My 9-year-old son was diagnosed with TN two years ago. He has been taking Trileptal. When he first started Trileptal, he was a bit cranky, but we were so happy that we finally had a diagnosis, and the medicine was working so we thought we could deal with a little crankiness. Over the last two years, as my son has grown, he has needed to increase his dose. Unfortunately, when we tried to increase last summer, he was so moody that we decreased the dose again. But for better pain management’s sake, we did have to move forward with the increase last winter. Since that time, my son has been so irritable. He has a very short fuse and will get extremely angry at the slightest thing. He overreacts to minor incidents. He’ll throw things, scream, cry, etc. He also has trouble sleeping sometimes. He doesn’t listen well, and often says mean things. Sadly, he’s not the same kid before the Trileptal increase. His neurologist says this is the “disinhibited” effect of Trileptal and has had us try various things. He has had us change the time of day for his AM and PM doses. We’ve split up the doses differently, making the PM dose the larger dose. He even added Intuniv which was a disaster. My son was even more more moody, tearful and sometimes lethargic on Intuniv. The Trileptal has worked pretty well in controlling my son’s pain, and the neurologist doesn’t think we’ll have as good of pain management with any other medications. But my son has turned into a handful. We just don’t know what to do next. Has anyone else had this experience with Trileptal? What did you do? I’d really like to have my sweet, loving son back.
I do not have experience with your sons drugs, I have been on Gabapentin and luckily have had success with it, to some degree, some break throughs, but all in all liveable compared to before diagnosis. Could they try this one? Bless his heart at such a tender age to be dealing with this, be patient with him as I see from your post you are. This pain is undescribable. Add to that side effect of meds, tough. I truly believe if one med is not working in all ways worth a shot to try another. Wish I had magical advice, I can only say we are here for you and your son, care very much and will be praying.
First let me say poor baby! my heart is breaking for him. I do believe that is the medication that made me screaming angry. I just switched. I felt so badly from the anger too. It was just an additional nightmare. I went through many meds until I found a combo that helped the pain but kept me the most unimpaired. Good luck. Hugs.
I am very sorry that your son and family is having to deal with this, I honestly can not imagine having so much pain as a nine year old.
Hopefully others that will be of more help will post soon but I will just add a few thoughts.
I can relate to the lethargy and I have various cognitive issues that are related to the medications. Balancing the pain with the side effects is difficult in an adult and must be considerable harder with a child.
I wonder why the neurologist doesn’t think other medications will work??? Are you seeing a pediatric neuro? I imagine that finding someone that has experience working with children and TN would be very difficult, if not impossible.
It has taken me several years of juggling medications to find a more successful combination, I take trileptil, lyrica and endep and have done much better than when I was one just one medication at a time.
I also wonder if your might find it helpful to talk to someone that could help him deal with his pain and find more appropriate ways of expressing how he is feeling. The medication changes you but so does the pain. Living with chronic pain as you know is very hard for your son but it have massive effects on the whole family.
Your son is blessed to have you, it must be very difficult and exhausting as a parent so remember to take care of you.
Not sure that I have been of any help but I wanted to give you my support.
Sending you all a big hug
Trish
Thank you so much for your kindness. I'm so grateful for your suggestions and encouragement. It means a lot. We do have a pediatric neurologist (And yes, it sure was difficult to find a pediatric neurologist who had even dealt with TN.). We have an appointment next Friday. He had discouraged us from other medications since the Trileptal worked well on the pain. But I think we'll press a little further about our medication options, and I'll definitely ask about the gabapentin. The neurologist hadn't mentioned that one. Thanks again for your support. I feel very blessed!
Betsy Carlson said:
I do not have experience with your sons drugs, I have been on Gabapentin and luckily have had success with it, to some degree, some break throughs, but all in all liveable compared to before diagnosis. Could they try this one? Bless his heart at such a tender age to be dealing with this, be patient with him as I see from your post you are. This pain is undescribable. Add to that side effect of meds, tough. I truly believe if one med is not working in all ways worth a shot to try another. Wish I had magical advice, I can only say we are here for you and your son, care very much and will be praying.
Karen,
KC dancer did a summary of medication options, I cant find the topic at the moment but will keep looking. Hopefully she will be soon.
Hi Karen,
First, after reading this I had to step back for a good cry and a prayer for your son. I have two children - 15 & 10 - and it would absolutely be my worst nightmare if one of them had this instead of me.
I was diagnosed back in January and luckily just 4 days into this horrific pain. I went to my Dr. instead of my dentist that 1st day because my Dentist is closed on Mondays. My life would have taken a different turn I think had I seen my dentist first. She then referred me to a Neurologist and then after 4 days of the worst pain ever and more, I was on Trileptal. It did an awesome job almost right away for about 6-8 weeks. I was tired and my energy dropped but all seemed pretty good. Then of course the pain started to break through. At the start just here and there and mostly manageable but then the game started of upping my dose, side effects got worse initially but pain was managed, then breaking through again, then upping my dose . . on and on. I got all the way to 1800mg on Trileptal and not only was it not doing a great job of managing my breakthrough pain, it was giving me a "drug dump" of a euphoric, stoned feeling at nearly every dose. I had to take many pills spread out throughout the day to stop breakthrough pain so these drug effects were frequent. I also had the cognitive difficulties, mostly memory problems, which left me very frustrated. This is all in the first couple of months of being diagnosed. In May, I was switched to Tegretol ER and a new neurologist. Like Trileptal, this drug was a knockout initially for relieving pain but have started the game of upping that med already and am up to 1000 mg already. It is extended release, which greatly helps with the drowsiness and drug-like effects but the cognitive effects are worse than Trileptal. I forgot how to drive to a friends house last weekend, having to walk my way through it step by step and have had moments when I cannot find the words at all.
What I'm trying to get at here is that the drug side effects are horrible and frustrating. I have a hard time dealing with them at 44 and at least at my age I have the perspective to know that it is just the drug and not me. Another thing about the drugs is that they seem to control the pain about 75% of the time, sometimes better, sometimes worse. I have breakthrough pain most days. Sometimes it's just a little blip, sometimes it's off and on throughout a day. I have no notice or control of when, where and how intense this will happen. It never has touched the pain I had the first 4 days but it scares me that it might get there.
The initial pain of TN, unmedicated, is so terrifying that I think your son's memories of that may scare him even when he has a tiny breakthrough of pain. I honestly think that your son's anger and irritability might have as much or more to do with the pain than the meds.
My neurologist wants me to take more meds at night too but I instead spread it out during the day because the pain control is better. The Trileptal might be wearing off and he may need a new drug or layering with other drugs.
For me, after 7 months now with TN, I couldn't take it anymore and have scheduled an MVD for October. That might be an option for him way down the road as I think his age might be too young. But I can feel his pain, understand his frustration, his anger, his irritability and all because that is so much of what I've felt these last 7 months. I fortunately have the benefit though of 44 years to help me navigate all of this.
When I was first diagnosed with this and did a little researched, the thought I've always come back to is what about the children who have this? TN is very rare and even rarer for children but they are there and need even more support and help than the rest of us. I will continue to pray for your son and for you. Please use this group as support for your entire family and thank you for coming here.
Hi there! #1 suggestion - have gp or neuro call in prescription lidocaine cream for topical relief!!!! I was able to lower my trileptal from 900 to 600 doing this
I will attach the link for the other hundred meds people have found on here in the last two years that helps!
Question -- and please don't be offended....as a professional, is there any chance your son may be genetically loaded for a mood disorder or aspergers? I have a kiddo - was on trileptal for mood at 9... Trileptal has many uses.
But regardless, if the topical doesn't help you to reduce and see if trileptal can be lowered, time for a new med or new doc?
Keep Posting -!!!!!
Thank you! That's helpful. All the best to you!
Thank you so much. I appreciate the support and the prayers! My heart really goes out to you. I hope you find much better relief with the MVD. I'll certainly ask about that as a solution for Jonathan down the road. I really am so grateful for the suggestions. My prayers are with you as well. Hang in there!
mybell said:
Hi Karen,
First, after reading this I had to step back for a good cry and a prayer for your son. I have two children - 15 & 10 - and it would absolutely be my worst nightmare if one of them had this instead of me.
I was diagnosed back in January and luckily just 4 days into this horrific pain. I went to my Dr. instead of my dentist that 1st day because my Dentist is closed on Mondays. My life would have taken a different turn I think had I seen my dentist first. She then referred me to a Neurologist and then after 4 days of the worst pain ever and more, I was on Trileptal. It did an awesome job almost right away for about 6-8 weeks. I was tired and my energy dropped but all seemed pretty good. Then of course the pain started to break through. At the start just here and there and mostly manageable but then the game started of upping my dose, side effects got worse initially but pain was managed, then breaking through again, then upping my dose . . on and on. I got all the way to 1800mg on Trileptal and not only was it not doing a great job of managing my breakthrough pain, it was giving me a "drug dump" of a euphoric, stoned feeling at nearly every dose. I had to take many pills spread out throughout the day to stop breakthrough pain so these drug effects were frequent. I also had the cognitive difficulties, mostly memory problems, which left me very frustrated. This is all in the first couple of months of being diagnosed. In May, I was switched to Tegretol ER and a new neurologist. Like Trileptal, this drug was a knockout initially for relieving pain but have started the game of upping that med already and am up to 1000 mg already. It is extended release, which greatly helps with the drowsiness and drug-like effects but the cognitive effects are worse than Trileptal. I forgot how to drive to a friends house last weekend, having to walk my way through it step by step and have had moments when I cannot find the words at all.
What I'm trying to get at here is that the drug side effects are horrible and frustrating. I have a hard time dealing with them at 44 and at least at my age I have the perspective to know that it is just the drug and not me. Another thing about the drugs is that they seem to control the pain about 75% of the time, sometimes better, sometimes worse. I have breakthrough pain most days. Sometimes it's just a little blip, sometimes it's off and on throughout a day. I have no notice or control of when, where and how intense this will happen. It never has touched the pain I had the first 4 days but it scares me that it might get there.
The initial pain of TN, unmedicated, is so terrifying that I think your son's memories of that may scare him even when he has a tiny breakthrough of pain. I honestly think that your son's anger and irritability might have as much or more to do with the pain than the meds.
My neurologist wants me to take more meds at night too but I instead spread it out during the day because the pain control is better. The Trileptal might be wearing off and he may need a new drug or layering with other drugs.
For me, after 7 months now with TN, I couldn't take it anymore and have scheduled an MVD for October. That might be an option for him way down the road as I think his age might be too young. But I can feel his pain, understand his frustration, his anger, his irritability and all because that is so much of what I've felt these last 7 months. I fortunately have the benefit though of 44 years to help me navigate all of this.
When I was first diagnosed with this and did a little researched, the thought I've always come back to is what about the children who have this? TN is very rare and even rarer for children but they are there and need even more support and help than the rest of us. I will continue to pray for your son and for you. Please use this group as support for your entire family and thank you for coming here.
Wow! Adding the lidocane cream and reducing the Trileptal is an awesome idea to explore! Certainly that's a fair question about mood disorders. His 12-year-old brother has ADHD which certainly affects his mood, and we did look at that and other mood disorders just to rule things out. But Jonathan's symptoms came on so immediately with the Trileptal increase the first time last summer, and diminished when we went back to the lower dose. Then the symptoms came back on again when we had to go with the inreased Trileptal. So we had to conclude that it was the Trileptal. But thanks for asking.
Kc Dancer Kc said:
Hi there! #1 suggestion - have gp or neuro call in prescription lidocaine cream for topical relief!!!! I was able to lower my trileptal from 900 to 600 doing this
I will attach the link for the other hundred meds people have found on here in the last two years that helps!
http://www.livingwithtn.org/forum/topics/for-those-on-the-medicaion...
Question -- and please don't be offended....as a professional, is there any chance your son may be genetically loaded for a mood disorder or aspergers? I have a kiddo - was on trileptal for mood at 9... Trileptal has many uses.
But regardless, if the topical doesn't help you to reduce and see if trileptal can be lowered, time for a new med or new doc?
Keep Posting -!!!!!
Karen, just thinking about you and Jonathon, I don't have human kids, saw our neighbors kids play outside today while I was doing yard work and it made my heart hurt to think what he is going through at such a tender age and you as a parent. So I just wanted to add a few more thoughts...when you read about TN, let alone experience it, it is all doom and gloom, and there are days! But with that said there is life and I want you and your son to know that. I do have times I just ask why me...but it is me so I have to keep on. I truly believe anger is a huge part of this because the pain is so and the why me is so...I can't imagine as a child, but I know you and Jonathon can find help and he is so blessed to have such an obviously special Mom! I don't want to sugar coat, TN is awful, but you have a diagnosis and that is the first step towards help and as all said, don't stop, if one DR can't help, as hard as it can be keep looking and you sound like you will do just that! Repeat for those that know my story but wanted to share with you...my husband was in the hospital 2 1/2 years due to medical procedure gone wrong, diabetic... leg amputated, kidney failure, lost 40% of foot that he has, still wounds, long story, in a wheelchair, only 52. Home now I am his caretaker, how did I get through all this and keep going with TN, somehow I did and do, I continue to train dogs, show dogs and most of all my own beloved Saint Bernards who are doing great at shows and also do therapy work at nursing homes. I have days my anger management needs some real adjusting, but those are much fewer than days I keep on. I increase my Gabapentin when I need to, decrease during remission times, have no insurance, but blessed with a DR from all of my husbands issues knows situation and helps me...sometimes help comes from someone you are just blessed with! Love and care about everyone here, your situation has been on my mind a lot, bless his heart. Please keep us posted and feel free to e-mail me anytime, vent or anything. Between having TN and being a caretaker I understand both sides! We care. Betsy
That list of meds link I gave you… There are some meds that you just add on as needed of times of high pain…just not having to take them all the time…
Some meds that were to help my sons Emotional seizures and mood. Did the opposite…please let us know what happens!
I definitely feel the love and understanding. Thank you for that Betsy. I really appreciate the encouragement....and we will keep pressing on until we find the right answers for Jonathan! I feel very blessed to receive such wonderful support from such strong and courageous people as yourself!
Betsy Carlson said:
Karen, just thinking about you and Jonathon, I don't have human kids, saw our neighbors kids play outside today while I was doing yard work and it made my heart hurt to think what he is going through at such a tender age and you as a parent. So I just wanted to add a few more thoughts...when you read about TN, let alone experience it, it is all doom and gloom, and there are days! But with that said there is life and I want you and your son to know that. I do have times I just ask why me...but it is me so I have to keep on. I truly believe anger is a huge part of this because the pain is so and the why me is so...I can't imagine as a child, but I know you and Jonathon can find help and he is so blessed to have such an obviously special Mom! I don't want to sugar coat, TN is awful, but you have a diagnosis and that is the first step towards help and as all said, don't stop, if one DR can't help, as hard as it can be keep looking and you sound like you will do just that! Repeat for those that know my story but wanted to share with you...my husband was in the hospital 2 1/2 years due to medical procedure gone wrong, diabetic... leg amputated, kidney failure, lost 40% of foot that he has, still wounds, long story, in a wheelchair, only 52. Home now I am his caretaker, how did I get through all this and keep going with TN, somehow I did and do, I continue to train dogs, show dogs and most of all my own beloved Saint Bernards who are doing great at shows and also do therapy work at nursing homes. I have days my anger management needs some real adjusting, but those are much fewer than days I keep on. I increase my Gabapentin when I need to, decrease during remission times, have no insurance, but blessed with a DR from all of my husbands issues knows situation and helps me...sometimes help comes from someone you are just blessed with! Love and care about everyone here, your situation has been on my mind a lot, bless his heart. Please keep us posted and feel free to e-mail me anytime, vent or anything. Between having TN and being a caretaker I understand both sides! We care. Betsy
Hi Karen,
I’m sorry your son and family are experiencing this. It’s such a rough rocky ride at times. I believe the particular drug your son is currently taking is the same drug Bruce Banner took to turn into the hulk. I had a very bad temper and short fuse on that drug. I was snapping at everyone near me. It was almost an out body expirance to be honest. Everything would set me off. It was not till I looked at the side effects for Tripitile that I realized it was from the medication.
I would suggest trying another medication if his mood or anger is out of control. Either add in another medication to lower the dosage of tripitile or switch medications completely. Yes the goal is to lower and gain managment over the pain, but at the same time the side effects should not become such an overshadowing problem on top of it. You might want to ask him how he feels about the medication after he takes it. He might beware of his mood changes as well, he might surprise you. Talk with his doctor about it was well and go in with a list of other drugs. You might want to look these medication side effects up.
I wish I had some more solid advice to give you but that’s really all I can think right now.
Hope it helps you even if it is a little.