Where ever you are on your journey with TN, how do YOU deal with your emotions?

General General TN & GPN (Old Site)
41

(( Nana )),
I understand, I went through a time last year when I really was miserable. I had to stop working at a job I loved, I’m still employed but on long term disability, I missed a job promotion which I was so excited about. I had to stop driving from the vertigo caused by my meds and then the high doses of meds. There went my independence. I missed saying goodbye to my mother Inlaw as she lay dying a 7 hour plane ride away, I couldn’t fly. I kept cancelling last minute on friends due to the pain.
I felt guilty at how TN was affecting my husband and children, missing school events. As I put on weight from being inactive due to the pain and vertigo my self esteem took a beating.
I was miserable.
And then there was the horrid pain, meds wouldn’t touch anymore.

I don’t know how I survived. But I did, not unscathed, but one day at a time, one foot in front of the other. It’s possible. Each month I’d think ok, in a few weeks I can go back to work, and in a few weeks I still wasn’t able too. This happened for 6 months before I stopped thinking and being disappointed about it. This made it easier emotionally. It helped, choosing how I reacted to things out of my control.
Talking to everyone here and sharing with my close friends and family helped me cope to a certain degree, but mostly it was a constant learning process and still is.
Always have hope. Google inspirational quotes, read inspirational books, seek out a therapist or someone you trust to talk too. But always have hope.
Thinking of you and sending you positive vibes for better days ahead.
You’re not alone.
(( hugs )) Mimi xx

42

I cry, thats about it .

43

Oh Nana - Do I ever understand about feeling like a ticking time-bomb. After my pain returned about 9 months after my repeat MVD and then my stereotactic surgery failed, I was forced to quit work also. Pain meds have limited my driving capabilities and every single antidepressant I have ever tried has turned me into a raving lunatic. Currently I am taking nothing, and so I cry a lot. I had just moved to a new state when this all happened and had only been working for a couple of years, so I hadn't made any real friends. After all the last minute cancellations d/t pain exacerbation.... those few acquaintances don't even call anymore. Sometimes my phone doesn't ring for days. Makes me wonder why I even pay for one. Recently my significant other (who has his own problems with alcoholism) decided he couldn't tolerate me anymore and after 30 years, just threw me out of our second home (back in the state where my son & 3 grandkids live). Now I can't even go see them because I have no where to stay and can't drive anywhere. Basically, I am on my own. It's hard. I am not religious and have really lost my faith in just about everything and everyone. I just try to get through each day, one day at a time. I am thinking about going for another neuro consult...maybe the third time will be the charm. Wishing you a better day today.

44

I am three months into this and I am worried. I'm 41, have a wife and four kids, a railroad engineer (which is possibly the worst job to have with TN type 2). I am going on vacation this week with my family to the lake...pontoon, sun, fishing, swimming, etc. and I am sure I will not be able to do the things I did last year. I have been shopping for the largest brimmed (read: dorky) hat possible to cut down on the sun and wind. Totally frustrated with the whole situation...TN is taking a huge bite out of my life and I'm pissed that I know more about it than my doctors do. Gabapentine...not impressed. OK, rant over. I hope you guys have better luck than I'm having right now... *raising my vodka lemonade to you all*

45

Hi caseyjoenz & nimitor ,

This is the place (LwTN) where people truly understand your feelings.
Feel free to vent away, anytime.
I don’t know either of your stories (yet) but I will tell you to try not to be discouraged.
I know it’s hard, it’s a daily process trying to deal with pain, meds and all the changes that occur living with TN.
But with every story of despair, there is also hope and stories of success.
You cannot lose sight of that as difficult as it gets, without hope for better days we’d just have misery and that’s just NOT acceptable.
I’ve lived both ends of the spectrum with my TN and I can honestly say that it’s so important to allow yourself to grieve the current negative effects TN has on your life but never stop hoping and believing that you can have a better quality of life.
Remissions are possible.
Non-destructive procedures have helped many achieve long lasting relief of pain, many live well and function normally with medication. It’s possible.

Together we can raise awareness and encourage each other for a better future with NO pain.
It’s easy for me to type these words and hope that I’m helping, but it’s not as easy for me sometimes to listen to what I tell others.

Just wanted to say hi, hope you have a great vacation Casey.
Nimitor, I hope the tears start to evaporate and relief of pain and joy return.
Huge ((( hugs )))

46

I just want to encourage you to hang in there with the Gab. I have to take a larger dose at night, so I can sleep though the worst of that zoned feeling. Then I take a smaller dose through the day, every six to four hours. You really need to let this stuff build up in your system over some time. Your body will get to a saturation point, and then you will get used to it, and it won't bother you at all. It takes some real patience, and many people need a lot bigger dose than others. The pain relief can be amazing though. I kept stopping the larger dose, when I felt better and that was the wrong thing to do. Stay on it, and give it some time.

And I know you are probably kidding but alcohol an any form is probably going to trigger you badly.



Caseyjoenz said:

I am three months into this and I am worried. I'm 41, have a wife and four kids, a railroad engineer (which is possibly the worst job to have with TN type 2). I am going on vacation this week with my family to the lake...pontoon, sun, fishing, swimming, etc. and I am sure I will not be able to do the things I did last year. I have been shopping for the largest brimmed (read: dorky) hat possible to cut down on the sun and wind. Totally frustrated with the whole situation...TN is taking a huge bite out of my life and I'm pissed that I know more about it than my doctors do. Gabapentine...not impressed. OK, rant over. I hope you guys have better luck than I'm having right now... *raising my vodka lemonade to you all*

47

I’m 7 months into the worst of it and diagnosis. I always thought I had a high tolerance to pain or at least discomfort. This has brought me down. I’ve stopped crying quite so much now as the meds are taking care of the worst of it. I have type 1 and 2 bilateral. Only type 2 on the right. The left side is the big problem. I’m not sure if I’m dealing with my emotions very well. I mostly avoid talking about it now because nobody understands. I feel mad at everything people say to me about it. Like they know what I’m going through because they had such and such. I know my pain doesn’t make theirs any less though. I’m trying to do most of the things I would have done before, if I can. I smile and nobody knows. I’ll cry when I’m alone though. I miss my memory a lot. The meds just take away my short term memory. I make stupid mistakes and I have to hide it at work. I don’t want anyone to know I’m on meds. A combo of oxcarbazabine, gabapentin and lyrica for me. I miss running. I’ve always been a runner. I usually can’t muster it now. I miss making big dinners for my big family. The meds make me lazy. I have a big life at home with lots of work to be done. It’s harder than ever. I’m worried I will have to take another leave of absence from work. I am barely getting by. I reduce the meds to function at work and take more on my days off. I can’t afford not to work. I’m not sure about my long marriage. I’m putting all that aside for now. I’ve always been a joyful person before this. I have a lot to be thankful for. That’s for sure. I don’t want to lose myself to this. TN is all I ever think about anymore. It’s the pains fault. I’m practicing self hypnosis and mediation from YouTube to help. I wish I had learned some of these techniques years ago. It’s hard but I’m going to keep practicing. I feel better since I’m whined and complained. I think I will try to run tomorrow.





*I raise my glass of wine to you caseyjoenz

Thanks for listening all.

48

Brain things help me. puzzles, games, doing things with my hands and head.

Facebook games, grooming my dogs, jig saws. I May get a keyboard and try that again.

Craigslist, here I come.

49

I cancel a lot of things too. I tend to isolate myself a lot. I hate work since I had a pretty bad flare up and had to hide in another room and then miss work.I have some kind of pain most of the day and have pretty much come to terms with it, but when it starts to get worse I get in a bad bad mood. During a really bad flare up I just scream, curse, and sob.

50

I've just been reading this discussion again and I know what you all are talking about with the memory issues. I could not even get up to a therapeutic dose of gabapentin (and it was being titrated ever so slowly) because I could not even complete a sentence, let alone remember the previous day. I had random, bizarre thoughts (including suicide) and thought I was losing my mind. Fortunately I realized that this was not the drug for me. I know it does help many people...and I envy them because I have yet to find a drug that helps me and does not give me intolerable side effects. It's been a totally horrible, horrible experience for me!

51

Well I like Ashbet have ATN, continual 2- 4 -5 pain. Only relief I get is with the opiods. I struggle with the pain for a few days, then take the drugs. Ah blessed relief. And at this stage I often feel some amount of anger..... I take the drug and I feel 'normal', and then get angry that so much of my life is just plain suffering. You never get used to the suffering, you just try to cope or not cope hour by hour. No long term plans, or goals. Everything is almost hour by hour. I have no social life to speak of, and treat the few hours work I do a day as diversion therapy!

Acceptance of the situation rather than resistance - if you expend energy fighting it, denying it, you'll just tire youself. Try to move from the "Is this my life?????" to "This is my life". Engage with it. I rotate thru many psychlogical techniques - over time they all wear out so you need to recycle them. Meditation, mindfullness, cognitive behavioural therapy...... all basically a distraction from the pain ..... for a short while as you intellectually engage with it.

My most common mode to manage the pain... lay down and sort of sleep. I go into a sort of stupor for an hour or two.... and at least the pain is not foremost in my consciousness.

PLeasant engagement leads to distraction: if I can find some thing to mentally stimulate me it will displace the pain somewhat. Mainly means a TV / DVD movie or something I've recorded from TV. But it really has to be an intellectually engaging show (and not too long!) before I can get into the "zone". I usually disconnect the phone at this time. Everything I watch is prerecorded... I now have a low frustration tolerance and cannot tolerate the ads! ( I can record 4 shows at once... says someting about my viewing habits.)

This site helps as I can see others have the same and worse problems. I just don't have the mental energy to engage with it as much as I would like. I'm usually just too stuffed to do anything but vegetate. Not Again talks of feeling like a hermit... so true. I have to watch I don't turn into a complete recluse.

A thing that helps, and don't laugh, I'll order something off the internet, say a movie, and there's a nice feeling of anticipation that I can maintain while waiting on my delivery....

52

Memory seems to be a huge problem for many of you.. Like you I'm struggling with memory issues.. My pain is under control, for that I am so grateful, although I have to be very careful with the cold and stress. But my memory.. Wow. I've never had the best memory in the world, but these days I struggle to remember things that happened earlier in the day, things someone told me, tasks I have to do at work, my brain seems to have slowed down. I even have trouble remembering to take my medication (I easily forget how many doses I've taken, so I use mobile phone reminders to help me). Of course, I don't really know how to explain this to people so I try to cover it up as much as I can...

53

At this moment in my journey...i am living a, relatively, pain free life. Over the past year, with the help of two different doctors, and really good best friend, i've gotten my medication combination worked out. As long as i stay on schedule, i am pain free most days. Of course, there are some days that the pain comes back, such as when i have my period. (sorry, indelicate to mention that, i know).

The price that i pay for this pain free existence is that i'm a complete babbling, dope up, idgit most of the time now. I'm always sleepy. I have trouble with concentration. I have trouble speaking sometimes..i'll either forget the word i'm trying to say or complete nonsense will come out of my mouth. My typing ability as suffered greatly. I used to be able to type an accurate 70wpm, now with the hand twitching and inability to spell right anymore, i backspace almost as much as i go forward so i do good to hit 35wpm.

So, all of this has led to some extreme emotional ups and downs. I wasn't dealing well with the pain, I've mentioned in other posts here that there was a point that i was actively considering suicide. That is true. I was making plans and moving toward carrying those plans out. I was in so much pain. Even with the initial diagnosis, and the start of medications, i was so depressed. The dr told me TN never....never...really goes away. That it's a life long condition. I would think of how horrible it was going to be to live with this for another 50 years. FIFTY years....that's a long time. Those kinds of thoughts were leading me to kill myself. I am a strong person, but every one has their breaking point...and that was mine.

Anyway, a couple more trips to the er and more medication-fiddling with the doc and things started looking up. i tabled those suicide plans (but they are always there...just in case. Even now)

As things got better with the controlling of my pain, and finding you guys and knowing not only was i not alone, but that my fight with TN didn't seem nearly as bad as others here (horrible to say i guess, but it's true. Sorry.)...my outlook on life began to improve. I also discuss the depression with doc, and he prescribed some MORE pills for that. And i began to feel a little more "empowered" and began to feel up the challenge of dealing with this.

As things stand now on my journey.....i've got good support at home in the form of a loving, caring, understanding husband..i've got good support from my best friend who has agreed to be my doctor liason and who now goes to my appts with me and helps with dealing the all the mess of that. I've got a place to come to when i need to be reminded that i'm not alone and that things aren't as bad as they could be..., and i finally seem to have found a combination of medicines that is working.

So, for now....i am in a good place, emotionally. I am coping well with both my "crazy" med as well feeling really able to handle living with TN. I am even happy most days now. I am living a relatively normal life, with only occassional reminders that i have TN. I am no longer giving active thought to ending my own life. Most days, i am thankful to be alive. Really...i often think how grateful i am that i'm still here. Standing on my porch in the early morning, looking over my flowers and plants and watching the bugs flit around, while i drink my coffee...I'm smiling. Which is a big deal in and of itself, right? There were times that just smiling would be so painful that i'd nearly fall to my knees.

Now i just take things one day at a time and don't let my emotions get out of hand. I learned to do that things where you only live in the second you are in. Are you in pain THIS very second? No....so just let it be. Deep breaths and letting go.

~Mistee

54

" Most days, i am thankful to be alive. Really…i often think how grateful i am that i’m still here. Standing on my porch in the early morning, looking over my flowers and plants and watching the bugs flit around, while i drink my coffee…I’m smiling. Which is a big deal in and of itself, right? There were times that just smiling would be so painful that i’d nearly fall to my knees."

@Mistee, thanks for sharing, it IS a big deal, Living with TN is a journey of Ups & Downs…and your story above really reflects that, and I think many of us can relate.

@Craig, so nice to see you, it’s been awhile, I appreciate your honesty and sharing how you try to cope and manage. Your suggestions are a good reminder on how we can change our thinking to better get by. Is funny you know, I do the opposite and spend way too much time on here (LwTN), for me being isolated and torn away from my job etc this place has been my social interaction. There’s also a sense of accomplishment I feel when I’m able to help others. Makes me feel useful, During a time when I feel useless…

@emil2y, I’m post MVD for my type 2 TN, I’ve reduced my meds from 3 to 1 and I’m still dealing with memory issues, word recall, and saying the wrong word in a sentence.
It’s super frustrating, I used to consider myself quite literate, well spoken, etc. it’s hurtful when people laugh and they do. It’s sad when those closest to me say “well your on meds, you forget that I told you…” When in fact I know they never told me.

I think it’s an ongoing thing this acceptance of how things are now and adjusting is a daily effort.

@Not Again, I had those same dark thoughts when I was on Gabapentin (neurontin), I got off those pretty quick too. Funny how these meds affect us all differently.

THANKs to everyone who has replied to this thread so far and shared so honestly …
(( hugs )) Mimi

55

Terri - You are fortunate that you are still able to work. All the meds interfered so much with my ability to think that I was forced to leave my job...it would have been unethical and dangerous for me to continue in my field of healthcare as an anesthetist :( Even now that I am no longer taking those particular meds and just using pain meds, I still cannot return to work for the same reasons.....plus I would never pass the drug screening. I stay at home mostly...because I am not supposed to drive either. Even though the drugs don't make me feel sleepy or "high"...it would still be considered DUI. I wonder how everyone else deals with the driving issue???

Terri said:

I cancel a lot of things too. I tend to isolate myself a lot. I hate work since I had a pretty bad flare up and had to hide in another room and then miss work.I have some kind of pain most of the day and have pretty much come to terms with it, but when it starts to get worse I get in a bad bad mood. During a really bad flare up I just scream, curse, and sob.

56

I’ve had TN since October 2012. It’s a horrible horrible illness as you all know. I’ve done different things to deal with the pain. But mostly I’ve had to sit still or lie still n breathe deeply through the pain. I found that worked for me.
I recently had the glycerol injection n am into my 7th week TN pain free. However I’m having side affects from it that is causing a lot of discomfort and downright pain and irritation. I’m seeing my neurosurgeon on Saturday so hopefully he’ll know what’s going on.
My support has mainly been through my friends and its with these woman that I’ve laughed, cried, yelled, and had what I like to call meltdowns. They don’t understand this illness completely but they do their damnest to be there.
I’m still on some medication and as normal I’m ‘high’, lose my words, have memory loss, have dizziness etc.
While going through the pain I never really considered just how bad emotionally I got. However after having the op, and not having anymore TN pain, I had to deal with the emotional aspects of this illness. It’s never ending and sometimes I just have to shut down and try to not think about how it’s affected my life. I’ve decided to get on with my life but its hard when things are not completely good. I feel that sometimes I have to try to pretend to other people that everything’s ok as because the pain I have is invisible people don’t understand. But I’m about to start counselling to discuss my own emotions as to be quite honest with you all I’m actually really angry that I’ve got TN and I’m angry at how my life has changed and the uncertainty that has come from this.
I’m angry that I still can’t touch my face without having some pain even after having an op. but I’ll get there in the end.
It’s hard and it’s hard to stay positive but I’m trying.
Marcie

57

Oh Marcie - I know, I know. It IS very hard to stay positive. So happy for you that you have had some pain relief though. And it sounds like you have a good support system. Consider yourself fortunate! I have no support system. My sig other has just thrown me away (after 30+ years) and I have no real friends where I live now. It's so hard to make any new friends, because no one understands this "invisible" disease and how it affects you, and causes last minute cancellations & moodiness, etc. I am going to counseling too....it helps because at least she is an impartial & non-judgmental listener. And I think feeling angry is normal.....just part of the process we must go through. It's actually one of the stages of grief. I think we must mourn the loss of our pre-TN lives! Good luck to you and hoping you're having a good day.


Marcie said:

I've had TN since October 2012. It's a horrible horrible illness as you all know. I've done different things to deal with the pain. But mostly I've had to sit still or lie still n breathe deeply through the pain. I found that worked for me.
I recently had the glycerol injection n am into my 7th week TN pain free. However I'm having side affects from it that is causing a lot of discomfort and downright pain and irritation. I'm seeing my neurosurgeon on Saturday so hopefully he'll know what's going on.
My support has mainly been through my friends and its with these woman that I've laughed, cried, yelled, and had what I like to call meltdowns. They don't understand this illness completely but they do their damnest to be there.
I'm still on some medication and as normal I'm 'high', lose my words, have memory loss, have dizziness etc.
While going through the pain I never really considered just how bad emotionally I got. However after having the op, and not having anymore TN pain, I had to deal with the emotional aspects of this illness. It's never ending and sometimes I just have to shut down and try to not think about how it's affected my life. I've decided to get on with my life but its hard when things are not completely good. I feel that sometimes I have to try to pretend to other people that everything's ok as because the pain I have is invisible people don't understand. But I'm about to start counselling to discuss my own emotions as to be quite honest with you all I'm actually really angry that I've got TN and I'm angry at how my life has changed and the uncertainty that has come from this.
I'm angry that I still can't touch my face without having some pain even after having an op. but I'll get there in the end.
It's hard and it's hard to stay positive but I'm trying.
Marcie
58

@Not Again...re:driving.

I had gotten so used to driving while in pain. Just tears streaming down my face while i drove...that suddenly only having to deal with sleepiness and a little dopiness seemed great. Looking back, i'm sure i put myself and the other drivers in danger when i was undiagnosed/unmedicated.. simply because you can't focus driving like that.

when i first started taking the tegretol...i was almost certain i was not going to be able to drive, but well..i got a mortgage and kid and i am the primary wage earner. So....i just drove. It was very scary at first. i KNEW i was not doing well...but i really forced myself to stay focused and it got easier after a while (as did living with the side effects)

Nowadays..with all the drugs i take, it's a little different. I am very alert and focused in the morning..and can drive well, but by evening, when i'm getting off work, i'm almost a zombie. Luckily, my brother works at the same place i do and i'm his ride, so most nights i let him drive home. There have been some evenings, that i simply would not have been able to drive myself home. It's one of the reasons i agreed to (finally) let my husband force a cell phone on me...so that i could call if i couldn't drive.

I just take a good and honest look at how i'm feeling and i know whether i really can (and/or should be) drive. If i know i really can't, then i don't. but most of the time, i can force myself to stay focused enough if i have to.

And the radio up loud with songs i can sing along to always helps!! lol (mainly because it helps me appreciate the joy that is singing)

~Mistee

59

Wow...that is scary. What meds do you take? I could not take meds and work at my job as an anesthetist....it woud be unethical for me to put other people's lives at risk by my care.....and I would not be able to live with myself. Although I know there are healthcare providers that steal drugs and still work, it's unethical (and against the law) and contributes to medical errors. What worries me about driving is what happens if there were a car accident? Would you be guilty of driving under the influence? I was told that it doesn't matter that the medications are prescribed.....they are still considered major CNS depressants and your brain is "under the influence". I am not willing to take the chance that I could potentially lose everything I have worked all my life for. Fortuately for me, I had a very good private disability policy, in addition to one from my employer. I crabbed everytime I paid the private premium, but I am oh-so-glad now that I had the policy...otherwise I would be in the poorhouse. So financially, I am OK (although now I am of the age of retirement)....but I feel like a hermit. No friends anymore....don't go anywhere because I can't drive and I never feel well. I try not to think about it because I just cry. So I sit at home and do crossword puzzles and try to read. Can't do it very long though because it makes my eye start to hurt.

60

Since we are on the topic of work and driving and crying I’m going to take advantage of this space and write about what happened to me yesterday.

First a little background. I married young, 18, have two daughters, a newborn grandchild, and stayed in the marriage 30 years, moving all the time to support my husband’s career which was in boom and bust construction in heavy industrial (oil and gas, pipeline, mining, etc). Along the way I managed to squeeze in a bachelor of fine arts degree and began writing. When the marriage ended 11years ago I got the little house on the island I live on and a very modest monthly support agreement. He got a whole new life complete with new wife and her big family plus was going into the biggest and most successful earning years of his life.

I had fibromyalgia during the marriage. I quietly lived on my island managing to write a big fat literary novel that was published to good critical acclaim but made no money. I have amassed a body of art work I’ve been doing for the past seven years. For a couple of years I worked part time do floral arrangements for extra cash. Then boom, almost four years ago I woke up in the middle of the night with deep piercing pulsing ear pain. Now the story will get familiar to so many of you…the medical quest, the tests, the doubts, the medication trials and errors and the building pain and desperation. For awhile I thought I was not going to be able to live a viable life.

Then another boom, my ex husband went to court in another province and without me even being there had our separation agreement adjusted to not enough for me to live on. I have been in legal hell ever since and drained what little nest egg I did have.

Yesterday I was deposed by his lawyer and went through five gruelling hours of answering questions about my illness with all of my GP clinical notes as well as letters from specialists laid out for all. When we broke for lunch I got very tearful. And for the two hours after lunch I wept the whole time. It took all of my brainpower to answer the machine gun fire questions so there was nothing physically except the tears. I don’t know what held me up but I stayed sharp despite the load of gabapentin and tramacet. Near the end of the interrogation the opposing lawyer asked me if I’d be willing to get the records from MSP of every doctor visit I’ve had in the past seven years. My lawyer asked why she would need it considering my whole medical life was laid out before them like a corpse. The opposing layer swept her had up in the air and retorted because “this woman” has seen so many doctors, who knows what she is hiding.

It took me a few seconds of processing but I looked that opposing lawyer straight in the eye, my tears flowing quietly, and said, “I’d prefer you’d call me Karen and NOT this woman”. She checked herself and said,"yes, I apologize, and thank you for allowing me to call you Karen."
Of course all of this is being recorded by a court reporter. My lawyer whispered, “nice catch.”

That was the end of questioning for me and I was in so much much pain at that point I announced that I was leaving and did not stick around for my lawyers turn to depose my ex. I went to my car in the dark of a parking garage and wept and wept.

I called my daughter in Montreal and just asked her to tell me about her day and just to let me cry and not ask about it. She was lovely. Then I went over to my other daughter’s place and we took the one month old out for a long walk. The only thing to stop my weeping all evening was to hold the baby.

I am house sitting and was supposed to go back to my own house up on the little island last night but do not feel competent to drive. Spending the day in bed reading and weeping. Don’t know if it will ever end…

Thanks to anyone who reads this.

Peace and Happiness
Bellalarke