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

21

I work as a professor. So far, I have done ok mostly by trying to change my workload and so far my employer is pretty happy. I think it's taking a long-term toll on my career -- not doing stuff that I should be doing like networking and publishing because it's a huge effort just to keep it together. And of course it has totally changed how others see me, particularly when they don't know what my issue is.

I worry a great deal about being in too much pain to do something I absolutely need to be able to do (teach, give a talk, travel, make a presentation). I can do fine with opioids, but I don't always have enough at the end of the month and spend lots of time worrying about what's coming up on my work schedule. Right now I'm on a week-long work trip and I'm out of meds because out of town on my refill day. I don't get withdrawal symptoms, but if the pain gets really terrible when I'm on the road, it's so difficult.

Where I've gotten into serious problems is with medication side effects that are disabling for the work I do. For example, had severe memory issues with tegretol and could not make it through a single day of my job like that (no, I don't have anything like that with opioids). Then the discussion is about whether I need to change my job to be on that medication (which also doesn't do much for my pain). Not sure that's possible -- either I'm more sensitive to some of these side effects or they're just a big problem for the kind of job I do. But I suspect that it's a big problem for many kinds of jobs, and maybe some neurologists aren't sympathetic to it because they think only being a neurologist is the only hard/important. I'm generalizing because a lot of them are very, very kind, but it seems like some of them imagine that our jobs are much easier than they actually are.

I feel for people who don't have paid sick leave like I do. Really important to know and make use of your rights -- I would suggest NOT revealing your illness in job interviews, for example. You deserve to work and support your family, and this is the reason we have protections in the workplace, unions, etc.

Mac

22

Hi Stef — I am a graphic designer and I also have ATN. I just took the last month off to recover from my MVD surgery and am starting work back up again full time on Thursday and I'm a little bit nervous about it. I am self employed and luckily am able to work from home. However, its not all it's cracked up to be. I really started going down hill about 6 mo. ago. The meds make me so tired and so stupid I really was doing a terrible job at my work and it was totally noticeable. I am still on medication, but am slowly weaning off. My plan for being back at work is to really give myself a break. Go to bed early, stay hydrated, eat well and often, and take breaks. Take a little nap if needed or when I really feel like crap, just get up and move around. Not trying to power through it. I've been taking baths every night and that has really helped me sleep well and feel calm and relaxed and pain free. I've also started journaling my feelings about all of this and I think that has mentally helped me keep it together so when I go back to work I can just focus on my job and not my face. Good luck to you. Cheers, Jessica

23

Hello Stef,

I was one of those people who couldn't make up her mind what she wanted to do. I was a Medical Assistant, Medical Records Director, and lastly Social Worker. I just kept going to school earning more degrees. It's funny is those degrees don't do squat for me now except collect dust.

I have been out of work for 3 years. I have been on disability for two. I have a multitude of other health problems that the Type II TN have just added too. I was very lucky in the fact that I applied for disability in December and was approved in February . It was a very short process for me. I didn't even have to go see the Social Security Psychiatrist. They had all my medical records for only 2 years instead of 5 because there were so many and I had to do a survey of my activities of daily living.

I wish everyone with TN who apllied got approved as fast.

I just stay home now. I wish I could work like I did before but my doctors said they would never release me for that type of work. They told me People Greeter at WalMart was my best hope. SERIOUSLY?? I have accepted this now and just go with it now.

LaLa

24

I do not have any disability or other welfare to lean on for TN and sometimes it is quite impossible to work normally . My speech is slurred because talking causes searing pain along my jaw .I can’t even answer the phone call as any vibrations from it triggers fresh pain. It is frustrating not be able to communicate with people. Paper work and strenuous work also give me problems. During this period I need to stay at home. Medical leave is limited to 14 days per annum and unpaid leave is usually not approved for TN. Therefore I started a new career that enables me to work from home. I have complete control over my time. There is less stress working my own way.

Stef - you sound to me a very capable and strong lady. I am sure you will find a way to earn enough to keep going, perhaps more . Who knows?

25

I work at home as a medical transcriptionist; however, a car accident and the inception of EMR medical record systems are constantly changing my job and phasing out my jobs. I lost my very good full-time job in January of 2010 (typed about 12 hours per day) and have only found part-time work since then. The government has changed so much about medical records, that people like me really have very few chances of working in the field we are trained and proficient in. While it is killing the budget, and I'm making about $3500 less a month now, I do have some part-time work that I'm thankful for, especially now that I'm suffering from TN and facial pain, and just feeling lousy most of the time. I don't know if this will end up setting me up for disability between this and my neck injuries (four neck fusions) or what will happen. We are kind of in limbo. But I love working. I love typing. I love contributing, feeling important, like I still matter and what I have to do and say is important. So I pray I can continue to do something. It is so much easier to cope with pain when your mind is busy, and you have challenges and a reason to be. When you don't, it's easier to throw in the towel and focus on the negative. I am hoping that once things die down with the TN (please God), I can get a medical office job nearby that is more consistent pay and hours. We'll see how things go with my treatment. Stef, you seem like a strong woman. I will keep you in my prayers. This disease sucks and nothing is easy with it.

26

I work for a large DIY store.I've been there for almost 7 years.I've had several occasion where I could not work but I didn't have a diagnosis.I still don't have what I call a propper diagnosis.My boss has been very good about it.I'm lucky that he has someone in his family with neuragia(different type)So he kind gets it.No one else I work with gets it.I have not had a bad bout of pain for almost a year but seem to have constant sore teeth burny ache in my face odd pains which come and go.kinda like I've sunk my sensative teeth into ice cream sorta pain.

Bosses come an bosses go in that company and he is "on holiday"! at the moment.I hoping that he will return.The next one may not be so understanding.

I have to say I am very fit and can hold my own against any in that store.It is a very active physical job.So They really have not seen how bad it gets.When that happens I'm not sure how understanding thay will be.I wark with a young girl with CF and they are great about it.But it is better known and she is young and liked by everyone.TN you can't see and no one has ever herd of it.

27

Its good to talk about it, I found someone else at work who has ATN. She has had it for 8 years but I never knew.

28

Hello everyone. I'm a pediatric nurse and my boss is being brilliant. I am only part-time and while I am getting my meds sorted she knows if I ring in sick I really am having a horrible time not just faking a sick day! She has offered me the option to go down to 8 hour shifts (we work 12 hour shifts) but I don't know if that's the answer as I live quite far from work and 12 hours makes it worth the drive.

Oh and last week when I had to call in sick I explained to the duty manager (most of them are nurses) and he said oh my god you poor thing I had that once. Was nice to talk to someone who understood!

29

Your lucky.My boss is good about it but no one ever seems remember there is a problem.

I just get so fed up.I don't understand this condition myself ,how can I expect anyone else to.

What is bugging me is the pain I've been getting daily is new,Been having it for about 6mths.I've been having face pain for donkeys years.(without meds)I have this urge to stop my meds(I only have 50mg of nortriptyline a day).Just to see what happens.There it this thought in the nagging away that if I stop the pain will go away.But logicly I'm fairly sure it probably wont!!? I'm not convinced this is TN.Am I in denial or is this not TN? This is mostly due to the fact that everyones symptoms seem to be different.

Just getting it all off my chest!!!!

Some days a worse than others.My doc keeps wanting to put me on tegratol.I have some she gave me in the cupboard.The side effects out weighed the bennifits.I said I'd try it if i have a major attack.Its just a underlying nagging, endless,grinding burning.uuuuuuuuuuuuuuuugh!

I think it will take me stopping the nortriptyline to convince me that i actually need it.

Any thoughts anyone?

30

Trouble is you can't take Tegretol for any sort of relief for an attack, it takes at least 3 days to get any effect :( It's something that you have to slowly amp up and ramp down again.

31

oh wow really? These meds are all new to me. So I guess all the meds are like that right? You have to build them up for them to be effective? There isn't anything for "relief" from attacks right? (not that really work?)

32

I work 2 weeks on and 2 weeks off in a hospital by completing the financial statements each month. I feel very fortunate for several reasons. I have worked there for over 20 years and have a disability plan and long time understanding supervisors and co-workers. I am on sick leave right now as I am new to TN but if things don't change it will transfer to Long Term Disability. If I feel I can go back to work, it can start out slow and even after a year or more I can get my job back. The job is very intense and demanding. I am on Tegritol and there is no way I can function at my job. Due to my seniority I could choose a less demanding job, but certainly not at this point. I have 3 teenagers and am struggling to get meals on the table, to be awake and to be a mom.

I too wonder if staying at home deteriorates your health. I know that my confidence has dramatically decreased and just going into a store is overwhelming for me. As much as I have 'cabin fever' I am embarressed to go out in public as Tegritol makes me zombie like. I hate it when I have a procedure/lab test done at the hospital because I see people that I work around and a lot of them don't know that I am off sick but I can tell they wonder why I am different.

As much as we want to be a part of every day life and go to work, we are not the same people as we were before. The TN robs us of a normal life and what is the most frustrating is when people don't understand why. I feel so bad for all of you that don't have a disability plan and have to work. It is hard enough dealing with this condition, but to have to worry financially I would think would add a lot of stress that probably does not help the condition.

My thoughts and prayers for all of you.

Collette

33

You kind of have to experiment to find whats best for you. Some people find hot or cold helpful, some people find pain relief drugs helpful, some people just have to go with the pain and use distraction. That's probably not very helpful oops!!! :) Just have a look around and see what people say and try things. Most drugs that work on your neurological system (like anti-convulsants, anti-depressants etc) take from many days to many weeks to work.

typqueen said:

oh wow really? These meds are all new to me. So I guess all the meds are like that right? You have to build them up for them to be effective? There isn't anything for "relief" from attacks right? (not that really work?)

34

I am new to realizing that I have ATN (and my doc still has my Dx as only TN1) but as I learn more about ATN, the more sure I am that I have both. Right now I work full time and support my whole family (my spouse recently went back to school full time to get an MSW) and our son who is almost three. I am a hospice chaplain and struggle with working at all when my pain is bad. Pretty soon, however, I'm going to have to figure out how to deal with my exponentially increasing symptoms and the job requirements as they are not allowing for many sick days or much time away at all.

For the last two months my pain has been getting a lot worse. I now have pain across the entire R side of my face from the time I wake up (at a 2-3) till the time I go to sleep (at a 5-6). I have NEVER had trouble going to sleep at night, but these days it takes some work with not being able to sleep on the side I have always slept on anymore. I have many hours in between waking up and going to sleep where I have been at a 7-8 as well. That just doesn't allow for AT ALL effective working and I've recently had to go off of Topomax due to a huge loss of memory in taking the med. Now, my meds include Cymbalta 180/day (which they say is the nerve-pain appropriate dose), Zonegran 100 QD but my neurologist says he'll put up to 300 if I need it, Baclogen 15 mg QID and Nortriplylene 100 mg QD. I was on Tegretol for about 7 years and would go back on it if I need to, but my current neurologist hasn't suggested it. I was on Neurontin but decided I'd rather not continue it - but didn't write down why and now don't remember! Argh!

I periodically wonder if I'm going to end up needing disability before I turn 40 and can't stand the sound of that because I really want it all! I want the career, the family AND the health that now seems like a distant memory.

There is definitely a correlation between my stress level and my pain level. It seems that the pain comes from inside my head, as the vast majority of the R side of my face is completely numb - not just surface, but the depth of tissue underneath as well. The ONLY thing I feel there is PAIN, pressure and periodic burning, tingling twinges and electricity. The problem with these is that I never know if this means that more area is going numb, if it's going to be momentary or if it is the beginning of another TN1 attack.

However, a slight breeze, biting on something the wrong way or even turning my head so that it puts pressure on the skin can send it shrieking and stabbing as well. But, more often than the lightning bolts of pain is the intense pressure, feeling that someone is pulling on my face from the inside of my head. It is so bizarre to look in the mirror and see myself looking so normal when I feel such intense pain. I always feel like it should look like a bloody pulp on that side of my head (like I've been hit with a bat a few times) with a bulging eye but it never does.

Do any of the rest of you have the same numbness with a lot of pain in that area? Is that normal for ATN? Thanks for any insight you can give me.

Jan

35

Jan so sorry that your suffering so much. Such bad luck regarding the soft ball accident, (read your profile) I dont have numbness so cant help you there. I know you have been on a lot of meds already but have you tried Amitriptyline for sleeping at night. I have the same problem sleeping on my side but after taking this it makes it so much easier, I also listen to the radio as it fills my thoughts and also helps. I pray that remission comes back to you.

36

Jan, I am no doctor, nor do I play one on TV (haha) but if your ATN pain started after a softball accident, you may want to look up (post-traumatic); Trigeminal deafferentation pain, which could have been caused by your softball accident. The severity of your pain and especially having the numbness are symptoms of this type of TN. I suspect I have a light case of it in addition to my TN2 from a radiofrequency ablasion procedure. My pain became much deeper like it's going all the way through my head while most of the time the surface feels slightly icy-numb until my TN2 flares up and then I get the burning on top of it. My diagnosis is still TN2 but I can tell you I will NEVER have that procedure done to me again.

I know that feeling of looking in the mirror and expecting to see a bloody pulp! I get the sensation that someone has just sliced me with a switchblade across my upper cheek. I feel exactly like I should have a big, gaping wound there.

The only med combo that has worked for me is a combination of Lamictal and 7.5 mg. Vicodin (usually 2, occasionally 3 a day.) This combo allows me to feel like a "normal" person who can actually shop in the produce and dairy areas of the grocery store! woo hoo!

Your job sounds wonderful. I would love a job that has the reward of being of service to others like that (oh, and getting a paycheck, too.) I hope you can find the pain relief you need so you can keep doing it.

37

For the last three years I have worked in the office of a manufacturing company. I have delt with face and teeth pain the entire time. My roll in the company is customer service, but I like to think of my job as acting. Sad to say everyday when I drive to work I remind myself that these people don't know how I feel (even though I think they can tell by looking at me) I walk into work smile thrugh the pain, say hi to people and work hard because it helps me keep my mind off the pain and the depression. I put on an act everyday at work that I am just like everyone else when really the pain on my face has been so intense. When I am having a really bad day I just tell people that I get bad headaches or that I have a tooth ache, but I just don't for some reason want to use ATN as a reason for my preformance that day at work... I just feel like people wont believe be or understand AT ALL what I am talking about. Its just eaiser to say things they are more familiar with. I don't think this would work for everyone, but honestly I just fake like I feel good and just try to get through the day...

38

Hi Stef.

I love this discussion. I have enjoyed reading other people's posts as I have wanted to know what everyone here does for work and how they've adjusted to pain.

I was able to work for 2 years after my diagnosis. I had a wonderful job working for a non-profit group studying killer whales in Washington State. I worked on a boat, managed a database and worked a whole lot of hours. Unfortunately, the pain took over and I had to resign my position.

I have been mostly unable to work for almost 2 years. What I do at home on bad days... watch a lot of TV, do Suduko puzzles, try to do at least some chores each day... yep, not what I would call much of a life. I do get out socially on occasion. That said, I have started to slowly have some really good improvement.

I am now working for a girlfriend who owns a graphic design/screen-printing business. I work with her to help her sell her designs which are printed on t-shirts, bags, etc.. I will also be working with her to get her designs on-line and will help her manage that, too. The hours have been very flexible, but some weeks have been more than I can handle so I spend a lot of time in bed after working. My girlfriend and I are childhood friends and she fully understands my inability to work on a regular basis.

Last year, when the pain was more frequent, I decided to try out house-cleaning as a profession. I took on two clients who I cleaned for once every two weeks. Where I live, house-cleaners charge upwards of 25$ an hour so I figured that cleaning would be a good way to make money for minimal hours of work. It's really hard work and I soon discovered, as the winter rolled in, that it wasn't the best choice of work.

Ultimately, I credit Tegretol and luck for my recent improvement. I have TN2 but respond to anti-seizure meds, luckily. For now, I seem to be pretty stable.

I am also in the middle of the disability process and have help from a law firm. I currently have a reconsideration filed with SSDI. I was denied the first time around. I'm not quite sure what to do now as I don't feel that I necessarily need SSDI. However, the winter months are much more difficult, pain wise, and I am not too sure that I can convince the feds that my pain is seasonal. I sincerely hope that I don't have to take disability. A year ago, I would've felt different as constant pain hindered every aspect of my life.

If you have any questions about SSDI I am more than happy to tell you about my experience thus far. I have you in my thoughts! Johanna

39

Hi.

There are some meds that can help with "pain attacks." Some folks find relief from opiod pain meds and from benzo-diazepines (valium, ativan, klonopin). I have had some luck in the past with heating pads & meditation.

Maintenance medications (that's what I call them) such as anti-seizure medications do take time to build up in your system as do other medications. I take Tegretol & Lamictal, both anti-seizure meds, and they do take time to begin working. You may have to increase or decrease periodically. Though many anti-seizure meds have side effects, they often go away after your body adjusts to the medication.

I would recommend that you see your GP and ask for a referral to a neurologist for assistance with finding the right medications to assist with pain relief or reduction. Don't be frustrated if the first medication doesn't work, keep trying.

There are several "groups" and discussions on LwTN that address medications. You can also find more information under the "Face Pain Info" tab.

Good luck!

typqueen said:

oh wow really? These meds are all new to me. So I guess all the meds are like that right? You have to build them up for them to be effective? There isn't anything for "relief" from attacks right? (not that really work?)

40

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