I have been diagnosed with TN for about 2 months now and the pain is constant and the dr.s are playing with my meds trying to get them at the right levels. I am on 1200 Tegretol and it isn’t working well at all. My head spins all the time and the left side of my face hurts pretty much all the time. It has now affected my job. I am a Residential Care Aide and with the side effects of the Tegretol I am having a hard time working. I tried this last week and am so tired and the pain increased so much more. I am a single mom so working is very important but so is my health. Has anyone else had this problem?
Hello Shelley,
I really feel for you ,the pain dose get in the way. i always fear the pain as im not on any meds and have taken myself off them,yes i have alot off time off work but if you tell your boss and explain that you have TN and that you have no control over when you get the pain then im sure he or she will understand,always be upfront with them as then there will be no misunderstanding.
I hope your pain goes away and your work place understand what you are going thru.
Mina xxx god bless you =)
Yea its been really hard for me.
Im a technical analyst for dell so I have to wear head phones like all day.
Im going to lose my job over this but theres no way I can continue.
hi, im already getting comments like you have to think about your sickness and take pain killers and get on with it, its really anyoring i have only had for 3 months, i try not to take time off, but saometimes it gets to the piont where im nearly in tears in front of my patients (im a care support worker in a hospital)
emma
Hi Shelley,
I had to work half days starting in April, then had surgery so have been off work since May 7th. Luckily I have sick days built up that I am using. It’s so hard because we look OK - just feel awful with TN. There is a place on the home page here that explains TN really well for a caretaker. Maybe you could print that and share it with others. Hang in there. Keep asking questions and don’t give up hope. God Bless
Jamie
Thanks everyone, An update… I officially went on Medical Leave today until I am better. Very thankful for a wonderful understanding boss. One day at a time
Shelley,
What is the procedure for going on medical leave? I’m glad that you have an understanding boss and can take care of yourself now without worrying about having to go to work.
Jamie
Jamie, I took a Medical Leave of Absense from my job, so my posititon is secure when I am ready to go back. Most important right now is getting well and not worrying about if I can go to work today or not
jamie leigh said:
Shelley,
What is the procedure for going on medical leave? I’m glad that you have an understanding boss and can take care of yourself now without worrying about having to go to work.
Jamie
Shelley,
With a Medical Leave do you get any income? How are you feeling today?
Jamie
I have often wondered how anyone can hold down a job with this condition. I am lucky in that we live frugally off my husband’s income. We have a 20 acre ranch way out in the boonies, live off-grid with solar and wind power (no electric bill!). I do have a bunch of animals to take care of, but fortunately it doesn’t take a lot of brains to shovel horse poo. Good thing, because my brains are pretty scrambled after 6 years of anti-seizure meds. I have to feed the critters, or my horses will kick the side of the house until I do! HA! I work around pain attacks, which can be difficult when I have long periods of unrelenting pain like I’ve had the last 4 days. I managed to feed the animals and gather eggs, but that was about it. Then I feel worthless on top of being in pain because I keep thinking about all the stuff I need to get done. Jamie has a great suggestion, printing out the “TN for the caretaker” pages. I gave that to my husband to read and I think it helped him understand this a little better. When I try to explain what I am feeling while I am in pain I’m sure I sound like a crazy person. I am so hoping the MVD surgery will take this pain away and let me stop taking the meds. My heart goes out to you who have to be in the workplace. It has to be a lonely place to be when no one but you can imagine how much pain you deal with on a daily basis.
hi shelly,
I really feel for you as I’m in the same boat, I am also single and rely on my job to pay the mortgage and bills, I have no family to bail me out either unfortunately. I have only taken 2 weeks off on the sick recently through all of this (nearly 4 years) but I am so aware that this is only going to get steadily worse and I am dreading it 
Im currently taking Gabapentin (2400mg daily) and luckily side affects have been minimal, I do get a bit drowsy but still manage to do my work as an analyst, albeit slightly slower than I used to!
I can only advise that you try the different drugs available to see if this helps with the tiredness. Unfortunately drowsiness seems to be a side affect with all of them but maybe some will be less severe than others for you.
I sincerely hope that you get sorted soon and find some pain relief
Suzanne xx
Hi, I work as an admin and am the back up receptionist. I have to talk all day long. I have told my boss about my condition. When our receptionist isn’t here and I am hurting, I don’t answer the phones. I klonopin (sp) as well and that seems to give me immediate pain relief. I can take up to 3 a day. I didn’t like the Tegretol so I am trying to manage without it. When it gets really bad, she gives me a shot of cortisol.
Good luck and I hope you find something that work for you.
jamie leigh said:
Shelley,
With a Medical Leave do you get any income? How are you feeling today?
Jamie
Hey jamie hope your doing better. You have 90 days of FMLA available to you each year. Its federally required your job comply if you qualify which you do. your doctor will fill out the paperwork for you to turn back in.It is actually broken down into hours. It can either be written up for 3 months off or intermittent which would cover you if you miss a couple days a week or half a day etc. it last longer that way. i was on intermitent for a while. i was trying to work a 40 hour week but considering i was only getting maybe an hour or 2 or sleep then going to work on pain medication trying to work a job just became impossible. so the doctor moved it over to full time off. you wont receive pay from fmla itself. only if you have some short term or long term disability benefits. i dont pay for any but fortunately my job provides it. i have been off since december 09. my fmla expired april 1rst so my job has me at this point on leave of absence until i am release from the doctor. i am very fortunate because that is not typically the case. the leave of absence would be determined by your employer. let me know if you have any other questions. sorry i dont get on very often but still in alot of pain. try to sleep only time it dont hurt.
Hi Shelley
I have just asked something similar. I am a Restaurant Manager and just this past 2 weeks I have taken off due to the fact that the pain has increased and so has my medication to 1200 of Tegretol. Yesterday I felt particularly spaced out with washing the dishes a bit of a struggle. I have been unable to drive also. This is very distressing as I also need to work but I also know that my job is high stress which does not help the condition. The past three days I have been getting “symptoms” of Neuralgia on the right side of my face. my pain has always been on the left. I am terrified of the possibility I am even more stressed out.
To answer can this level of pain and medication not but affect us in our daily lives!?? It is not good and I am waiting on an appt with pain guy with hopefully a view to going back to work. Have you any proceedures coming up???
Karen x
Hi Karen,
I also have a high stress job that requires me to talk a lot ( teaching 2,3,4th graders). I have always been a hugging, smiling teacher and poured lots of energy into my students. Between the pain and the tegretol it got to the point where teaching was impossible. I’m recovering from MVD but I don’t think it was a complete success.
I also have pain in the opposite ear of my TN. The doctor has told me this could be referred pain…pain associated with the TN on the other side and does not necessarily mean I am developing TN on the that side. I can only hope that is true. I am doubting whether or not the drs. really know anymore. I think they know how to go in and do the surgery but this condition is so different for everyone. We have all been to so many doctors and specialists and told the same story over and over and over to so many people!!
Good luck to you.
Hi Jamie Leigh
I realy hope you are wrong and that the surgery was a success for you!. I had it done 15 months ago and it did not work. And so know I find myself in this position which I thought I never would see if I’m honest. I am extremely dedicated to my work but as with you it involves contstant interaction with people. My sick leave is up on this day week and I do not know what to do as I am not better and if anything just more drugged up. I am trying to get an appointment with a neurosurgeon re what else can I do??? Have you ever heard of the Gamma knife?
Karen
jamie leigh said:
Hi Karen,
I also have a high stress job that requires me to talk a lot ( teaching 2,3,4th graders). I have always been a hugging, smiling teacher and poured lots of energy into my students. Between the pain and the tegretol it got to the point where teaching was impossible. I’m recovering from MVD but I don’t think it was a complete success.
I also have pain in the opposite ear of my TN. The doctor has told me this could be referred pain…pain associated with the TN on the other side and does not necessarily mean I am developing TN on the that side. I can only hope that is true. I am doubting whether or not the drs. really know anymore. I think they know how to go in and do the surgery but this condition is so different for everyone. We have all been to so many doctors and specialists and told the same story over and over and over to so many people!!
Good luck to you.
Karen,
I’m sorry your MVD didn’t work. What happened? Did they find a compressed nerve? Did the pain let up at all or for any length of time? I have heard of gamma knife but don’t know too much about it other than it is much less invasive than the MVD. I never want to go through the MVD again!! I will be thinking about you and praying for you…and all the others who are suffering with this. BTW, today is much less pain for me than yesterday.
Jamie
Hi Karen and Jamie,
I’m new to the site and was reading about trying to keep your jobs, and the Gamma Knife Radiation treatment, and I did have the Gamma Knife in March 2009, but it hasn’t worked for me. The procedure itself is easy, painless, quick and a bit messy…you get to go home 3 hours later with your hair full of betadine, and can’t wash it out for 24 hrs. I was back at work the next day, but it really didn’t help and I got fed up with my surgeon saying it’d be just a few months more to see results, until a year passed, and nothing. He wants to do it again with a stronger radiation, but I lost my job last year due to all the time I took off, a medical leave, missed appointments, being a no-show at the company’s social functions etc. They never said it was because of my TN naturally, and I got a nice severance, but I can never work again in public, until I get this condition under control, and I am contemplating MVD, which is getting such mixed reviews from you and others. Now the pain has come back daily, and my medications are almost ineffective, so do hope things change soon. The best to you both…Donna
Hi Donna Just as you are dissappointed with our reports hat MVD did not work I felt the Gamma Knife was the next step for me. Donna there is a member on here Brian who had MVD done in January and is pain free and medicine free since then so it really could be the thing for you!! Don’t lose heart and I will try anything now.
Karen x
gamma knife has minimal long term safety data on the risks of radiated brain matter. it is the most destructive procedure. using high doses of radiation to lesion the trigeminal nerve. once the nerve is dosed, the radiation cannot be controlled. spreading of radiation can and has occurred, resulting in necrosis of brain matter. other risks are worsening of pain and numbness to the face.
the patient data i have collected for gamma knife is less than promising. i know two women right now who have horrific pain and numbness from the gamma knife procedure; it occurred over several months after the procedure. their doctors promised them a quick fix; if it seems too good to be true, it usually is.
understanding this is a highly personal decision, i would urge anyone who does not have a fatal brain condition to seek alternative treatment options. gamma knife and cyber knife offer risks which currently outweigh the benefits.
good luck,
the researcher
Karen Russell said:
Hi Donna Just as you are dissappointed with our reports hat MVD did not work I felt the Gamma Knife was the next step for me. Donna there is a member on here Brian who had MVD done in January and is pain free and medicine free since then so it really could be the thing for you!! Don’t lose heart and I will try anything now.
Karen x