One fear I have is going back to work as a zombie! I struggle with lethargy, memory issues and difficulty staying focused. I work with numbers all day so focus is critical. I’ve read that some take ADD meds to help with these issues. I really would appreciate feedback on the experiences of others.
Thanks so much!
I got the idea for Ritalin from one person here.
asked neuro for low dose Ritalin - and he didn't even blink an eye.... but I didn't read hardly anybody here that did this.
I only used it for a couple of months so I could read/remember researching for MVD... put Ritalin, or Adderall in the search box, maybe there is somebody besides me who had success with it.
I was also able to lower trileptal by using lidocaine
AND /
Or you could print off that list of our favorite meds and take it to your pharmacist --- they can show you what meds/combos won't have zombie land for you!
DEFINITELY ask for Ritalin. I did and it basically gave me part of my life back. Ask for extended release though.
Wow, I have never thought of using Ritalin on an "as needed basis" - What a great idea. I'll have to bring that up at my next doctor's visit.
When the dose/prescripion is correct, you should have no or few side-effects. Nothing will improve your memory - only excersises do.
Regards,
Walter
Such a good question. I would wonder if the aDD meds woudl counteract any other meds you take -- perhaps someone who has treid it will chime in,
This is a big fear fro me, however, prior to getting a good Dx and meds to reduce pain, I already had to stop working One problem was that everything I did exacerbated the pain; adn now ti is the meds that make me loopy - before, it was the constant pain itself,adn chronic sleep depriation. ;-(
But in particular, 'intelectual tasks', like reading, writing, typing... all made it worse.
One fear I still have is of not being able to be reliable, I place a high value on being dependable and following thrugh with my committemtns. But, I never know when there will be a flare-up. It's (like this thing ( the condition) has a life of its own independent of what I do, ir avoiding known triggers, etc.!.
Let's hope you hear from soemone who has deveklo9ped a way to cope w/ the grogginess,. ;-)
Good luck!
Myshka…that’s exactly how I feel! Just about everything sets off my pain, including deadline stress, making it very difficult to set up scheduled activities and follow through!!! For me, that inability to live the productive life that I need and desire is harder to deal with than the pain itself.
Kim…Thanks! ADD meds is something I haven’t thought of, I’m going to ask my neurologist!!!
Never knowing when an exacerbation of TN pain will strike definitely interferes with leading a life that includes making plans and being reliable. Since this monster came back within 9 months of my second MVD, my life has become that of a hermit. I was forced onto disability because I was unable to take ANY type of medication and still do my job as a CRNA (certified registered nurse anesthetist). I have had to cancel so many plans, been unable to have a phone conversation & disappointed so many people that no one even bothers to call me anymore. And all of my friends were in the medical field, knowledgeable and should understand the limitations of the disease. If it were not for my daughter living nearby and being somewhat understanding (and sometimes I feel it is only out of a sense of duty, as I am her mother), I would never have any interaction with other human beings. So Myshka & ML, I truly understand your frustrations. TN sucks.
Myshka that's exactly how I feel! Just about everything sets of my pain, making it very difficult to set up scheduled activities and follow through!!!!!!!
Isn't this drug normally prescribed for children. Adults that take it or I should say there is an issue about this drug acting like a mood elevator or amphetamine when adults take it. Adults of their own children dx'd with ADD steal this drug to get "high". Children settle down because they have a different metabolism and can concentrate at doing a task in school and be able to learn at the same pace as other children not dx'd with ADD.
I myself could see being able to do more than I can do but in the long run you have to come "down" from this drug. If my pain medication is supposed to work for me one of side effects can be sedation and drowsiness, and I see so many medications, even non-narcotics that simply state they believe they work because they cause sedation too.
Well I don't work because I am disabled from 13 plus surgeries for the spine, ATN is an add on from tmj surgery in '86, not sure. But for some of you that need to work and your meds control your pain but make you unable to concentrate perhaps this is an acceptable add on. Check with your doctor about this possibly being addictive. Sharon
I took adderall for ADD before I went back on trileptal and it did help. I’ve tried to just deal with the pain for 6 years but have now gone back on trileptal. I came off the ADD meds on my own for fear of addiction. My doctor let me regulate mine by myself. I got to where I was taking, though not excessive amounts, what I needed to get thru the day. I was on a timed release dose then she gave me a small dose to take throughout the day as needed. She trusted me to take only as needed. I have thought of going back on adderall since going back on trileptal. I agree with everyone about memory problems, focusing etc.
I took Ritalin with trileptal.....ritalin low dose, extended release -- if you are not sure to mix an ADD med and your TN med, ask pharmacist ---
My neurologist said that since his specialty is Epilepsy -- all those people take the meds we take, he said that they needed to be able to function, and if they couldn't, he let them take ADD med.
So between finding it works here - and getting blessing from my neurologist - I wasn't afraid of being a drug fiend.
It gave me energy and focus for the first time while having TN meds..... I was a TRILEPTAL ZOMBIE.... this tool helped me research for my MVD -- I can go back and look at my postings 3 years ago here, and see the ones where I was zombie out, no IQ, and no spelling! Ritalin gave me normalish functioning!
kim -- yeah, that's always been one fo the hardest parts f this for me! I have (almost, heh) accepted it now. I am very leary of scheduling anything.
ML said:
Myshka...that's exactly how I feel! Just about everything sets off my pain, including deadline stress, making it very difficult to set up scheduled activities and follow through!!!!!!! For me, that inability to live the productive life that I need and desire is harder to deal with than the pain itself.
Kim...Thanks! ADD meds is something I haven't thought of, I'm going to ask my neurologist!!!
So sorry, your losing your carrer as CNRA. IT is most disapp0ointing to realize that those in the medical community did not have better understanding of your situation. And when we are surrounded by people involved in our occupation, it's also like losing your 'tribe' as well as friends. I do understand; chronic pain condition is so isolating! I sometimes wonder how to deal w/ my life as a hermit..... I volunteer about two hours, 2X/wk at a botanical garden, and did it for a few years before things got well under control enough that I really knew I could make it there without pain interrupting and sending me homw in tears before I'd even arrived!! whew! When I want to feel batter, I look back at that situation and am just glad it is not THAT bad anymore, generally.
Not Again said:
Never knowing when an exacerbation of TN pain will strike definitely interferes with leading a life that includes making plans and being reliable. Since this monster came back within 9 months of my second MVD, my life has become that of a hermit. I was forced onto disability because I was unable to take ANY type of medication and still do my job as a CRNA (certified registered nurse anesthetist). I have had to cancel so many plans, been unable to have a phone conversation & disappointed so many people that no one even bothers to call me anymore. And all of my friends were in the medical field, knowledgeable and should understand the limitations of the disease. If it were not for my daughter living nearby and being somewhat understanding (and sometimes I feel it is only out of a sense of duty, as I am her mother), I would never have any interaction with other human beings. So Myshka & ML, I truly understand your frustrations. TN sucks.Myshka that's exactly how I feel! Just about everything sets of my pain, making it very difficult to set up scheduled activities and follow through!!!!!!!
This disability can be very isolating if the pain is coming and going. I have over the course of the last 3 years have let people know up front that I have a chronic neurological pain condition and will be happy to attend if I am able to. It has made my social network quite small but it is better then none at all. Tell the people you can't talk to because of the pain that you would prefer to online chat. As for your "friends" in the medical field shame on them and I think you will find that your true friends will come from places you never imagined. Yes TN sucks, but don't let it make a hermit out you and even though we are just a group of folks on a web site …we care!! Hang in there>
Not Again said:
Never knowing when an exacerbation of TN pain will strike definitely interferes with leading a life that includes making plans and being reliable. Since this monster came back within 9 months of my second MVD, my life has become that of a hermit. I was forced onto disability because I was unable to take ANY type of medication and still do my job as a CRNA (certified registered nurse anesthetist). I have had to cancel so many plans, been unable to have a phone conversation & disappointed so many people that no one even bothers to call me anymore. And all of my friends were in the medical field, knowledgeable and should understand the limitations of the disease. If it were not for my daughter living nearby and being somewhat understanding (and sometimes I feel it is only out of a sense of duty, as I am her mother), I would never have any interaction with other human beings. So Myshka & ML, I truly understand your frustrations. TN sucks.Myshka that's exactly how I feel! Just about everything sets of my pain, making it very difficult to set up scheduled activities and follow through!!!!!!!
I was put on Ritalin for memory loss and short term memory problems. But the drug went against my bp meds. It caused my heart rate to incease. I had to be take to the the ER. They had to slow my heart rate down. My bp had droped 70/40. They said that some times Ritalin don't mix with some meds. I have a hard time with Prescrictions.
I hope others don't.
After 6 years...even those who feign understanding do not bother any more. I had just moved out here when the monster came back, and then had only another 9 months after the repeat MVD, so I had not made any good friends before I was forced out of work and onto disability. My previously limited social network has shrunk down to zero. Thanks to chronic pain, I no longer enjoy anything anymore.
Christina said:
This disability can be very isolating if the pain is coming and going. I have over the course of the last 3 years have let people know up front that I have a chronic neurological pain condition and will be happy to attend if I am able to. It has made my social network quite small but it is better then none at all. Tell the people you can't talk to because of the pain that you would prefer to online . As for your "friends" in the medical field shame on them and I think you will find that your true friends will come from places you never imagined. Yes TN sucks, but don't let it make a hermit out you and even though we are just a group of folks on a web site …we care!! Hang in there>
Not Again said:
Never knowing when an exacerbation of TN pain will strike definitely interferes with leading a life that includes making plans and being reliable. Since this monster came back within 9 months of my second MVD, my life has become that of a hermit. I was forced onto disability because I was unable to take ANY type of medication and still do my job as a CRNA (certified registered nurse anesthetist). I have had to cancel so many plans, been unable to have a phone conversation & disappointed so many people that no one even bothers to call me anymore. And all of my friends were in the medical field, knowledgeable and should understand the limitations of the disease. If it were not for my daughter living nearby and being somewhat understanding (and sometimes I feel it is only out of a sense of duty, as I am her mother), I would never have any interaction with other human beings. So Myshka & ML, I truly understand your frustrations. TN sucks.Myshka that's exactly how I feel! Just about everything sets of my pain, making it very difficult to set up scheduled activities and follow through!!!!!!!
I understand the zombie effect. My family kind of laughs when I ask the same question over. I like to do watercolour painting and writing, but it's really hard to gear up the stamina to get back into it. It takes an emotional stamina too, and that's hard when it's difficult to focus. I'm also recovering from a huge back surgery, so I feel like a medicinal potpourri! I've pulled out of a lot of activities because I hate being unreliable too.
Kate, this drug is for children normally but I suppose if you are still ADD as an adult it is prescribed. It is well known fact that parents of children with ADD that have drug addictions take their children's meds to get "high" on this drug. It acts like an amphetamine in people who are not ADD. I would never take it as I know my heart would race too and I do take BP meds.
I am also post-op failed back surgeries 7 plus times. I understand what it is like to be older, 58, and dealing with aging issues with all the issues I am having from back surgery and ATN, also atypical GN. I need a decompression of my lumbar spine again, have not had surgery since '09 so actually managing, the surgery in '09 was successful. I feel like an old horse that has outlived it's usefulness but needs some patching up once in a while. I am a grandmother and have had to give up visiting them 2x a week. I am hoping this surgery will at least get me back up on my legs again. I can get comfortable down on cold packs but bam out of nowhere this ATN flares up. I don't know which one is worse. Before my back started bothering me again I was isolating myself with this ATN.
It is stress, whether it is good stress or bad aggravates mine. Peace and quiet for me please although I do enjoy my grandkids, 3 and 1 in small doses. I was babysitting but had to tell my daughter she could not depend on me anymore. That was hard to give up. And my pain meds were increased so I won't be asked even if I do well after this surgery for my back. Yep, it stinks not being reliable anymore. So I have a little dog to take of, just me, I am widowed and that's the way it is. I am a big fan of ON DEMAND series. I also love to paint but that is on hold. Sharon
I see I am on a page of many who are isolated from family and friends because of this hideous disease. I do not plan, I do not get invited very often either. I am on disability.
I just told my daughter I felt like I was living on Mars because I have no social life and have had to give up my 2x a week visits to my grandkids.
I do know I am not alone in my struggles when I start to read other sufferers stories and so many of you are having a harder time than I am having. It really gets complicated when you get older and have to deal with aging issues, post-op issues and then dealing day to day with TN or ATN and also GN and ON. I have atypical GN too. My pain is not the stabbing, electric shock like pain, it is 24/7 building in intensity ATN and GN. Sometimes it feels like spasms but I think that is the tmj getting aggravated.
After I get patched up with a decompression of my lumbar spine, I had a successful one in '09, no surgeries for almost 5 years and then back up on my legs again I am going to resume my search for PNS for my atypical TN and GN.
I have one comment regarding those sufferers who have to work and are getting brain fog from the meds they take that thankfully are controlling your pain...if this drug for ADD helps you get through your work day without side effects then great. This is the first time I have heard this drug is being used for adults. Sharon
Kate said:
I was put on Ritalin for memory loss and short term memory problems. But the drug went against my bp meds. It caused my heart rate to incease. I had to be take to the the ER. They had to slow my heart rate down. My bp had droped 70/40. They said that some times Ritalin don't mix with some meds. I have a hard time with Prescrictions.
I hope others don't.
I see all these responses are very positive for adding this drug...carefully though. That is wonderful. I can still spell but I have never been on a dose of any of these drugs that was therapeutic, I always bombed from side effects. If I happen to find one that works for me but gives me brain fog, hek, yes, I will ask for this drug as needed. I do not work. I was concerned about addiction but I have no room to say anything as I am being treated with narcotics...carefully, my pain doc will not elevate short-acting pain meds, when tolerance starts he adds a time-released narcotic. My cognitive functions and just short of asking me to skip are checked to be sure I am not over medicated.
As I get older, who knows what I might need, I have had brain fog from narcotics years ago going thru 7 surgeries, that drug would have been helpful. I was falling asleep all the time. Good to know something like this is being done. Sharon
Lisa said:
I took adderall for ADD before I went back on trileptal and it did help. I've tried to just deal with the pain for 6 years but have now gone back on trileptal. I came off the ADD meds on my own for fear of addiction. My doctor let me regulate mine by myself. I got to where I was taking, though not excessive amounts, what I needed to get thru the day. I was on a timed release dose then she gave me a small dose to take throughout the day as needed. She trusted me to take only as needed. I have thought of going back on adderall since going back on trileptal. I agree with everyone about memory problems, focusing etc.
Christina, I like your comment that we are not just a bunch of folks on a website. I have been responding to discussions, asking and providing info and experiences with this rare pain. I am beginning to know who some of you are by your name after 2 years of being a member. I know who you are, what your pain is like, your history and current outlook on where you are going for help like medication changes or procedures and alternative treatments.
I think I unload a lot of crap here too....just the frustration and sometimes just respond to someone who is somewhat like me and go on and on....there is no one for me to talk to about this, you can't see it. I am severely disabled from failed back surgery, crippled from nerve injury, do not have a normal spine, walk with cane, need a wheelchair, have lost almost 4 inched in height and this one I don't have to mention, it can be seen. But even this one is thought to be pain free as in I always say most of the time I am doing ok, sometimes I just say three words, "not so good" No one wants to hear about it.
I have been living with moderate to severe chronic pain since I was 23. I will be turning 58 next month. I have met older men or women who at 88 or 90 tell about their 30 plus year of agony in pain and then they are pain free. Here's to the next 30 years! I am surviving no matter what, yes, I do enjoy life, I do have enjoyable times, life is a precious gift. Disease is part of God's world...I won't live forever, one day I will go home. I don't have pain when I am sleeping, that is a blessing, my time out to dream and I get to run!
I can bear all to my friends on this site. God bless you all! Sharon