How do you guys handle the lack of sleep? Laying down seems to trigger me and I can't seem to fall asleep sitting up. I need to be on at least a slight angle, but anything less than sitting up straight and the pain comes on hard. I slept 2 hours last night (or in the morning. Wasn't until about 8am). I can't sleep during the day because I have a toddler. I am on a amitriptyline to help me sleep. doesn't work. I'm on percocet on top of that only if I need it...doesn't work. 1 night is one thing, 2, 3, 4 nights in a row is hard and I don't know what to do. I become a zombie. I do the bare minimum that my child needs. I feel like such a crappy mom for not being able to do stuff with her and teach her and take her out like we normally do. I couldn't even make dinner tonight and I ALWAYS make a good meal. We had to order pizza. We don't eat out, we don't do fast food or delivery. I always make food. I went from being a sane version of a Stepford wife/mom to feeling like I'm neglecting her. She has clean diapers, she has food, her teeth are brushed, hair combed, she's safe but that's the bare minimum. I'm not a bare minimum mom. I mean she spends the whole evening playing with my husband so that's something but I just can't do it and I don't know how to deal with this.
I so feel for you ,I have always thought how hard it must be to deal with this when you have young children .
I was "lucky" to get TN after my children had left home ,but even then I felt bad when I couldn't do things with my adored grandson ,but again at least I had the luxury of handing him back .
I also have been given a small dose of amytripline to help with sleep ,I find I have to take it about eight or I am just zonked out in the morning ,still awake until about 2am though .
my doctor asked if it was helping me sleep ,I said I need to get rid of the pain to be able to sleep .
Sorry i havn't been much help .I am sure your daughter feels loved and happy .
I truly hope that you will be able to do the things you long to do with her soon ,meanwhile enjoy quite cuddly times with her .
you are not a crappy mum oops mom if you were you just would not be bothered about it
sending love x
Hi, dear…Bless your mommy’s heart that is so tender towards your baby girl. My youngest son was almost two and my daughter three. My oldest was nine. I can share more, if you’d like to msg me. We can do so privately. One thing I’d like to say is that it took 50mgs p/night of amitryptelene for me to get my body sleeping well again. Now it’s 25 mgs. Talk to your doc because I’m ten years down the line in this TN management thing. Also, sleepytime tea made with two tea bags p/eight oz of water two hours before bed does wonders for a better nights’ sleep.
Your baby girl loves her mommy being WITH her. This is a huge gift that not all children experience. Remember when you were little and one of your favorite people in the world was your mom? For me it was my mom, grandma, aunt and then my foster mom. My story is complicated, but ome thing I kept in mind during my painful time was that between my hubby and I we would fill up our kids’ little emotiomal tanks each day. We had just moved 1,000 miles away from our parents and my brothers so we knew of no family to help during the adjustment period for TN. Often, if I could not talk with the kids due to a trigger coming on, we would watch Veggie Tales together and crack up! The kids learned to kiss my “owee” and were taught that under my skin, it was very painful. We would either use the stories we had or get kids books on tape and the tape would read the story as we would go through the book. We’d listen to uplifting music while we colored together. Our library would send our books and tapes in the mail which helped me to nOt agrivate a trigger.
I’m off to a doctor’s appt, but can talk more another time, if you like. Remember, you ARE a good mom if you’re loving and training your child to do well and her best in this life. No, we cannot do everything we’d like to with them, but we can do some very important things with them. I wish I lived close to you so I could hug you and applaud you
Face to face!
Sincerely,
Lynda
meant quiet cuddly time not quite
I don't have the same issues with sleeping, but I can relate to feeling like a bad mom, just trying to get by and manage the pain, and the meds and side effects etc. I have 4 kids, age 12, 10, 7 and 5 - and I just hope we can all get through this somehow. My husband is wonderful with picking up the slack when I can't do much of anything, but I know he is also getting exhausted and worn thin. Anyway - I don't have much advice, just wanted you to know you're not alone. We're all just doing the best we can. Hang in there!
Thanks guys. Still no sleep last night. My mom came over today before my daughter even woke up so I cold go to the ER and try to get something stronger than the percocet I have. 6 hours later I got a shot of morphine that didn't affect me one bit (no pain relief and no side effects). I missed a whole day with my child for nothing. :'(
I was having problems sleeping due to the pain but Tegretol has wiped that one out. I am sooooo exhausted I could now sleep at any time of the day or night.
Do you have a recliner you could sleep in?
The neurologist and my pharmacist both told me that Tegretol is the first line of treatment for trigeminal neuralgia and neuropathic pain sometimes doesn't respond to opiods
.And you sound like an awesome mom. Remember, it won't always be like this.
I don't have a recliner and can't afford one sadly. I'd love one. So I have to prop myself on the couch, but if I'm propped enough for no pain then I can't sleep and if I'm comfy for sleep then TN flairs up. Catch 22.
They want me on tegretol but my husband and I have been trying for another baby and I already ovulated this month so in case I'm pregnant the gabapentin is safer. If I'm not pregnant I guess we're taking a few cycles off to get my TN under control before we face pregnancy. I won't put it off more than 2 months though. If I can't in 2 months then I'll go off all meds and deal with the full blown pain. We've been trying for so long I am NOT giving up now.
I definitely empathize with you and understand about Tegretol. I put off taking it because I am so scared of it's effects. Are you taking Gabapentin now?
And I hope you get pregnant real quick. I know many people who have been through the struggles of trying.
Ya I'm on gabapenetin now. Have been for about 3 weeks.
Started out at 100mg twice a day, then they upped it to 100mg 3 times a day, then 200 etc now I'm at 400mg 3 times a day. I'm still under the limit I believe. So hopefully one more increase will do it. Or maybe I'll just randomly go into remission for a couple years...wishful thinking.
I was so sleep deprived from pain at the beginning also. First, you have to get the pain under control. Have you tried moist heat or some kind of heat on the site of the pain? Then, you can address the sleep problem. Your body chemicals get so out of wack with the meds and the pain!! My doctor put me on Doxepin and Xanax for sleep. The Doxepin is totally non addictive but really helps with sleep. It is mainly prescribed for sleep disorders. The Xanax can help address the pain and put you to sleep. I wake at 6:00 AM every morning and need a couple of cups of coffee to get going - but I love coffee so it is okay with me. A good night's sleep will help diminish the pain. Before I started on these meds, the pain was 24 hours - all day. Once I started sleeping, I would have a good thirty minutes in the morning with no pain at all and almost felt "normal". Please call your doctor right away and tell them you need to sleep!!!!
Heat helps but only temporarily. I see my neurologist on Monday for the 1st time. This will definitely be something I bring up to him.
Did you call nurse and ask for lidocaine patches or cream yet?
I did it over the phone - could NOT wait until my next appt! I think creme is cheaper
No KC. I'm writing all of this down and talking to my neurologist on Monday. I slept great last night (apparently even sleep walked into the kitchen, got a hot cloth for my face pain and went back to sleep on the couch. Hubby said I did this when he was leaving for work. He felt bad for waking me up. I don't remember any of it lol)
But ya, I'm okay right now. There's a lot of things people have been mentioning to me so I want to talk to him about all of them and see what we bothj feel is the best course of action. The less meds I take the better (for me. I just hate being on any unnatural medication). I'm trying acupuncture tomorrow at my chiro appointment. Someone told me that it got rid of her pain for 3 days each time it was done. Worth a shot.
Hi, I really symapthise with you on this one. My kids are 4 and 2 and the 2 year old gets up in the night still. My pain was waking me through the night as well as the 2 year old so I was on autopilot and like a zombie during the day (plus the oxycodone I am on didn't help!).
I've only been on Tegretol for 3 days so far and after the 2nd night no more pain waking me up! It may not work the same for you but I have found it brilliant for dampening them down to a niggle that you can sleep through. So now I just have the 2yo to deal with :P
I hope you get this sorted out soon, it's so depressing not having any sleep and you feel like your children suffer too from having a zombie mummy :(
Hi nwaring,
I'm a man, but I'll just chime-in on this topic in hopes that you can pull it all together and gain some insight related to your pain management... My first "face-Taser" attack brought me out of a sound sleep at 3 am just before Christmas in December 2008. I'd never felt that kind of intense, shock-like pain EVER in my life--I jumped out of bed and popped to a military "Attention" stance while drooling at the mouth and copiously tearing up from both eyes.
With all that drama, and since that day, I've never had a similar pain rampage like that while being horizontal in bed at night. For me, and with what I know today, the only time I'm truly pain free is when I'm horizontal in bed.