed THE SPOON THEORY from here or google .
TN is fine now with no pills or creams , @ 2 years..... But it's remission time, and not forever, so I hang out here where I can help...... These people here got me through, with a previous script of anti depression, and a lot of hope!
Meds and gratitude every single day. That being said, it IS extremely frustrating. I too have a job I love and I can't do that job on high doses of meds. So it's tough. The bad pain days I get a little panicky. I worry about what I'm going to do when the meds stop working. I'm in no way out of pain now but it's under control. I think it helps that I do have so much on my plate at times. Distractions are good. If I'm in pain and a friend invites me for coffee or a glass of wine, I go anyway. It's a really good distraction and they have no idea that I'm in pain. I have a very busy household as well. I've also been reading books on happiness. I just read The Happiness Project and I'm going to start my own happiness project.
I'm off to my neuro appt. I have a lot questions thanks to this site I've learned so much about TN.
Ted, I am so sorry to hear of your wife's diagnosis, deeply sorry. I know how hard it can get taking care of my hubby (let alone the heavy heart), but we have pets not human kids, so can only imagine all the emotions you are experiencing. But God Bless You for adopting them, don't think too much, I do that, I overthink everything, but always get through. Different than human hair, but there are days getting my dogs (200lb long haired dogs!) ready for shows or to go do therapy at nursing homes, I just don't think I can do it. The constant motion on the right side is so hard, but I do it! And you can do anything! Be good to yourself, you are going through a lot and you are in my prayers.
Betsy
Ted, I am so sorry about your wife. You saiy you are a survivor. I am sure you are as we are all. Somewhere on this website I saw a picture that said:"the toughest battles are given to the strongest soldiers". I printed it out and it is now on my wall next to my favourite painting.
Everybody here is so wonderful - I came home from work having had a really bad day and I am so glad I can go on this website. I wish you could all come around and we could have a group-hug or something!
Ted, a big hug to you.You will survive this!
Great discussion topic!
Ted, I’m so very sorry to hear about your wife’s condition. (( hugs )) I hope you have support around you to help you and your family through these difficult times…
I used to be a hairstylist too…long time ago! 
I think since TN is so individual and we all have different pain thresholds and circumstances it’s really important not to compare ourselves to others… We share so many similarities and I think what’s helped me the most is knowing I’m not alone with TN.
That there are so many of you that really know what I go through, and having this support group at LwTN has been a huge part of being able to hold on to some sanity during my darkest moments with TN.
I’m a very positive person, always have been, I’m fortunate to have a wonderful husband, and two daughters who have been so incredibly amazing! As my life changed so did there’s and yet they continue to be my biggest cheerleaders and are so kind and helpful.
Living with TN has completely changed my life it has tested my positive spirit many a time.
I’ve learned a lot about myself .
I guess where I am now at this stage in my TN journey is an interesting place, I think I’ve finally grasped the whole living in the moment concept. I’m no longer looking ahead, wondering when ill be back to work, or what will my pain be like a few hours from now let alone a few days, weeks, months, years…this has been HUGE for me.
I’m a planner by nature so you can imagine how difficult this has been for me, but it’s good. It’s really taken a lot of the pressure/stress I put on myself away.
As they say Rome wasn’t built in a day, but I’m so much more aware of it and more at peace as a result.
I too read a lot of self-help/ pro positivity type books and feel these are great reminders, this helps me cope.
We can be our own worst enemies, giving ourselves permission to grieve, be angry, sad, etc is extremely freeing…and necessary…we’re human.
Each one of us has to be incredibly strong and find our courage to deal with such high levels of pain.
I wish we didn’t have too…
(( hugs)) Mimi xx
Well put Mimi
This is the first day I have had multiple severe pain episodes not just the little shock but the wham stab me in the eye and twist twist twist, it has drained me Completely
I always considered myself as having a high pain tolerance but this is kicking my a$& sorry to vent but I needed to