I am so happy to have found this site and to be able to talk with people who understand the personal hell called TN. It came into my life 4 months ago. I only experience the excruciatingly painful stabbings in the peripheral branches in the left side of my forehead. Occasionally, about 1% of the time, I get a stabbing pain (usually only one or two at a time) on the right side of my forehead. Prior to meds, I could easily get 500 stabbing pains per day in my left forehead. With meds I may go several days with nothing, then a couple of days with 100-200 stabbing pains with much less pain intensity than without meds. Of course, as you all know. the side effects of being dizzy, always tired, lack of coordination, forgetfull, occasionally depressed, etc. is a real drag. With all of that said, I am wondering if I will ever be able to go back to work and function (I'm a computer/IT consultant) who also likes to play in regional and national softball tournaments. Give it to me straight, how do you manage to have a work life or any type of athletic life with this miserable disease and the side effects of the meds? I'm determined to beat this thing, whatever that means, but the side effects (I've been on Neurontin, then Trileptal, now a combinatin of Trileptal and Clonazepam) don't allow me to mentally function well enough to be able to work or to hit or field a softball well. I swing for the ball "in the middle" when the pitcher pitches to me, then run crookedly to first base. (That't only a slight exaggeration.) Can you work with this disease and what accommodations might a company make? As a consultant, you are cut no slack whatsoever. If I try an employee position, they may just not hire me, especially if I am slurring my words during the interview. Sorry for the rambling. I'll use the "I'm on drugs" excuse that we all probably use at time. All feedback would be appreciated. Please be brutally honest. Many of you have a lot more experience with this disease than I do. And as I said, I'm determined to beat this thing the best that I can. I am (was) an incredibly active 57 year old who has a lot of good years to live since my family genes indicate that I will easily make 90 unless I get hit by a bus.
Hi there -- brutally honest -- I was put on Lyrica and diagnosed correctly very early on - lucky in Oct. 2010. I came here often to research and the face pain site too. 1st med made me dizzy and high, then neurontin made me like drunk.
Trileptal saved the day - but I became a complete idiot -- Had recently gotten a govt. job with my new Master's and had to quit in month 4. Neurologist suggested moving from Trileptal to Lamictal -- I said NOPE - I'm going for surgery.
Had no pain - had no life. I researched for 10 months - and picked a neurosurgeon --- one that learned under the Inventor of the MVD surgery. I watched any video I could get and any blog I could find about Dr. Ken Casey in MI. I flew from MO in October 2011.
I emailed him and asked if he knew of a doctor in my area or near? He said no -- just like my neurologist said -- and he said he would do it for me. So I flew to Trenton MI - had lunch in Canada with hubby and daughter -- stayed in a local apt. the hospital rents out -- and stayed 1 day ICU and 1 day regular room - one more day at nearby apt.
Then we drove to KY - spent 2 days to rest --- (I was fearful of flying home with air pressure etc.) so incase I needed an ER - could find one.
Came home - stayed in bed on drugs for several days.... then started activities very slowly
could have went to work in week 3--if I had a job! I lowered my trileptal to 150 the day before my surgery.
The highest--trileptal 900 at pain free or minimal/ with lidocaine patch for extra shocks sometimes
I came out pain free after MVD- but - starting week 11 I spent 3 months at 85% pain free - with help of patches.
Now at 98% pain free - and GOT A JOBBBBBB 2 weeks ago !!!! Will be taking last 150 off trileptal when we get home from trip next week!
I have plenty of patches - and have clonapin for another diagnosis - just in case --- could always need 2nd MVD - The ONE year mark is when the nerves should have settled if they are going to --- so I'm not there yet.
TN doesnt much go away forever --- I'm in remission - and can help others.
Keep Posting -- sorry so long!
Thanks for the excellent information. The more I read, the more I see that we are all so different in how we experience TN symptoms and how we react to TN drugs. So many decisions to consider. Change drugs? More of the same drugs? Brain surgery (scares me)? Be a mild zombie, avoid surgery and its potential complications while coasting to retirement living a more meager lifestyle with my wife working (also scares me)? No easy answers but all of you will help me build a plan...with my neurologist...so that I can lead a fulfilling lifestyle. I'm keeping the faith and thankful to you all for your help and information.
Fyi...will be at Mid-West Sports Complex in KS in a couple of weeks playing in a softball tournament, TN-willing. I'll either be sitting and watching in pain or playing and doing the best I can given the side effects. One thing I know is that it will likely be hot and humid!
Kc Dancer Kc said:
Hi there -- brutally honest -- I was put on Lyrica and diagnosed correctly very early on - lucky in Oct. 2010. I came here often to research and the face pain site too. 1st med made me dizzy and high, then neurontin made me like drunk.
Trileptal saved the day - but I became a complete idiot -- Had recently gotten a govt. job with my new Master's and had to quit in month 4. Neurologist suggested moving from Trileptal to Lamictal -- I said NOPE - I'm going for surgery.
Had no pain - had no life. I researched for 10 months - and picked a neurosurgeon --- one that learned under the Inventor of the MVD surgery. I watched any video I could get and any blog I could find about Dr. Ken Casey in MI. I flew from MO in October 2011.
I emailed him and asked if he knew of a doctor in my area or near? He said no -- just like my neurologist said -- and he said he would do it for me. So I flew to Trenton MI - had lunch in Canada with hubby and daughter -- stayed in a local apt. the hospital rents out -- and stayed 1 day ICU and 1 day regular room - one more day at nearby apt.
Then we drove to KY - spent 2 days to rest --- (I was fearful of flying home with air pressure etc.) so incase I needed an ER - could find one.
Came home - stayed in bed on drugs for several days.... then started activities very slowly
could have went to work in week 3--if I had a job! I lowered my trileptal to 150 the day before my surgery.
The highest--trileptal 900 at pain free or minimal/ with lidocaine patch for extra shocks sometimes
I came out pain free after MVD- but - starting week 11 I spent 3 months at 85% pain free - with help of patches.
Now at 98% pain free - and GOT A JOBBBBBB 2 weeks ago !!!! Will be taking last 150 off trileptal when we get home from trip next week!
I have plenty of patches - and have clonapin for another diagnosis - just in case --- could always need 2nd MVD - The ONE year mark is when the nerves should have settled if they are going to --- so I'm not there yet.
TN doesnt much go away forever --- I'm in remission - and can help others.
Keep Posting -- sorry so long!
Brad, I work full time in a demanding job. The secret to keeping me in work has been to find a good neuro who then spent a lot of energy and time finding a medicine regime that worked for me. I appreciate that not everyone is as lucky as I have been. Also after some time we often acclimate to the worse side effects of the meds and find life easier. I hope this is what you find too.
Thanks Jackie. I think I may have a ways to go to find that right combination of meds. I was hoping my body would acclimate a bit faster since it has been 4 months and I still have dizziness, heavy fatigue (particularly early in the afternoons), slurred speech at various times of the day, short-term memory issues, blurry vision, poor hand-eye coordination, etc. Fyi, a consulting firm filmed a promotional interview with me about 2 weeks ago to use as a way to pitch me to potential clients. They played it back for me and I thought I was watching a character in the the movie "Return of the Zombies". I have to "get the job" first before I can hope someone will be willing to understand my disease/condition and be accommodating as-needed. That may be my predicament. But I'm a determined individual!
Jackie said:
Brad, I work full time in a demanding job. The secret to keeping me in work has been to find a good neuro who then spent a lot of energy and time finding a medicine regime that worked for me. I appreciate that not everyone is as lucky as I have been. Also after some time we often acclimate to the worse side effects of the meds and find life easier. I hope this is what you find too.
I have continued to work full time in a job where I am frequently "on stage." I have definitely gone from being a top performer to a good/erratic one. I have been through most of the drug combinations, if not all, and I haven't felt like a 15% improvement in the pain is worth memory loss. I definitely feel like folks "get" me a lot less -- I'm forgetful, spacey, moody, too tired to socialize, and frequently in a lot of pain. It is painful because I used to be very into my work and social. Now I've accepted that it may never be that way again, and try to be glad that I've been able to hold on well enough that I'm not in fear of losing my job.
I had a demanding job in management and providing customer service in a very corporate world and I tried to stay in it as long as I could until the pain of TN and the side fx made it impossible to maintain focus and communicate effectively on a regular basis. I have now been out of work for a year. At times I find myself somewhat jealous of people whose work is not effected by TN. So to those that are able to work I both congradulate and envy you. I hope to someday resume my carreer and the life that I once knew. Until then I believe that things happen for a reason and perhaps this is the powers that be telling me that I was in need of slowing down and realizing that there are more important things than work
I work full time but it is very, very difficult. I am fairly new to this TN
stuff and have chosen not to tell my employers about the
TN because of fear of losing my job (I have observed in the past that they are very "legal" about not firing someone for a medical issue but rather they will wait and find some other "non-medical" reason to terminate your employment, often applying so much stress that you are almost forced to leave on your own because you can't stand the pressure you are under, yes it is illegal but I have seen it way too much by my employer in the past to not know that this is how they work). The meds do their usual "brain fog" thing as well as making me walk around like I am drunk all the time. So far I have been able to do it but I don't know if I can for the long term. My hope is that the side effects will lessen (it has been 2 months so far on Tegretol). Don't give up!
Hi Brad,
I find that because TN isn’t a visual disease, the company i work for seems less compasionate, i have used my long service leave, annual leave, sick leave etc.
Im too groggy from the medication and cant keep train of thought soo…
My company won’t give me unpaid leave, and i have no ‘definate’ answers yet from my neurologist, for insurance purposes.
So it looks like i’ll be returning to work and probably a liability , holding onto my head and wishing i was anywhere but there…
Depends on your job i guess
G'day Brad
I work for a Multinational here in Australia and was State Service manager for a time.
I had issues for years and years but was diagnosed in 2005 with ATN.
I had MVD in 2006
With Gabapentin and other drugs I have maintained my job but I have recently stepped back from state manager when I did my back in.
As to sports I took up Trail bike riding. Mainly as I always wanted to but put it off.
I started off as a very crap rider and stayed at the back of the pack (up to 90 of us used to go out) but when I got the meds sorted and my balance came to me I got better and better. I have mentioned elsewhere I had a tornworlt cyst. once it was removed I had better balance than I ever had in my life.
When I last rode I was really enjoying it. every weekend . getting dirty and mixing it up with mates. BUT i stuffed my back at work so now I dont ride anymore.
The MVD seems to be waring off. the drugs seem to take care of the symptoms "OK" and I can hold my own at work most days.
So yes I personally am able to work. My employer looks after me ok.
When I am not busted up I do get out and take part in sports.
Simon
Thanks everyone for the valuable information to help out this TN newbie (4 months). To be honest, it doesn't sound too promising for me to be able to get back to "being me" and being able to function "normally" given the side effects of these drugs. Higher doses and lower doses seem to cause enough side effects for me personally that it is hard to function some days, like today. I've had no stabbing pains in my forehead today yet, after about 500-600 over my just-ended anniversary weekend (bad timing). The results of MVD surgery seem to be all over the place, meaning that it has worked for some, not worked well for others, worked for a while for others, etc. For a guy who has only had knee surgury, messing with my brain and nerves scares me more than a little and I will certainly do more research on it. The work side of the equation is difficult since I am "between IT consulting contracts" right now and getting one as a zombie is not going to work. As I keep telling my wife, I will beat this thing somehow...whatever that means. At 57 and with very long-living genes in my family, I prefer not to be going through this for another 30-35 years.
Hi Brad, I am in a management position for a newspaper and can work 7 days a week (am always on call). I am lucky to have a very understanding Director who has seen me suffer for years but knows the work I am capable of doing (or used to be!) I am on tegretol and deal with brain fog, exhaustion, vision problems, the usual lot of side effects. On very bad days I turn off my lights and pull of my glasses as much as I can and work at my pace, not the companys. I also put sticky notes on everything - on good days I will add notes to everything I am working on, lots of times with names I don't remenber on bad days. I also take up to an hour before a meeting trying to review everything and putting down as much as I can on paper because I've had remarks fly right out of my head in the middle of meetings!
I am also part of a very active family. We have been involved in softball for years, I was coaching my youngest daughter's team this year. I went from on the field to doing the book and keeping order in the dugout but was still at every game. It was very hard some weeks. I am also incredibly hard headed and always push, even if I know I physically cant - this has resulted in terrible flare-ups but I am still trying. I am (was) also a runner - this I can no longer do - at all. I have tried, more than once, but it causes too much pain and I feel disoriented when running.
I think I take the same attitude as you, I want to live a normal life - or as close to normal as possible. TN makes that so incredibly hard. There are many days, weeks, I dont think I can do it anymore but I guess I'll keep trying.
HI, Brad
I had TN on the right side of my face above my lip area for about 3 years then I had MVD surgery. I had the surgery almost 2 years ago. The surgery was wonderful for me and the actual surgery was not as bad as I thought it would be. I have never been off of tegretol though, but, I am only taking 200mg a day now. I developed TN on the other side of my face 10 months following my surgery.
The MVD surgery, did give me back my life as for as I can live now without the fear of when the next painful attack is going to happen and I have adjusted to the medication. I do think, however, when I do have to have something done about the other side I will do the rhyzsotomy procedure. I come from a family history of TN patients beginning with my Grand Mother. My Aunt, Brother, and Cousin chose this procedure and they have had very good success from it, but they do have numbness in a large area of there face from it. My Aunt who now is 91 years old, had the procedure done 30 years ago and she is just now having returning pains. She has been medication free for a long time. She did tell me though that it took her a very long time to adjust to the facial numbness.
Also, being a baseball player, I would consider rhyzsotomy because it has taken a very long time for my incision area to heal. Even wearing sunshade's now tends to irritate the area and the fear of being hit with a baseball there would be a constant fear for me. Good Luck to you! There is a book called "striking back "that is very helpful. It gives you a lot of information about TN.
Good Luck to you,
Linda
Hi Steph. Glad to hear you have an understanding Director. I am out of work now, so it will be especially hard for me to interview in a foggy condition to be able to land a new job...besides the age discrimination thing that can come from being almost-58. I like your use of sticky notes. I have a mini-recorder in my pocket to record short messages so that I don't forget things later.
Besides the work situation, I play softball like a 30 year old and have been playing on competitive tournament teams all across the upper midwest, pluse Phoenix and Vegas, on weekends for a couple of years. I am going to try playing in a local tournament at the end of this week but we'll have to see what happens. I have not hit a home run since this TN thing started. Tired, bad overall coordination and hand-eye coordination. In fact, I feel happy just hitting it someone into the outfield and then running crookedly and a little bit slower to first base! I've had to skip most recent tournaments.
I have an incredible wife who is very understanding...although it has only been 4 months. And with great kids and friends, life will always be well worth living...although I have my days where I fully understand why it is called the suicide disease. I would NEVER consider it but I'm just saying that I understand how depressed it could make some people feel that don't have the support groups that I have. This LivingWithTN website should be a help to all of us.
stephtoffey said:
Hi Brad, I am in a management position for a newspaper and can work 7 days a week (am always on call). I am lucky to have a very understanding Director who has seen me suffer for years but knows the work I am capable of doing (or used to be!) I am on tegretol and deal with brain fog, exhaustion, vision problems, the usual lot of side effects. On very bad days I turn off my lights and pull of my glasses as much as I can and work at my pace, not the companys. I also put sticky notes on everything - on good days I will add notes to everything I am working on, lots of times with names I don't remenber on bad days. I also take up to an hour before a meeting trying to review everything and putting down as much as I can on paper because I've had remarks fly right out of my head in the middle of meetings!
I am also part of a very active family. We have been involved in softball for years, I was coaching my youngest daughter's team this year. I went from on the field to doing the book and keeping order in the dugout but was still at every game. It was very hard some weeks. I am also incredibly hard headed and always push, even if I know I physically cant - this has resulted in terrible flare-ups but I am still trying. I am (was) also a runner - this I can no longer do - at all. I have tried, more than once, but it causes too much pain and I feel disoriented when running.
I think I take the same attitude as you, I want to live a normal life - or as close to normal as possible. TN makes that so incredibly hard. There are many days, weeks, I dont think I can do it anymore but I guess I'll keep trying.
Hi, Brad, You ask some really good questions, and they are similar to what I have been asking myself. I graduated college in 2009, and I thought "when I felt better" I would be entering the workforce (I've worked over the years, just not in a designated career field). I had been a stay at home mom, barring some library jobs, for the last 26 years. However, when I only got worse, and the diagnosis became TN, I wondered how on earth I was going to do any of the jobs I had originally planned on. The Veteran's Administration (who put me through college) is asking the same thing. I simply cannot handle noise anymore. Right now, I am waiting to find out if I will be going back to college to become a librarian. It's a much quieter job than teaching or secretarial/government work, etc... Not as many phones. I am not sure I could do many jobs these days, not like I could before, and it concerns me. If I don't become a librarian, what CAN I do? So, my answer to your question is 1. I don't really know, and 2. I suppose some of us, if we want to work, are going to have to be creative about careers. And that is not an easy fix.
As for sports, I cannot handle a lot of jarring, or the noise of the gym, so I adopted two border collie mix puppies, Marcy and Clover, and they keep me active. Not as active as I want to be because we are still in three digit temperatures, but more active than I would be on my own. If they get noisy, I wear earplugs. They don't care if I respond correctly with the right words to their little yips and yelps. Anyway, I wish you the best in your search. I wish I had something concrete to share. I understand what you are asking, though. Too bad the answer is not easy. Blessings.
Hello oucie-booboo. Thanks for the response. I hope things are going better for you...or at least not getting worse. I have learned so much about this disease since finding this site. Still juggling with med cocktails, all with side effects that would prevent me from thinking clearly enough to work, and hoping to get into Mayo (Rochester, MN) in the next couple of weeks to see what they can come up with. I too wish I was one of the luck ones who didn't have the rough side effects that mess up the head and ability to think clearly. So far the choice is between having up to 500 stabbing, electrical pains in my forehead each day or having side effects that don't allow me to work or have the life I was used to just 5 months ago. I'll continue to be persistent in finding something that provides me with a better quality of life. At first I thought this was a situation where I take some pills for a couple of week or months, get better, then get back to my normal life. I guess I underestimated it...not knowing much about it at first. Take care. Good luck.
ouchie-booboo said:
I had a demanding job in management and providing customer service in a very corporate world and I tried to stay in it as long as I could until the pain of TN and the side fx made it impossible to maintain focus and communicate effectively on a regular basis. I have now been out of work for a year. At times I find myself somewhat jealous of people whose work is not effected by TN. So to those that are able to work I both congradulate and envy you. I hope to someday resume my carreer and the life that I once knew. Until then I believe that things happen for a reason and perhaps this is the powers that be telling me that I was in need of slowing down and realizing that there are more important things than work
Ohhh - I forgot.
I asked my neurologist for something to use for focus. He gave me ritalin! Gave me energy and really helped me be less zombie. Cant do it forever, but you could take 1 on the days that you know you have to really majorly concentrate
Doc said many of his epileptic patients take it because of what the meds do to them
Kc, I use Ritalin, too, for ADHD. It does help with some of the fogginess I get with the TN. I didn't know about the use for epileptic patients, but it makes sense.
Hey Brad,
I am an home health nurse, and I work at least 53 hours every work and then go home to deal with anywhere from 2-5 kids all under the age of 6 (2 are mine, ages 2 and 3, and my mother babysits 3 others for a friend). So needless to say my life is quite a whirl wind at times. I was just diagnosed about a month ago, but this disease has hit me hard and quick. I was having signs for about the past four years but like most other just attributed it to other problems I thought I had. Right now I'm battling to find a medicine regimin that allows me to function for my job and then go home to spend time with my children. Right now I'm on higher doses of Trileptal(900 mg in am and 1200 mg in pm) and they don't seem to effect me with too many side effects, except that I don't sleep still because of the pain. So the MD just put me on valium and dialudid to attempt to make me sleep(4 days in and still no change). With the new meds I'm def a little "goofy" so I only take them before bed time, but my main concern is lack of sleep tends to mean mistakes at work. I am a little younger than the textbooks say most people that have this disease so I often wonder if thats why I am able to function a little better. That and Ive grown up in a family that always just said "suck it up and put a smile on....there's always someone else that's got it worse than you"...but I have my days where all I want to do is curl up and cry. I def have the same wish as to keeping my normal life, but have already saw my old social life go right down the toilet...some friends are understanding, others have seem to lost my phone number already...oh well...their loss. My only advice is to keep your head up and keep on trying different approaches til you (and me too) find something that works well for your situation. Hope you have a good day!!