Welcome, Friend!

It looks like you're new here. If you want to get involved, click one of these buttons!

Veritas-Health LLC has recently released patient forums to our Arthritis-Health web site.

Please visit http://www.arthritis-health.com/forum

There are several patient story videos on Spine-Health that talk about Arthritis. Search on Patient stories
Protect anonymity
We strongly suggest that members do not include their email addresses. Once that is published , your email address is available to anyone on the internet , including hackers.

All discussions and comments that contain an external URL will be automatically moved to the spam queue. No external URL pointing to a medical web site is permitted. Forum rules also indicate that you need prior moderator approval. If you are going to post an external URL, contact one of the moderators to get their approval.
Attention New Members
Your initial discussion or comment automatically is sent to a moderator's approval queue before it can be published.
There are no medical professionals on this forum side of the site. Therefore, no one is capable or permitted to provide any type of medical advice.
This includes any analysis, interpretation, or advice based on any diagnostic test

My son Zach - Trigeminal Neuralgia and Neurontin

TTLCTTTLC Posts: 876
edited 06/11/2012 - 8:36 AM in Chronic Pain
Hi everyone,

I looked through the forums and couldn't decide where to post this, so I decided this would be the best forum... as this is a chronic pain condition.

My 15 year old son, Zach, was just diagnosed today with Trigeminal Neuralgia. Zach has been prescribed Neurontin to take twice a day, starting with the first dose tonight.

Since Zach was 5 years old, he started having migraines. He didn't have them often enough for his pediatrician to prescribe a daily medication for him to take. We were told to give him Tylenol and Advil at the same time, as soon as his right eye started to hurt and have been doing this for 10 years. I have charted his diet and activities over the years, to see if anything triggers his migraines. Since there has been no correlation with his diet or activities, the pediatrician has said it is probably genetic. (Zach had scans done on his head years ago to rule out tumors). Zach has been able to participate in sports and makes excellent grades.

Last Thursday, Zach started complaining of severe cheek pain. At first we thought it could be allergies and sinus related. He took several hot showers a day and we put the vaporizer in his room. We tried nasal sprays and also the Tylenol and Advil combination. I then wondered if it could be related to his teeth. He has regular check ups with his orthodontist, so I went ahead and got him in Wednesday morning. They took Xrays and nothing showed wrong with his teeth or the sinus area he had pain in. (Zach was running no fever and had no suspicious sinus discharge over the past week). Wednesday night, Zach took a turn for the worse. Mike had to take him to the ER at 9:30pm, as the kid was in excrutiating pain. They returned home with a prescription for Vicodin and the attending physician referred him to a well-known Pediatric Neurologist. We were lucky to have a cancellation this morning with the Pediatric Neurologist and Zach was able to be seen right away. The Neurologist is awesome, plays golf with our Pediatrician and feels Zach will do very well with the Neurontin. I am relieved, as it's been horrible to watch this kid suffer when he gets migraines and to see him in pain with his cheek... well, you just feel completely helpless. :(

My questions are... does anyone have this diagnosis and are there any "bad" side effects with this medication? He will be taking nerve medication for the rest of his life, which is fine and Zach is fine with this too. This all is brand new to us and just would like any feedback from others?

Thanks a bunch,

Tammy :)

P.S. I was out and about for 3 hours today without my walker or wheelchair. I'm a bit sore, but isn't it amazing what adrenaline can do? I would have RAN with Zach to see this specialist, if I had to. But, I held on tight to Mike's arm and made Zach carry my heavy purse... lol!



  • you hate to see your youngster zach in pain. i have no comment on the drugs but just wondered if you have tried ice on his eyebrow...pete
  • Dear Pete,

    Yes, we have tried ice over the years and many other things. Cold washcloths, warm washcloths, dark and quiet room for the migraines, etc. His migraines, according to my graphs, will spike in the fall and spring months. They have never been more than 5 in a month... generally around 2. But, they are severe. If he doesn't take the Advil or Tylenol right away when his eye starts to hurt (the pain is behind his eyeball), he will throw up. He hasn't had a really bad migraine for several months.

    This new cheek thing over the past week, threw me for a loop. I am glad he has a diagnosis and Zach is, too. He eats very healthy, hates to take pills... but, he knows this is necessary to help with the migraines and the newly diagnosed Trigeminal Neuralgia. Pete, he was in tears Wednesday night and Zach is one tough kid. :(

    We are reading through the leaflet now on the Neurontin. He starts it tonight and will begin taking it in the morning and at night, Sunday.

    If you can think of anything else, please let me know. I'm always welcome for new ideas.

    Thanks, Pete. :)

  • I'm sorry to hear about your son Zach's migraines. Unfortunately, my family suffers from the type of migraine that you are describing. I'm the luckiest in my family in that I do not have as many as my brothers. Stress is a huge trigger for us and once one has a hold of you, they usually last anywhere from 3 to 5 days in duration if not treated in the early stages.

    When I have an episode, I usually take what I call an aspirin bomb (approx 2000 to 2500mg), whereas my brothers have tried the more conventional prescriptions out there, i.e. Imitrex. One of my brothers was recently started on Topamax for his migraines.

    I've never heard of Neurontin for migraines, so I hope it works for him. Just so you know, it takes a bit of time for Neurontin to build up in your system before it starts to work.

  • There is nothing worse than seeing your child in pain. I feel so bad that he is having this happen to him this young in his life. But at least you got it looked at and hopefully found a solution for him. I know how you feel. Even as bad as we feel, we would rather have it added to our "tab" than have them deal with it. Hope you are holding up through all of this. It is hard when you dont feel well yourself. Take care Tammy. Love, Robin
  • yes i have another idea. i had terrible headaches that came in fall and spring and i'll tell you they were 10's too. my dr gave me low dose of atenolol which ended headaches completely. i guess the blood vessels and nerves are real close and if you can stop ponding in the blood vessels it can help pain....
  • Having suffered Occipital Neuralgia for many years, I wound up learning a lot about Trigeminal Neuralgia in the process. TN has been researched for decades and there is a lot of fantastic literature on it. There is also a fantastic on line forum for support strictly for those suffering TN.

    Neurontin (Gabapentin)works great for Occipital and Trigeminal Neuralgia. It was like a wonder drug for me when the neurologist started me on it. The only concerns with long term use (according to 3 neurologists), is ensuring calcium is supplemented (with Vit D) and that hydration is well maintained.

    There are many different triggers for TN, some as simple as smiling, taking a bite of food or grimacing. It's not a fair for someone so young to be burdened with this. The good thing is, that it is easily treatable with non-narcotic meds and there are surgical procedures if sometime down the road the meds quit working.

    Feel free to PM me if you'd like info on the TN forum.

  • I'm so sorry about your son's problems & pain. I have take gabapentin for almost 20 years now off and on. My PCP switched me to Lyrica when it became available for fibro, but it was too expensive, and I gained weight like mad on it. So we switched back to neurontin. I have had NO problems or side effects from it.

    You do have to build up the dosage slowly, as uf you take a large dose right away it can cause side effects. Right now I am on 300mg tablets 3x a day, + 2 at bedtime. It helps a lot.

    I'll say a prayer for Zach tonight, and ask that this helps him with the TN and pain. "C" is right that stress increases the pain, and I think hormones do too. Things might level out as Zach matures.

  • Dear Dave,

    Thank you for sharing your story and the history with migraines. We never tried the asprin bomb, but whatever works... by all means take it. I really appreciate the information on the Neurontin. This is a new drug to our family, but one we feel is going to help Zach.

    Here is a message from Zach:

    From Zach: Thank you, Dave. Sorry you have migraines, too. I slept really good last night. I appreciate the info on the meds... kinda nervous about taking them, but know I have to. Thanks again.

    Thanks, Dave!

  • Dear Robin,

    Yes, you are right. Seeing this kid suffer with migraines since he was 5 years old, has been rough. The relief I feel today, is awesome! I slept so good last night. I was physically exhausted from being out and about without my walker or wheelchair, so I know that contributed to sleeping well. I have prayed for God to give me Zach's pain over the years, but I guess He didn't want that. Instead, we were led to this fantastic doctor who gave Zach the medicine he needs.

    Message from Zach:

    Hi Robin. How are you? Mom tells us all about you. I lived in Lime Springs for a little while with my dad. Where are you at? Thank you for the nice message. I hope you feel better soon. You have been through a lot.

    Thanks for the message, Robin. I'll send you a PM in a little bit.


  • Dear Pete,

    Thank you for the additional advice. We are going to give this Neurontin a try and will pray it does the trick for Zach. He slept really good last night... I think we all did.

    Message from Zach:

    Hey Pete. How are you? Thanks for tips. I hope your headaches stop. They bite.

    Thanks again, Pete.

  • Dear "C",

    THANK YOU! I will definitely PM you for the site address. I am glad to hear that the Gabapentin works great for your pain. To witness a person in pain from these ailments, is absolutely horrible. We are very hopeful that this medicine will do the trick for Zach.

    Everything that you mentioned... has triggered the cheek pain with Zach. Even brushing his teeth. He has one year left with his braces, so at first I was wondering if the pain was from his last Orthodontist visit. But, it didn't add up. It had been weeks since his last visit. I thought it was his sinuses, but again, he had no sinus discharge or a fever. This episode threw me for the biggest loop and no matter what we did, nothing was touching his cheek pain. This diagnosis makes sense and we are so thankful Zach will no longer have to suffer. We know it will take some time for the drug to build up in his system and hey, that's fine.

    Thanks so much for sharing "C" and I am glad this medication has worked wonders for you.

    Message from Zach:

    Hi "C". Thank you for the message. Sorry to hear that you have suffered like this. It feels like ice picks stabbing behind my eyeball when I have migraines. This cheek pain feels like little ants carrying ice picks and stabbing the cheek bone. My jaw went a little numb in one place. Weird. Glad this medicine works for you. I think it will work for me too. Mom and I will check out the website.

    Many thanks, "C".

  • Dear Maggie,

    Thanks so much for your message. It really helps to hear about others who are taking this medication. Zach hates to take pills and is curious to know what this drug "is all about". Our home life is pretty laid back and routine since school started with Zach and Nikki. Zach does stress at times, as he is an over-achiever. He always has been. He's been freaking out over missing school, but we are fortunate that his high school posts the class assignments online. He can do all of his homework and make up the tests he missed.

    Message from Zach:

    Thanks Maggie. Your name reminds me of the Rod Stewart song. I bet you hear that a lot. Glad to hear no side effects for you. I appreciate your prayers. I'll say some for you too.

    Thanks again, Maggie.

  • I'm glad you got a good nights sleep. I agree, migraines bite the big one. I've always equated the pain as someone sticking a needle in my eye and well you know the rest.

    Take care and I hope you get them under control.

  • I'm sorry to hear about the new TN problem. Zach, it looks like your problems are all in your head. LOL

    Anyway, I just wanted to say that I had a migraine only once in my life, almost 30 years ago, and I still remember how it felt and doubt I'll ever forget. It was the worst pain I've ever had and I feel for you having them be a constant problem. But I'm glad they seem to be under control.

    Take care Tammy - you're a great person and I'm sending you a big, gentle hug. And I'm sending a hug to Zach, too.

  • LOL!

    Yes Cath... you got that right.

    Thank you for the kind words and hugs. Means a lot to us.

    Message from Zach:

    Yep... LOL! I know mom's gonna tease me about this too. Fact is, I can always come back at her with having a screw loose. Did you see her spine pictures? She has a bunch of screws in there now. Wish she didn't have those. She has a good sense of humor and I do too. Thanks Cath. Hope you never get a migraine again.

    Hugs back to you,

    Tammy and Zach

  • Thanks, man.

    I think this medication will do the trick.

    Needle is a good description too. I've actually felt like taking my eyeball out. Can't do that or mom would be P.O.'d at me.


  • I've told my husband that now I have eight more chances of having a screw loose. LOL

    I'm glad to see that you still have your sense of humor just like your mom. Laughter is definitely the best medicine.

    Oh, and nice pix of the fish. If my hubby were here, he'd be mighty jealous!

  • Hi Tammy and Zach

    I just saw this whole topic. Back to school has been crazy at my house.

    I started on Neurontin a week or so before you did and have been increasing slowly. I haven't had any side effect. I was wondering how you are doing Zach.

    I'm using it because they feel that my whiplash set off a nerve spasming (for lack of a better word) throughout my ear, sinuses and neck.

    Let us all know how things are going.

  • dilaurodilauro ConnecticutPosts: 9,859
    hear that news... Its not that you dont have enough to worry about yourself, now add this stressor. And as a parent, I can only imagine that your own pain, agony, problems, etc are going to be put way back on a low end while you take care of your son.
    I dont know how this is corrected, I do no that nerve medications are in order and I do know from what I have read the patient has some very painful episodes.
    I know that both you and Mike me would do anything to take that pain away from your son.
    I do no often talk about prays and supreme existence, I believe, but just keep it to myself.
    But now is the time for my to pray and pray and wish that all the pain and suffering that your son has to go through right now is short and that there is no further long term pain....
    Tammy, my heart reaches out to you... I know who you are and what you are...Please keep strong, and for all the times you kept strong for yourself, keep 10 times stronger for your son. He needs you now.
    Your friend,
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • when i posted earlier i didnt know you were an avid fisherman. so now we have two things in common fishing and headaches. in fishing the numbers are important. number of inches and number of lbs...also number of fishing friends you make. with headaches its the number ten on the pain scale that gets your attention. i just hope you can get over the high numbers on the pain scale and save the big nos for the big fish. hang in there and hopefully the good docs will end this pain.....pete
  • Tammy

    I just thought of a side effect that my doctor warned about. Weight gain is very common. He even said he would change the meds if this happened. Apparently it is very common and can be very severe.

    I find that I think about food more. But it isn't really a craving. If I wasn't aware I would probably eat more.

    Good Luck
  • My experience has been that the Neurontin creates a craving for certain types of food. A couple years ago we dropped my daily dose by 1/3. After about 2 months I went back up to the higher dose. I wanted to eat every chocolate cupcake, pie, cookies ... it took a lot of self control.

    As long as I am cognizant of it, I can keep it from ruling me and causing me to gain weight.

  • Tammy, :D my thoughts are with you and your terrific son, Zach! :X i wish i had more to offer.. hugsss and love, >:D< Jenny :)
  • I'm sorry your son is having migraines and cheek pain. I had to get x-rays and a ct to make sure everything is fine. I've had sinus problems and had to have surgery for that. I no longer get migraines. Many food triggers migraines like seasoned potato chips and MSG in food and many vegetable cocktails except v8. Anyway maybe I went off topic because of migraines and triggers but know they can be cause by barometric pressure and hormones also. I know cheek pain is painful and hope the meds work for your son. Zach has a sense of humor and sounds very intelligent for his age. Hang in there Zach. I know they try accupuncture and biofeedback techniques for trigeminal neuralgia also. Take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • :H Sorry to hear about your son. My doc put me on Neurontin for fibromyalgia and meralgia paresthetica. This medication affected my memory so you need to watch for side effects. I got into an arguement with my children who wanted to stop at a neighborhood store and get a coke, I told them we had already passed the store, we hadn't. I didn't know where I was. I told my Dr and he put me on Lyrica with much better results without memory problems. Be caregul with meds. Good luck!
  • dilaurodilauro ConnecticutPosts: 9,859
    But no matter what, he is still your baby and you dont want to see any harm in his way.
    For about 18 months, my daugther had intense headaches.
    This was when she was a freshman in high school. They
    gave her all sorts of tests and medications. This was at a Hospital for Headaches in Greenwhich, CT. It was so difficult to watch because of all the meds,so could hardly function.. But they releasea her and had her going back to school with all those medications.
    I was tottaly amazed at what my daughter had to go through. She was released from the Hospital, still not knowing what was the root cause. They loaded her up on medications and let her deal with it.
    How she went to school every day with that still amazs me.
    Tammy, life has ways in righting any wrongs it did.I know.... I am praying for the best for your son and you
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • My daughter Ali was 12 when she was diagnosed with Trigeminal Neuralgia. She had it on the right side also. We tried the medication and for her it worked for a while and then it stopped working. She was taking 900mg of Neurotin (Gabapentin) and 900mg of Trileptal each day. She was not able to function with this dose of meds and they started to not work after about a month. We decided to find a doctor to help us and we went to Johns Hopkins Hospital and she had a surgery called Microvascular Decompression they removed the artery off of her nerve and put a teflon padding to keep them apart. She has been pain free since the surgery and she is off all medicaiton.

    Anyway I have said to much. I am just really sorry that your son is going through this and I wanted to reach out to you. If you would like to talk or have any questions about TN and children I would love to help. I hate to put my email out like this but I am not sure of any other way so kimberlyarmour@comcast.net

    I will be thinking about you and your son.

  • Just wanted to say hi, how have you been Pete, hang in their Pete.
  • Dear Ron,

    Thank you for your heartfelt message. I appreciate your friendship so much and my family does too. You have helped me through many rough times throughout my recovery and I thank you for your continual support and friendship. Big hugs to you.

    I am a little bit tired this morning, so please forgive me if my message doesn't flow very well. I needed to type to you and everyone else, as I like to keep you up-to-date with how things are going. These past five days have been a whirlwind in my mind. I'm hoping the Neurologist will help Zach, whether it's with the medications or any kind of surgery he may need in the future. This Neurologist has an outstanding reputation, which eases our mind.

    Zach had a really bad flare-up early Monday morning, around 2:00am. He was doing pretty good throughout the weekend, just a few episodes with the cheek. Zach had spent Sunday doing a lot of fun stuff with his step-brother Michael and he was feeling really good. He took his first morning dose of the Neurontin and felt no side effects other than a little drowsiness. Zach took his night-time dose around 8:30 and fell asleep around 9:30. I was awake at 1:45am watching TV and all of a sudden I got that "gut" feeling that something wasn't right. I went and knocked on Zach's door and he was holding his cheek in agony. I told him to go ahead and take another Neurontin and one of his Vicodin pills (the Vicodin was given to him by the hospital and his Neurontin dose is 2 pills, twice a day). He and I went out to the family room and stayed out there until 4:00am. It took this episode a long time to get under control and it's the worst one he has had, so far. I tried rubbing his neck and his arms, but there was nothing we could do but just ride it out and pray that the medication kicked in soon. I laid on the couch and he was curled up with my body pillow and a blanket on one of the recliners. The only thing that brought him a little bit of relief during his flare-up, was holding ice cold water inside his mouth. (This would torture me, as I have really sensitive teeth... lol). Finally, the meds kicked in and the agony was gone. He went back to his room to go back to bed. Before he fell asleep, he came out to the family room around 4:30am to let me know that 95% of his pain was gone and gave me a hug and kiss. After he told me the good news, I conked out.

    During that last flare-up, I kept wondering what could have triggered the episode. I finally determined that he must have been stressing about the days he missed at school and making up tests, etc. (Unfortunately, Zach gets this type of thinking stress from moi. He is an over-achiever and sets high standards for himself... sometimes too high of standards. He is also... not the most patient person. We differ in that area, as I've always been known for being very patient). When Zach woke up, I asked him if he was stressing about anything before he fell asleep and he confirmed yes... school and the Trigeminal Neuralgia diagnosis. I had him sit down with me and go over some information I found online about Trigeminal Neuralgia and what "C" said about things that can trigger flare-ups. He agreed that he tends to stress about things more than he should, but that's the way "his brain works". He told me he has a hard time not stressing over certain things and I completely understood where he was coming from. He also told me he's having a hard time being diagnosed with a chronic condition and is mad that he is going to have to take pills the rest of his life. He knows he has to, but he flat out said it "sucks". He asked me questions like... "What if this interferes with sports"... "Is this going to make me miss a ton of school"... "What if this medication doesn't work"... etc. All of his questions were very valid ones and we talked for a long time. I told him that he and I were even more alike right now, as I have a chronic pain condition too. He then told me that I have more patience than he does and he's finding it really hard to be patient... particularly when he is in excrutiating pain. I told him we will work together and I will help him with coping techniques... and anything else he has questions or struggles with. I told him we are in this together, as a loving family and we have a lot of support from other chronic pain sufferers. I made certain he knows that he is not alone in his suffering. Like me, he said we are really lucky to have found Spine-Health and wants me to thank everyone for their prayers.

    After our talk, I thought of another avenue of help. I suggested having him talk with our family counselor, who is a Psychiatrist. OMG... you would have thought a bomb landed in the room. Zach has no problems talking to people or to a counselor (I had him in counseling when I divorced Zach and Nikki's father)... but the first thing he thought of was "more PILLS"! I was straight-out honest with him and told him that was highly possible in the future and showed him again, the treatments for Trigeminal Neuralgia. In addition to the nerve medication, sometimes anti-depressants are prescribed to help. I didn't push the issue with Zach, I just tossed it out for him to think about. Shortly after our talk, he said, "Yeah mom... I'll give it a try. Do you think she will see me?"

    I called our family counselor and the receptionist had a cancellation come in for a 2:00pm appointment on Monday. (When I first called, the earliest appointment Zach could be seen was for November 2nd). Zach went in to talk with the doctor on his own for a while... and then the doctor called Mike and me in, to discuss an additional treatment plan she and the Neurologist could try. (She called Zach's Neurologist with Zach in the room). Lamictal is what was prescribed. Zach may not need this at all. Time will tell if he does or not. The counselor is going to see Zach every three weeks and Zach is glad he went. He hasn't been for counseling for quite some time, but I'm glad he is open to it. I told him to tell the counselor anything he feels he needs to talk about, particularly any kind of stressors he has. I explained she is here to help you and what you talk about is between you and this doctor. As close as we are as a family, there may be things he isn't comfortable sharing with us. And, hey... I understand that. It's important that Zach gets any stressors out of his system, in an attempt to combat the flare-ups. (It was kind of funny, as our counselor's daughter goes to Zach's school. She is a Freshman. Zach didn't recognize her picture and our counselor said, "If you see or hear a little drama queen at your school, it's probably her". Zach replied back with, "I don't think there is ANY girl out there that is more drama than my sister!").

    Zach wanted to go to school yesterday, so I gave him the go-ahead. He survived the whole day, but came home exhausted. He also had a hard time focusing in his Spanish class. I told him it might be best for him to just chill out at home the remainder of the week, so we can give these meds some time to adjust in his system. He can do his homework from home and we'll take it up to the school. Any tests... we can arrange to take after school. He wasn't too thrilled with my idea, so we'll see how it goes. He is home today.

    Thank you Ron, again, for your thoughts and your prayers. We really appreciate your friendship and we are always here for you, too.

    Message from Zach:

    Hi Ron. It is nice to meet you. I hope my pain subsides and is not long term... just as you said. Mom has told me how long you have been suffering, so I know mine is nowhere near yours. I thank you very much for your kindness and prayers. I really appreciate them and will say prayers for you.

    ***Zach wants to reply to everyone, but he is going back to bed. I need to do the same. We will be back on this afternoon to say hello and address each thoughtful message. Thank you all for your well wishes and prayers!***

    Much love,

    Tammy and Zach :)
  • That is fantastic that the MD worked for your daughter. I think if it is done at an early age it has a greater success rate. I have a friend who is in her early 50's and the doc went to do a MD and found there was too much scar tissue. Anyway, long sad story involved in that.


    I found Lamictal to work well. It is one of the few anti-seizure meds that I took that I didn't feel comfortable with. It worked well and gave me a break from another med I was using, however I always had that nagging feeling that I needed to be off of it as soon as I could. What's nice, is Lamictal is more effective than Neurontin at lower doses. One thing about long term use of these types of meds, is at some point they tend to lose their therapeutic abilities. By taking a "holiday" from the specific med, it allows it to become effective once again later down the road.

    Tell Zach that there no reason to think he won't be able to do anything he wants to in life. There are many professional athletes and professional business people who are suffering the same thing and no one is the wiser.

    With determination anything can be accomplished!

Sign In or Register to comment.