Any other moms with big families on this site? I’m trying to hang in there, but I’m 38 years old, I have 4 kids-ages 14, nearly 13, 11, & drum roll please…only 2! I’m visually impaired, so I’m a stay at home mom. Taking care of a toddler means I cannot take strong meds during the day. My symptoms are progressing quickly! I’ve had TN for nearly 6 years, but, I had a year or so remission. For the past year, I’ve had more high pain days than not. Since Easter, I’ve had only 13 low-no pain days (spread out, not together). I’m waiting for a brain MRI, & an appt. with a neurosurgeon. If any of y’all say prayers, pray for me! I’m about to lose it! So tired of hurting! I know y’all are too!
Oh my word, you have my upmost sympathy and prayers! I hope there is a surgical solution for you. Sounds like it's time to do it and quickly, too. I will be thinking of you. Please post what happens with your MRI and appointment. Prayers and good karma are headed your way!
I'm right there with you honey! I wish I could help but I have no advice. I'm a stay-at home, homeschooling mother of 5! Ages 12, 8, 4, 3, and 2! My 12 yr old has Aspergers, 8 has ADHD, the younger 3 are adopted and were all exposed in utero to drugs and alcohol, pretty sure if I had the 4 yr old tested, she'd have FASD. Right now my pain is in remission or controlled with meds but the meds are about to drive me insane. I got off tegretol because I was a complete drink with it but the oxcarbazepine is really messing with my mind, to the point I'm keeping my checking acct in the red all the time because I can't keep it straight! I offer you hugs and prayers! Hopefully they will figure out something soon! My doctors think mine is a cross between TN and cluster headaches, so nothing can be done!
I know how it goes with kids, older ones and toddlers. My youngest was around two when I was diagnosised with TN. It was rough at times as I was working full time and going to school as well. She was really into touching my face at the time, she still is now at five years old but now she is very gentle. I don’t think there has been a time since having TN that I have not struggled with exhastution. Weather it’s from medications, exhaustion from pain, or little to no sleep. Thankfully my husband and both or our kiddos are understanding of my need of taking naps. My family has also had to readjust to something as well; such as my eldest (who is 14 years old) may need to keep an eye on her little sister for me to rest, nap, or worse I’m in pain, learning to communicate without me having to talk or barely talk, to my husband making something for dinner, to everyone pitching in with house work. This year Im so thankful that my youngest started kindergarten. She is hard for me to keep up with and she needs some refuge away from mom being sick.
Any how; You might want to try a topical cream such as one with lidocaine in it or magic mouthwash to see if that will help bring down your pain levels when your alone with your youngest. I wish I could offer you some better tip but just know your not alone with having young chillin’s at home. Feel free to message me if you’d like to talk on this. I hope you are having a good day that is pain free today.
Hi ... I'm 37, I have a 4yo and a 6yo and my youngest was 2 when I first got TN. So I completely sympathise. Even now I struggle, at the moment I am doped up with painkillers because my husband is home right now but later on he will go to work. It is horrible to have to try not to take painkillers because you need to care for children, and it's catch 22 because my kids have seen me cry from the pain. I also feel that they miss out on stuff because of my TN ... sometimes I fall asleep because I'm so tired from the pain or meds (is that safe? Luckily I have kids who are brilliant at amusing themselves and not getting into mischief), sometimes I have to get them breakfast and let them watch TV while I go back to bed for a while if the pain is bad. My daughter likes me to walk her to school but I can't in the winter. My 4yo goes to preschool 3 days a week so often I'll go back to bed to catch up on sleep. He starts school next month but then I'll have both home full time during the school holidays (they get holidays December and January). I also work part time on top of all that! I hope you are able to get on top of your pain soon to make it that bit easier (noisy toddlers trigger too!).
It’s 2 o’clock in the morning…everyone in my house, in clouding my 7 month old ab puppy are snoozing away & here I st…in horrible pain. Thank you, poisonivy! You’ve helped me more than you could ever know! I’m not alone! I do lie on the couch with ‘little one’ tucked in the crook of my arm, so I can feel if he gets up from watching cartoons. Where in the world would I be without Netflix?
Tomorrow I go to Duke pain clinic in Durham for. ANOTHRR pain assessment! I have some sort of procedure scheduled for Tuesday! An MRI scheduled for Saturday, & a 13 th birthday/camp out scheduled for this weekend too. Sound insane? This little momma just has to keep putting one foot I front of the other…for my kids…
Oh yeah, poisonivy-my 2 year old hears me moan, & in his quiet, sympethetic voice, he asks, “Mommy? You hurting? I fix it.” Then he rubs the too of my scar (from open heart surgery) because it always comforts him haha! He’s trying to help. He’s such a sweetly!