How many have sleep and or memory problems?

[mikeysmom1995]

Hello everyone,
It's been awhile since I posted, been kinda crazy here. My DS is having so many sleep issues that I feel like our lives have been turned upside down. He does not fall asleep until the wee hours of  the morning between 2 and 4 am, and then I have been getting him up after 8 hours but sometimes even then he is still dragging butt. Is this common? The nurse said it sounds more like an adolescent issue, but we have tried making him go to bed extremely early and he still wakes in the night and can't sleep.
Also, his memory seems to be getting bad. We can talk about something and he is fully engaged in the conversation, then turn around in an hour and ask me a question about something that we had already discussed.
Does this happen to anyone?
I don't know but it seems as though this is also altering his personality as well, and I am so scared.
He just seems so removed from everything which is not like him at all.
I feel like I am going  to crack under all of this and I am so scared, I feel like I am losing my boy, and I think that he is scared as well, but does not like to talk about it.
It is 2 more weeks until we see Dr. Frim, and I am so praying that he can give us some clarity with all of this.
DSs headaches are better, but he still has them especially when in a stressful situation.
Full spine MRIs came back very good with no evidence of syrinx or tethered cord, Thank God.
If anyone can shed some light on this I would so much appreciate it.
Hope today finds all of you feeling well, and Thanks
Barb:)

[Penguins57]

As an adolescent with Chiari, I can relate, because before my surgey, I wouldn't fall asleep till like 3am, and it sucked on school days cause I would have to get up at 6am. And I would fall asleep for lik probably an hour all together during the school day. And I'd be tired all day, but then I would come home and get ready for bed and it was like I couldn't fall asleep no matter how tired I was. Somethings I found helpful were slow music, I listened to R&B and country. (Weird Combo, I know C= ) I also made my room really cold at night, and just snuggled up into my bed and didn't do anything till I fell asleep. Unfortunately, it didn't work out very well. Plus, in the middle of the night, I would wake up tossing and turning, because I would have random twitches due to the Chiari, so that screwed up my sleep even more. Even though I can't help you out to much on how to help him, just know that it is normal.

I also, had PLENTY of memory problems. My mom would get so frustrated about it, because she would ask something like "What did so-and-so say?" And I would just be like "I forget..." And it wasn't like I just didn't want to talk about it, I seriously forgot. I did terribly in school because of this, especially in Math and Spanish. And I would ask someone a question and a couple seconds later I would ask again...

So yes, this stuff is normal. Whether he needs the surgery or not, is up to your family. If he really is having this hard of a time with sleeping and memorization, surgery might be a good possibilty to try. I had surgery about a month ago, and I am so happy I had it done. My memorization is soo much better already, and besides staying up late and texting people C= I fall asleep very easily. Already, and it's only one month. It's hard now, but it will get easier.
~Prayers for your family~
Love, Allison

[EdwardPB]

I asked if this would effect my memory, but I forgot what he said....

[mishmack]

Hi I most certainly have the same problems but I can get to sleep but I can't stay alseep and I'm up and down all night long.  My memory is scary,  I do things and then have zero memory of what I have done.  I hope this helps,  keep your chin up lovexxxx

[*Stormy*]

HI Barb

The sleep problems could be a little of both... My DS does go through issues like that where he will not got to sleep until 1 or 2am and he is in tears from the frustration of it, he will sleep into 11am, any chance he gets!! I actually read a study where they changed highschool start times to 10am in the morning and the failure rate dropped from 45% to 17%. So, I think some of it could be adolescence wrapped up with the fact that Chiari also causes some sleep issues as well. Ever since I can remember I have had sleeping problems..sometimes I just can't go to sleep at night, other times I do fall asleep and then wake up 1 hr later and can't go back to sleep. Sometimes I just wake up every hour!!
As for the memory...I think that is my weakness too...I can never remember if I just thought a question or already asked it. So it results in me either re-asking and getting the "look" from my husband or I think I asked and didn't and then he wonders why I expect him to do something that I thought I asked him to but didn't (if that makes any sense at all). Sometimes I spend a good 5 minutes pondering whether I took my meds or just thought about taking them!! Not a good situation to be in b/c you def don't want to double up on thyroid meds!!
For the personality changes...I wonder if it is just the frustration and pain he is going through. My family knows when I am having a rough time and they all get far, far away. I noticed that I would get cranky and out of character even way before I knew what was going on..and I would wonder why I would feel that way? It is a really hard ride sometimes and I imagine it even takes more of a toll on a child.

I can imagine that you are scared, honestly, I would be too. I wish that there was something I could do or say to help you... I really hope that this DR visit results in some clarification and hopefully an idea of how to proceed to help your DS. Like someone mentioned, make sure you tell the DR everything, about the personality changes, the sleep problems and the memory. I am glad that at least the headaches are better!! Is he on any meds for them? That could be another cause of these symptoms especially if they use an antidepressant drug which they sometimes prescribe for migraines.

Take care of yourself and I'm praying for your DS, you and your family xx

Carolyn

So it sounds like it is Chiari messing things up for you DS...

[shanmomof3]

barb, he may also be in a "good" cycle since his symptoms are better right now. Our symptoms can and do cycle. Just make sure you have a list of all the symptoms he has had when you see dr. Frimm. Even if he's not having that symptom right now. I have taken Lunesta and Rozerm for sleep but now its so bad i have to take one of those and a muscle relaxer to get sleep. The only problem is i go so far under its hard to wake up. Hopefully that will change be after my surgery. Blessings ~ Shannon

[cyberpyxi]

I know how frustrating this can be for you both. You are in my thoughts

[mikeysmom1995]

Thank you, and I agree that not going into deep sleep could be affecting his memory. We tried the melatonin and did not have any luck with it, but the nature sound machine may help. Thanks again for your help
Barb :)

[cyberpyxi]

I know that lack of good REM sleep causes memory issues... on top of everything else, this could be exasperating his memory.

My DH has problems with sleeping, as well. We started giving her melatonin at about 9 at night, and it helps her fall asleep. She doesn't have issues staying asleep once she's out... but she has to really be out. If she's just getting to sleep and gets woken up, she's up for hours. Bed Bath & Beyond has one of those nature sounds machines for about $15... which helps drown out outside noises to allow her to fall asleep better.

Not sure this would work for your DS, but perhaps worth a try.

[mikeysmom1995]

Thank you all for your quick response.So the sleep issues can be chiari related. The Doc gave him some Tenazipam for sleeping but he won't take it as he is afraid of becoming dependent on it. He is still home being homeschooled so we can start at any time of the day.
All of his tests came back okay, no blockage, no syrinx or tethered cord. So will the Doc want to do surgery because of his sleep and memory issues? Most of his physical symptoms seem to have subsided for now with the exception of  HA's. and those have been better as well. I guess we will just have to wait and see.
I feel better having all of you to talk with, even though I don't get on as much as I use to, I think about all of you daily. Thanks so much and many blessings to you all.
Barb :)

[jorlex137]

Sounds familiar!  My memory scares me, I'm very cloudy!

Sleep has been a battle!  I took Tegratol for a month and it cured my sleep issues and some nerve pain....however it can make memory worse, which was bad for me at work1

[selmaS]

HI Barb...most definitely...like most of the symptoms this cycles too.....right after surgery I slept like a log....slowly I went back to lying there until 4 or 5 AM......then I fall asleep and could sleep all day......I also know if I have a lot on my mind that also keeps me awake...talk to ur DS to see if he feels he has a  lot of things to do......has he gone back to school/school work?

..and memory has gotten worse...but, I am older than ur DS...and I am sure age does play a part in some of my issues.....after Easter...DH made some leftovers...I said when is the stuffing from...he said Easter, I put some on ur plate...I still do not remember having it or even seeing it....lol....

I pray the dr has some answers for u and ur DS
Keep us posted Barb...in the meantime hang in there : )...remember we r here and willing to listen.

"selma"


I am so happy to hear ur DS does not have a syrinx and it doesn't show TC.....

[shanmomof3]

Hey Barb! Yes, this sounds VERY familiar! It doesn't matter what time i go to sleep or for how long, i will still be tired when i get up! I hardly ever go to sleep before 1 or 2 am which is hard because i have to be up by 530am! As for forgetting things lol mine is more like within 5 or 10 min lol My DH said i asked him the same question every morning for a whole week but i didnt remember it. Blessings ~ Shannon