Hi Meghan. Thanks for the message. I hope you're having a good day. I too am a fighter and am very determined to find the best quality of life that I can with this disease and adjust from there. I'm 57 but always very active and athletic (softball) and determined to have plenty of fun times ahead of me. I will do what I can to make this just a speed bump in life. At the same time, I need to be realistic in that there may be a "current me" that will never be the same as the old me. I'm only on 900mg Trileptal per day but am finding that my brain does not work too well in that my thinking ability has really taken a hit...along with dizziness, balance issues, grogginess. Prior to that I was on Gabepentin (2700 mg) and referred to myself as "zombie boy". They do effect people differently. Have a wonderful day.
Meghan Sinclair Thornton said:
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!!
I'm a little confused about the use of Ritalin...as is my teacher-wife who has seen lots of kids on it to "take the edge off". My edge is already WAY off due to the side effects of Trileptal...and Gabepentin before that. Seems like a double-downer to me. What is your understanding of why it would work with TN?
booklass said:
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.
Hello. I've had a long career in IT management and IT consulting in Corporate America. I too have a hard time maintaining focus...to say the least. Like others have mentioned, I can be looking right at someone and not have heard what they just said the last minute. On communication, I might start slurring out of the blue. And putting together an email might take me 10 minutes when it would have taken me 30 seconds before. And let's not even talk about grammar and spelling. And I'm only on 900 mg of Trileptal. I still have 10-300 foreheads Type 1 stabbings per day with that. I am hoping to get into Mayo (Rochester, MN) to see if I can somehow find a treatment plan that would allow me to get another IT consulting gig and return to playing in regional softball tournaments. Some have told me that my goals are too high, but that's my plan.
Brad said:
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
I can’t work at a job anymore due to TN pain. I’m on disability. My TN seems to be related to any sort of stress, especially emotional stress. TN hit me full force three years ago. At the time I was working for the State as assistant to a district manager and really believed that I needed to work, so an mvd was arranged for me. It didn’t work so very well for me. It probably helped since the surgeon found three places that were irritating the nerve, but I continued to have dibilitating pain afterwards, so after six months on unpaid leave, boom. No job and lots of meds to control pain. Bummer. Life goes on in a different way than before. I’m always trying to return to things I truly loved doing like jogging (recently for “the cause” which lasted two days before pain and lack of energy zapped me) and playing with my young grandchildren. Mostly these days I take it easy. I’m so glad to have an ipad for entertainment. Sometimes I have to think only moment by moment, or the dullness of my situation will drive me literally crazy. Drugs have clogged my brainwaves from stem to creativity and libido. I actually hate this situation, but somehow will make it work. Pain is a monster that enslaves and torments its captive. I would laugh at the absurdity of trying to make sense of living with pain, except that hurts so I reserve the joy, but painful, vivacious laughter for my grandchildren. Everybody else who knows me understands the physical restraints of TN associated with me. Brutal honesty sure feels good to write about, but for the reader? Well, I’m not sure if Hitting “ADD REPLY” is a pitiful thing to do. I don’t seek pity - no way, but to be heard, that’s something good to do on a site like this instead of complaining to those I see and know.
Sorry for the confusion -- if YOU have ADHD - Ritalin will calm you down and make you focus.
If you are NOT ADHD but on a Fuzzy med -
Ritalin WILL make you focus and have more energy per my experience.
Example - my daughter was ADD and took Adderall to focus for school.
Found out They made her calm, almost to the point of drooling because she is truely ADD, Mildly so.
I would not give them to her till I took one myself- I was afraid for her to take it for high school.
(WAY before my TN) --
so I took one and focused on cleaning the entire house top to bottom in 2 hours - usually a 4 hour job!!
I did this in the early morning which is my most fuzzy and least energetic time of my day.
SO my doctor said that his epileptic patients - who are on these fuzzy meds - get focus and energy from Stimulants and it worked for me. Also works for an epileptic friend of mine. BUT
There are very tight controls on them and you have to be aware to take only in morning - and only when necessary -- like not on saturday morning when I would sleep in and laze around.
The extended release lasts all day.
That's how I worked on an entire year of research on the computer for my MVD -- Ritalin with my Trileptal. Could not have done it on Trileptal alone.
I have suffered with TN for the past 3 years…today is my 2nd sick day because of TN. In my job there are so many people being dismissed because of sickness absence I am terrified to take any time off. This morning however I am unable to do anything the pain has caused me to have no power in my right arm or leg and has hindered my speech. I am determined this ‘thing’ won’t beat me and won’t dictate my life but when it’s bad…it’s bad
Hello Notafraid. Hey, we all are here to support each other. We all understand the misery of TN and all understand that we can't let the disease define who we are. I had a good day yesterday and took the opportunity to do a few things that I really enjoyed. Today is not starting out so good but hopefully it will get better. Unfortunately my Trileptal side effects don't allow me to run because I get so tired very quickly and because it gives me some balance issues. Otherwise I would be running regularly and playing senior softball...both of which I was doing prior to 5 months ago. I tried softball for about a month but I had to give up (a passion for 30 years) because of poor hand-eye coordination and general bad balance. Now I just walk a lot. My wife knows that when I start trailing behind her on our walks that it is time to head back home before she has to carry me. Life is different but I'll make it as enjoyable as I can. I did have a weak moment about a week ago when I was so frustrated about 2 consecutive days of about 500 Type I stabbing pains to my left forehead that I put on my Facebook page "Trigeminal Neuralgia sucks!". Opps.
Notafraid said:
I can't work at a job anymore due to TN pain. I'm on disability. My TN seems to be related to any sort of stress, especially emotional stress. TN hit me full force three years ago. At the time I was working for the State as assistant to a district manager and really believed that I needed to work, so an mvd was arranged for me. It didn't work so very well for me. It probably helped since the surgeon found three places that were irritating the nerve, but I continued to have dibilitating pain afterwards, so after six months on unpaid leave, boom. No job and lots of meds to control pain. Bummer. Life goes on in a different way than before. I'm always trying to return to things I truly loved doing like jogging (recently for "the cause" which lasted two days before pain and lack of energy zapped me) and playing with my young grandchildren. Mostly these days I take it easy. I'm so glad to have an ipad for entertainment. Sometimes I have to think only moment by moment, or the dullness of my situation will drive me literally crazy. Drugs have clogged my brainwaves from stem to creativity and libido. I actually hate this situation, but somehow will make it work. Pain is a monster that enslaves and torments its captive. I would laugh at the absurdity of trying to make sense of living with pain, except that hurts so I reserve the joy, but painful, vivacious laughter for my grandchildren. Everybody else who knows me understands the physical restraints of TN associated with me. Brutal honesty sure feels good to write about, but for the reader? Well, I'm not sure if Hitting "ADD REPLY" is a pitiful thing to do. I don't seek pity - no way, but to be heard, that's something good to do on a site like this instead of complaining to those I see and know.
Hi Jennifer. Sorry to hear that you're having a tough time today. I wish you the best. I really like your attitude about not letting TN beat you or define who you are. I certainly agree with you there and try to maintain that attitude as much as I can...which I admit is easier to do on less painful and less side effect days. Take care.
Jennifer Wheater said:
I have suffered with TN for the past 3 years...today is my 2nd sick day because of TN. In my job there are so many people being dismissed because of sickness absence I am terrified to take any time off. This morning however I am unable to do anything the pain has caused me to have no power in my right arm or leg and has hindered my speech. I am determined this 'thing' won't beat me and won't dictate my life but when it's bad...it's bad :-(
