I've thankfully been mostly pain free since my MVD a year ago. But I have had some pain issues from time to time (other side of face) and have to step up my meds during those times. I 100% understand the spacey feeling. I have found a little success in using DMAE to help with concentration. I would suggest 2 or 3 of the pills, the liquid smells awful, so I'd stay away from that. I have found it online at places like vitacost, but I noticed it at Vitamin World. Please feel free to send me a message if you have other questions on it.
Be Happy…..discuss your dosage with a Dr. pronto! There has got to be something that can be done that works for you. Everyone has a different thing that seems to work best for them. Don't give up to the pain..there is so much more to you, to all of us then this disability. If your Dr. won't work with you find one that will. Rooting for you!!
Hi,
nope sorry :-(
but if you do, please let me know as I am even afraid of driving because of the side effects of my meds & I would really love to go back to work as I lost my last job thanks to this :-)
Dee
Only every single day and I don't even have a job, lol. I don't think my dose of Gabapentin is even that high, usually 600 mg a day but I've just upped it since the 28th to first 700mg and now 800mg because the pain was getting worse and I'm feeling pretty high. I managed a walk with my dog today so that's good. I find that the mornings are the best for brain power for me and then it's anybody's guess how the rest of the day goes. I did a free trial on Luminosity today, playing brain games and it was a hoot, I might join. It's not too expensive either. I'm finding that my spelling skills are taking a dive and I used to be a good speller. Not to mention speaking, but that and trouble concentrating are real side effects of Gabapentin. Better that than the pain, for sure!
I take 3600 mg of Gabapentin a day plus tegretol twice a day and had to stop working 6 months ago because of side effects and there are still days I have a lot of pain.
There are a lot of days I should not even drive and can’t recall even the simplest words or anything…memory is horrible…it takes me twice as long to do anything.
Gabapentin was the worst for me, at 2400mg I just sat like a zombie and didn't do the things I normally did. And it was only effective for a very short time before having to up the dose.
I have atypical pain and nortriptyline was way more effective than the gabapentin. Now I take max dose of nortriptyline, max dose of cymbalta, and 40mg oxycontin daily.
Well......we are all "medicated", hahaha....at least we're not sitting in a corner drooling, LOL
I've just upped my Gabapentin and I'm ready for bed and it's only 6:00 pm here, so ya I can barely concentrate on this!
I wish us all a med free and pain free life!
Take care,
Cheryl
Shindig said:
Gabapentin was the worst for me, at 2400mg I just sat like a zombie and didn't do the things I normally did. And it was only effective for a very short time before having to up the dose.
I have atypical pain and nortriptyline was way more effective than the gabapentin. Now I take max dose of nortriptyline, max dose of cymbalta, and 40mg oxycontin daily.
On the plus side, my Gabapentin has helped me mellow a bit. I tended to run a bit type A and am learning to let things go.
I enjoyed being "sharp" but the edge is off...I also find myself transposing letters recently. For my first year or so with TN I was an inventory auditor (10+ yrs in the position). I took the first position that opened to voluntarily demote myself to take some stress off and because I could feel my brain slipping a bit, hoping to be proactive. That move put me through an entirely different terrible situation which led to a workplace back injury. What is really messed up is that my TN affected the care I received (or, more accurately, did not receive) for my back injury.
I was on a very low daily dose of 400 before last July (I just spent 2 min. trying to think of the right word for pain increasing and meds not working so I gave up and typed July, lol). Up to 900 mg daily and notice myself yawning while at work ... even after my regular coffee. Oh well. Prefer yawning to pain.
LOL shadow2....about spending 2 min. to bring to mind the right word. I've done that a lot. I also have to check how to spell some words and I have to edit what I write. That's what's great about this type of communication I suppose! It's good that you can still work. I also take muscle relaxers for TMJ and they do a number on memory too. Oh the joys!! :)
shadow2 said:
On the plus side, my Gabapentin has helped me mellow a bit. I tended to run a bit type A and am learning to let things go.
I enjoyed being "sharp" but the edge is off...I also find myself transposing letters recently. For my first year or so with TN I was an inventory auditor (10+ yrs in the position). I took the first position that opened to voluntarily demote myself to take some stress off and because I could feel my brain slipping a bit, hoping to be proactive. That move put me through an entirely different terrible situation which led to a workplace back injury. What is really messed up is that my TN affected the care I received (or, more accurately, did not receive) for my back injury.
I was on a very low daily dose of 400 before last July (I just spent 2 min. trying to think of the right word for pain increasing and meds not working so I gave up and typed July, lol). Up to 900 mg daily and notice myself yawning while at work ... even after my regular coffee. Oh well. Prefer yawning to pain.
I have enjoyed reading all these responses. The enjoyment is from realizing how many people are having the same exact issues I am and I don't feel so 'crazy' now. Thank you all for writing. I wish we didn't have this problem but since we do, it is nice that we have this site to connect us all. I am noticing just how many of us can't work anymore and I am so sorry for the ones in that position. I am just going to keep doing all I can to hold onto my job and if I lose it some day, I will know I tried everything I could think of.
Mistee,
thanks for the post. You have some good points and I will be talking with neurologist about whether or not it is good for me to reduce my meds when doing well...
Mistee Humphreys Shelton said:
Yep...just like smiley said...i have to write everything down. I can't keep more than one thing in my head at a time anymore due to the drugs...so i keep a list of tasks and mark things off as i go.
I also reduced my hours...from five days a week down to four...i still get enough hours to qualify as full time and hence can keep my health insurance. The reduced stress is helpful to keep me from feeling overwhelmed. I'm off every tuesday, thursday, and everyother weekend...So most days i can comfort myself knowing "get through today, i'm off tomorrow" That means i only have to worry about today's list of task.
Finally, i know nothing about trileptal..so i may just be talking out my...uhm...'bum', but....i know that with some drugs it's better to just stay at the same dose all the time so that your body can eventually adjust to it and things get a little better side-effect wise. Is that practical for you? Of course, now i'm wondering if i could do that with my meds..lower em now and then when the pain isn't so bad....hmmmm? *scribbles another question for the doc*
Anyway...i know keeping up the duties of a job while dealing with TN is a bitch. I hope you find some things that work for you.
~Mistee
Cheryl, reading your response made me think of myself. I can't seem to spell anything right anymore. And speaking, oh my goodness, I can't get sentences out of my mouth for the lack of finding the words to say. What's really sad is my sentence could be a three word, 1st grade comment and I still can't get the words out. I feel like I have had a major stroke or something. I will even refer to objects as something completely different than they are... such as calling the computer mouse a remote.....
I just had to remind you that you aren't alone..... and thank you for sharing with me so I know I'm not crazy
lisa
Cheryl said:
Only every single day and I don't even have a job, lol. I don't think my dose of Gabapentin is even that high, usually 600 mg a day but I've just upped it since the 28th to first 700mg and now 800mg because the pain was getting worse and I'm feeling pretty high. I managed a walk with my dog today so that's good. I find that the mornings are the best for brain power for me and then it's anybody's guess how the rest of the day goes. I did a free trial on Luminosity today, playing brain games and it was a hoot, I might join. It's not too expensive either. I'm finding that my spelling skills are taking a dive and I used to be a good speller. Not to mention speaking, but that and trouble concentrating are real side effects of Gabapentin. Better that than the pain, for sure!
Thanks Lisa I needed that laugh and to know I'm not the only one either, I totally do that too. I think I'm just going to stick with calling everything "that thing". I'm hoping all this writing will kick start my vocabulary again. Another one that I do is switch words around like instead of saying crock pot I will say pot crock, I wonder if these nerves effect the brain?
What meds do you take? I've just upped my Gabapentin to 800 mg a day and I'm tripping, I might have to adjust to 700 mg. I'm a big girl but I'm just way too sensitive to these types of meds. At least we can laugh about it!!
Take care,
Cheryl
Me too. I am a teacher and management are doing all they can right now to keep me in work. Steroid injections are helping a lot right now but its always there. A horrible thing and I fear disability awaits me also at some point in my not too distant future. Its very hard but I focus on the wonderful highs in my life to continue putting one foot in front of the other xx
I've been on disability for about 5 years and I hate it when I'm asked what I do for a living. Cringe!
Especially when I don't look like anythings wrong. I am thankful for it though!
That's nice Helen that they are doing that for you!
Cheryl, I understand what you mean when you mention 'cringing'. We tend to put too much of an importance on what we do for a job... we tend to let that define who we are. You know who you are and hopefully your family and friends know and understand your situation. Hopefully you have found a 'one line' statement such as ' I am fortunate enough to take care of my grandson'.
Yes Cheryl I’m lucky x
To be happy I have felt that way too. The first 1-2 yrs were very dark for me. My youngest daughter who at the time was 14 had to go with me on the weekend to an emergency therapy session. It’s a sad sad thing what this can do to you. I’m still sad but I want to live. I want to watch my children grow and my grandchildren grow.
God found me when I was in that dark place. I wasn’t searching but He found me. That saved my life. I’m on your side and please hang in there.
I understand I really do. My life has flipped upside down. I’m angry so angry. I am working through the steps of grief. I have/am still in denial and anger.
Hi I am 54 on early retirement for past two years and was surprised with TN this year. I take 500mg Tegretol and 30mg Cymbalta. I have had a few good months of respite from the pain and the last few days it has decided to kick back up. But not with the vengeance where I can't eat or talk like last episode. Some learnings that have been really helpful as of late. Doing water aerobics about 5 times a week really kicks on the endorphins. Going to the coffee shop with my hubby and playing a mean game of cribbage. Things work for me in streaks. Like I felt there was a period where I needed to write everything done. Now I am using memory tricks like word association to remember names and other things. I have noticed that I can be thrown off my good habits and techniques with the holidays or vacations. I love the bullet journal idea. I think I can modify the idea for something online. For this new year my hubby and I recalled all the new things we experienced or learned over the year. Like I got a new computer with Windows 8.1 and I have enjoyed learning the new operating system. So keep a creative response to our problems and we can do that by helping each other. Keep posting!