Roll Call Time! Do you work? What do you do for a living? How do you cope with your job?

41

Thank you! and yes it is hard, and I just get so sick of explaining myself that I just feel like acting like everything is fine is sometime easier, but not allways possible. Two weeks ago I had all temperaries put on my top teeth and there is a noticeable diffrence in my smile, but the pain the comes along with going to the dentist is very hard to hide...

Seow W said:

Hi Sarah,

I take my hat off to you. You must have a really hard time dealing with people, with all the teeth pain and face pain you have. Sometimes, it is easier to simply said toothache or headache than to explain having bad ATN attack . People may not understand the intensity of pain even after a lengthily explanation , and have to bear with more pain in the process . A bad migraine and some body language will do the trick .

Take care!
Seow
42

Hi Sarah,
I would describe that as ‘bitter’ smile when your pain is terribly bad. People may wonder why , they sense that something is wrong. Yet , it is difficult to put across to them how much pain you have, so it is no point explaining, unless they are someone very close to you. I feel better when my family and friends show concern and have kind words .
Seow

43

I thought I would just say that I had my first day back at work after about a month off due to diagnosis then medication sorting out (still not sorted!) and I had bad pain, worse than I have been having at home. I think it was the airconditioning on my face especially walking down the corridors :( It's so disappointing, hopefully I can get meds sorted and it won't be a problem like today :(

44

Oh, Porcelina, I know that "corridor" pain far too well. A/C was my demise at work and when I was flared up (which was 90% of the time), just the breeze created from walking down the corridor was horrid. I'm on unemployment now. My doctor will not even consider helping me with disability. I hope you can get your pain level down with the meds. Lamictal and Vicodin worked for me quite well. Problem with that was my mental focus was not so good. I was a instructional/technical writer with unrealistic deadlines and long hours. Best thing to happen to me was losing that job!

Porcelina said:

I thought I would just say that I had my first day back at work after about a month off due to diagnosis then medication sorting out (still not sorted!) and I had bad pain, worse than I have been having at home. I think it was the airconditioning on my face especially walking down the corridors :( It's so disappointing, hopefully I can get meds sorted and it won't be a problem like today :(

45

I think I would shrivel up and die if I couldn't work! I had very bad postnatal depression after my first child and a lot of it was because I had no job, I went back to work and got a lot better. I feel useless enough as it is and not contributing financially would make me feel worse. It's just the way I am programmed I think. If I really have an issue with aircon despite meds in the end I think I'd get a community job rather than in a hospital. Though it remains to be seen what will happen this winter on my face (being in the southern hemisphere it's already getting cold in the mornings)!

46

Being unemployed has been both a blessing and a curse. I have a 'thing' about money and control. I was married before and made the same amount of money as my husband. Then I quit my job to stay home when I had my first child. I was home for 6 years. I loved being home with my children but I felt I had no control in my relationship with my husband. Then we moved across the country for my husband's job. Within a few months he left me for a much younger co-worker. It devastated me. I had to start over with a 4 year old and a 6 year old in the middle of the county where I knew no one. I swore I would NEVER be that powerless again, EVER! Several years later I married again to a wonderful man who made less money than me. It's been perfect -- he's sweet and giving and I've maintained the feeling of control. Now I am not working and I feel uneasy without that control. I am doing his books and handing all the money, but it's not MINE. It helps that I saved a good amount of money when I knew my job was in jeopardy and I still have that. I won't be able to stay home forever because I have to provide our health benefits since my husband is self employed. All in all, 90% of me dreads going into an office again, 5% wants to because of the control issue, and 5% is undecided. I'm sure those percentages will change once my savings run out!

47

I can sympathise. Both my husband and I took out student loans, he to be honest frittered it away and didn't come out with qualifications that were worth a lot ... when I was single I earned good money for a single person and loved it. Being a nurse here you earn fairly decent money, more than the average person. So I have a degree (I have more than that, a postgrad diploma and have done all of a masters up to the point of needing to do a thesis) and he doesn't. And he earned $20k less than I did. Then he got a job that we moved for, he now would earn $40k more than me if I was full time. So even if I worked my butt off I still wouldn't earn as much, and I have a degree (and yes, he does rub it in now and then). I only work 36hrs a fortnight (1x 12hr shift one week though I am away from home for 14hrs, 2 the next) to supplement the mortgage and the rest of the time. His student loan because of his salary will be paid off this year. I still have thousands owing. And over here there is a retirement scheme most people have ... a certain percentage of your pay goes into it and your employer contributes some too. By the time he reached retirement age on his salary he will have around a million dollars in it. Because I have stopped work at times and worked hardly anything at others I have next to nothing in my fund. So really, I too sacrificed everything financially for my kids and if he left me I'd still be in debt and have to work my butt off for the rest of my working life to get any sort of retirement fund. It's something that hangs over your head a bit.

48

Yes, we promised our daughter we would make sure she got through college (she did great, got a great job) and now the loans are due. Well, before the TN even started, I lost my job and have only found parttime work since then. Trying to pay about $100,000 of loans while only working parttime and trying desperately to save our home (its in short sale). Then with medical problems, then the TN starts. And the medical bills. Oy. It is never a dull moment, that's for sure. Fortunately, while my husband doesn't make a great deal of $, he does have great health care, so I thank God for that.....

Porcelina said:

I can sympathise. Both my husband and I took out student loans, he to be honest frittered it away and didn't come out with qualifications that were worth a lot ... when I was single I earned good money for a single person and loved it. Being a nurse here you earn fairly decent money, more than the average person. So I have a degree (I have more than that, a postgrad diploma and have done all of a masters up to the point of needing to do a thesis) and he doesn't. And he earned $20k less than I did. Then he got a job that we moved for, he now would earn $40k more than me if I was full time. So even if I worked my butt off I still wouldn't earn as much, and I have a degree (and yes, he does rub it in now and then). I only work 36hrs a fortnight (1x 12hr shift one week though I am away from home for 14hrs, 2 the next) to supplement the mortgage and the rest of the time. His student loan because of his salary will be paid off this year. I still have thousands owing. And over here there is a retirement scheme most people have ... a certain percentage of your pay goes into it and your employer contributes some too. By the time he reached retirement age on his salary he will have around a million dollars in it. Because I have stopped work at times and worked hardly anything at others I have next to nothing in my fund. So really, I too sacrificed everything financially for my kids and if he left me I'd still be in debt and have to work my butt off for the rest of my working life to get any sort of retirement fund. It's something that hangs over your head a bit.

49

Thanks for replying, both of you. Isn't it amazing that one stupid little nerve can have this much affect on every part of our lives? My husband had knee surgery a couple of weeks ago. He was laid up with ice and painkillers for a few days, but every day got better and now he's up and working as usual again. I find myself jealous.

50

Seeing what other people go through without any health insurance makes me want to cry. I don't have any (wish I did now!) so I pay full price for seeing a family doctor, however hospitals are free here and most medications will cost you only $3 to fill a prescription (the government agency pays the rest ... there are some that don't have a subsidy though). Whenever I watch one of those shows Dr Oz does where he goes to free clinics in the US I bawl my eyes out at what people have had to put up with and not get any care without insurance. So I can be grateful I live here without insurance and not the US without insurance. (oh and our colleges are a lot cheaper than the US!)

51

I do not work outside the home but I got my hands full at home taking care of my 3 children and 2 of my nephews I have applied for disability and been denied twice but have hired a lawyer who thinks I can win the next phase but we will see. I haven't been able to find a way to cope with my pain enough to have a job outside the home.

52

Since I lost my job last year I've been doing the books for my husband who is self employed, which has been great ....except I HAVE to get a job for healthcare benefits before my COBRA runs out. I was an instructional designer/technical writer for years and never liked the job, just liked the money. Then the last place I worked literally pushed out everyone over 45. It was very ugly. I can never go through something like that again, EVER!

I really want to make a career change and have always wanted to be in the medical field. I don't have the time or money to go to nursing school -- so I decided that I would enjoy being a Phlebotomist (person who draws blood). I think moving around and interacting with patients will be a better distraction from the pain than sitting at a computer by myself like I did before. I donate blood all the time and I would love to work at a blood center. Last time I donated I asked what qualifications are needed and you have to have an EMT or Medical Assistant certification in addition to Phlebotomy (they also prefer a year of experience but I will cross that bridge when I get there.) Soooo, before I could talk myself out of it I registered for EMT and Phlebotomy classes and paid for them on my credit card (ouch!) I start classes May 30! I just pray that I make it. Just being 58 years old is challenging enough, not to mention the ATN! I decided if I fail, I fail but I HAVE to try. My husband initially said I was crazy and tried to talk me out of it but then he said it's the first time he has seen me so hopeful in 4 years and is now 100% behind me. Wish me luck!!!

53

Hi Stef,

Remember, you said to me Gerry your motto is well…just super!
Simple words I know but you are now in my mode “Action Cures Anxiety”.Too simple right? But it WILL WORK, just keep attempting whatever as you try or may fail initially as we all do…but you will find peace in your efforts I promise you! I started my own business from inception when I was 39. Every day and every week I would look in the mirror and ask my self… Gerry did you work hard today…and…did you do the things that will eventually come to fruition for you? If I was honest with myself it worked, if I was lazy it did not!
Go ahead…put these words on your mirror, right now! Do it!

All the best, always!

Gerry

When I was 40,

54

I work, I am very fortunate they we own our own business. I am a manger , but have an assistant so when I am having more pains than normal and can't get them to calm I can push more work off to him. So far my husband has been very understanding, but it did take a trip to Shands in gainesville to help him understand why the attacks would come from no where and how painful it is even though you cant see it always.

55

I work full time & it's very difficult. I sent an email out Friday on an annoying co-worker that laughs & giggles 8 hrs a day 5 days a week. I've noticed when she isn't there my pain & anxiety is better. When she is there my pain increases as the day goes on with the frustration. I cannot wait to see wait HR has to offer. I've mentioned in the email I've spoken to 2 drs on this & they both asked if I went to HR & I told them I went to my manager & she said to handle it myself. I'm not the only one that is complaining about her. My plan is to reduce as much stress as I can to see if this helps this ATN.

56

Stef,

I feel for you, I really missed working...not just the paycheck, the social and emotional aspects of working and feeling worthwhile. Being home alone with pain all day is truly depressing.

I am an RN, however, I found it too hard to deal with the pain, side effects of the gaba and carbamazepine and the overwhelming exhaustion that comes from being in pain for the better part of my days.

So, now I do gardening...I take care of plantings beds and landscaped areas for businesses ie: the YMCA, movie theaters, professional buildings.

pay isn't that good, but it is a trade off for the flexibility I need d/t the TN.

Hang in there, you just do whatever you need to do to feel better. my opinion re; disability: go ahead and apply. If you want to work, while on disability, you are allowed to earn a certain, set amount per month before your payments get decreased or cut.

I know exactly how you feel about working, I feel useless and fidgety if I don't have a job. Our jobs are part of our identities and when ATN robs us of that, our self worth just crashes to the ground. Also, I feel almost ashamed, embarrassed about being on disability-I know I shouldn't but I just can't help it-the stigma of it is disheartening.

Re: endorphins, I do 40 min/day of cardio 6 days/week, I feel almost euphoric just after the workout-gotta love the body's own painkillers-enodorphins. But, I have my flares of the type 1 TN on days that I have a particularly grueling workout, it starts about 45 minutes after and it hurts so bad (its a 10/10), I cannot do anything but pace and cry. But the type 2 pain is very low, 1/10 immediately following the cardio.

Sorry this is long, I tried to be brief.

I hope you feel better and all will work out for you.

Jody

57

Hi everyone,

I work from home as a photographer but only bring in a few hundred a month. So thankful for my husband's steady job and medical insurance. I do get a very small amount from disability, too, so that at least helps a little.

Along with TN I have MS and extreme fatigue and other neurological symptoms that would make it almost impossible for me to work. The part I miss most about work is the people factor. I'm an extravert and a full week can go by before I see anyone other than my husband. I do take our dogs for a short daily walk and chat with people walking by, but that's about it. I plan on taking some type of class (cooking, photography, art) soon am am really looking forward to it!

Hope this is a feel good day for all of you. :)

~ Vicki

58

I am dealing with this issue right now. I used to work a 'normal' job until last summer when I started my own business. I was doing well until this pain began to affect everything and everyone around me. Business hasn't grown in months. Trying to figure out what I can possibly do to regain it and knowing I cannot possibly work a 'normal' job anymore is stressful. I'm sure you understand. I have been looking into disability myself. There is no way I will ever stop working in some way though, we shall perservere :)

59

I was a pharmaceutical rep for about 19 years, had that horrid 12.5 hour jaw joint surgery that started my atypical TN 24/7 pain. I tried to go back to work 6 months after surgery, but only worked 6 weeks and was back out of work. I couldn't handle the hours, the driving (fall asleep at the wheel or be in so much pain that I'd have to pull off the road and nap at a gas station/church/hotel/ etc.). I have been unable to work because of the 24/7 pain. I wish it was intermittent. I think might can handle it but the chronic pain is killer. I cannot concentrate and end up just going to bed and things pile up. I hate that because I'm a little on the type A side but I've had to learn to stop and just let things go. I got an agency, Allsup, to help me go through the Social Security disability process. They were a wonderful help. I couldn't have done it without them. I have no family help. I did sell my house, Steph. I wish I had refinanced and kept it. My mother talked me into moving in with her and that did not work out at all because she didn't understand pain. Now, she has left me without a home and I'm looking for an apartment while living with a friend. I hope you can refinance, find a job that pays enough to make ends meet or something. I have not found any meds that work for me. I've been through alot of them. A trigeminal nerve block only lasts about 6 hours! The duragesic patches only last maybe a day and that's still at a pain level around a 6. Clonapin does work a little at 2 mg but I do get sleepy. I've tried all of the neurontin, lyria, tegretol, baclofen, doxepin, effexor, cymbalta, elavil, trileptal, radio frequency ablations (4), sphenopallatine ganglion nerve blocks, ...nothing touches this pain. It' in every tooth, gums, lips, chin, tooth roots, palate, tongue. I'm down to 98 pounds because I'm on a soft food diet and cannot chew. Ugh. Ideas anyone? I'll have to read about Carol's interview. Elstep, where did you find it? I'm a single mom, too, supporting a daughter getting a PhD. So, yes, money is tight! I pray that I either get a MVD that works (I too had an MRI that shows prominent vascular loops touching the right trigeminal nerve but the docs are afraid to do anything thus far. Maybe I haven't found the right doc.). Thanks for your stories, good or not so good. Someone out there can offer some advice to us that we find helpful! So, thank you when that occurs!

60

I have enjoyed revisiting this post here. I've not had a chance to read all of your entries yet, but I thank you for your input.

I asked this question when I was pondering going back to work. I did, this past May, accept and begin a job as a Mortgage Loan Closer. I was sure of myself, at first, with 10 years experience in the field. But, now, I have to keep telling myself, "you can do this", everyday.

My boss already got on my case for nodding off in a couple of meetings (a side effect of Methadone). I told her that I had "Trigeminal Neuralgia" and that it may be a side-effect of my medication. I doubt she has any idea what that means. She just asked me what time of day I took my medication.

I have an hour long commute both ways. The summer heat and drowsiness makes the drive almost insufferable some days. But, if I catch myself getting sleepy, I pull off the road or actually slap myself to stay awake. I don't want to go to jail for DWI, or worse injure someone else while driving. You see, Methadone, the only thing which has had much success with managing my pain for a long time, does not make me feel intoxicated. However, whenever my mind is able to go on "auto pilot", so to speak, I feel a tendency to want to nod. It is normal for people who have to use Methadone.

Many people use this med as a substitution for drugs that they are addicted to. It's only become more widely used for pain patients recently. It's growing more common to see it prescribed for pain.

I've come to hate my medications. I do not like being dependent upon anything, but it's better than the alternative of mind-bending pain which leaves me unable to parent, or work.

My job is grueling, detail oriented, meticulous and fast paces, in other words, extremely high pressure. Sometimes, I feel as if I will have a heart attack from worry that I'm not performing well enough. I've already lived the day I get fired, what my boss may say, in my mind, probably 100 times. I don't know if that will happen. If she would give me a fair chance, I would be a true asset to the company. But, my training has been sketchy. She went on vacation and relied on other employees to train me. One man shows me compassion and helps me very much. But, what is their incentive to train me? I don't know what my manager is thinking. I keep hoping that I can make her see me as a human being. I try to make casual conversation with her sometimes.

Honestly, to have been out of the game for 3. 75 years, and returning now, I've caught on extremely quickly to the plethora of changes in guidelines, not to mention the particular isms and ways of ops in this particular office. I've had to fend for myself, a great deal, to gain the knowledge I need to do my job correctly. Now that it's piecing together, I must work on speed.

All of this, I do with a condition which requires me to take medications which drain my strength and health to remain competent to do anything. I do it raising two children and trying to maintain a marital relationship. I do it with breakthrough pain. I do it with two hours of driving in the summer heat per day. But, so far, I'm still doing it. I'm giving it my ALL! My family is depending upon me! We will lose our home if I fail.

If only my manager knew what I was going through, she perhaps, would not be snide. For now, I keep a smile on my face and keep on trying my hardest.

Reading many of your entries tonight made me feel so much less alone. Thank you to everyone who has replied to my post. I hope I can eventually get around to reading them all.

Good luck in your endeavors whilst managing with this perplexing and life-changing disease. May you excel in whatever it is you are doing, despite the stumbling block thrown in your way that only those who have it could possibly understand.

I not a preachy Christian, but I must say that I give God the glory for even getting this far. I pray all of the time that he will guide and direct my steps. I take it one day at a time. I hope that I can train, get fast at what I do, and succeed again. The expectations of me, and all of those in my department, are very high. I am on track with my training, about where I would expect myself, or anyone else in my situation, with or without ATN, to be.

Best regards to all of you here, and may you find the healthcare that puts you on the road toward, or back toward being the person you want to be both privately and professionally.

Stef