Chiari Online Support Group

Sleep issues?

Anyone have change in sleep after surgery? Better or worse?

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I have not had surgery for my chiari. I dread night time I feel like I can never sleep some has to do with pain and some has to do with fear because I know if I sleep to long in one position when I wake up it is going to be more painful and very symptomatic so I sleep about 45 min then wake up for an hour or 2. I really like the quiet when everyone else is asleep I just wish I could be up doing something but I feel to awful to get up.

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Other than obviously the pain factor and the terrible vision issues, I would rank the insomnia next in line as far as worst symptoms for my daughter. She often goes for a week or more with only 1-2 hours of sleep a night. Not sleeping is only compounding her symptoms— if your body can’t rest, it can’t heal. I think that goes double for the brain. I finally got her pediatrician to prescribe something to help her sleep… but it took months of insomnia and me literally breaking down in his office for that. After all that, it worked for approximately 3-4 average hours of sleep per night and after about 3 weeks of using it and melatonin, it barely helped at all. It would help her fall asleep but she would be right back up—for the rest of the night. Our last visit, he doubled it. I can already tell that it is not working as well again. I know that the lack of sleep gets to me (if she’s not sleeping, I’m not sleeping) physically, mentally and emotionally so the effects have to multiplied for the Chiari brain.

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I have tried ambien and everything that is supposed to help with sleep it all has the same effect it will put me to sleep but not keep me asleep . After so long with not much sleep my body will just shut down and I will sleep all day at least once a month. I have found audio books help calm my mind so even if I am not sleeping at least I am resting and I have something to focus on instead of my mind running wild. watching TV and reading a book are hard to do The TV is to bright and the pictures move to fast and reading is hard to focus on the words without them getting blurry. I could listen to someone read the dictionary and it helps me.

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I’ve found exactly the same thing with my daughter. She listens to podcasts, meditations or audio books to rest. Strange how even prescribed medications for sleep don’t work well either. But honestly I’m finding that no medications work properly for her.

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i am ready to give up on medication. I watched Doctor Reacts to John Oliver | Last Week Tonight: Bias in Medicine it was eye opening. The John Oliver one is good but there is some cursing just so you know. The Dr.Mike one is very good. It prompted me to do my own research and all I can say is wow.

I’m not sure I’ve ever heard of that…is it on YouTube? Or tv?

It’s on YouTube

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I’ll check that out, thank you.

I hope you enjoy it. It really helped me to understand why doctors brush us off and why a lot of medication doesn’t work for women.

I did find it interesting but definitely not shocking at this point…So many brush offs that I’ve stopped counting. Sad though because my daughter has already experienced such bias at only 11 yo. She is quick to say “Let’s go home mom, they aren’t going to help me here.” Frustrating :confused:

i am sorry daughter has learned so much so young. My daughter (who is 27 now) learned it in 7th grade. She was prone to getting strep throat she must have had it 6 times that year she started getting worse so I kept taking her to doctors and kept being told its probably just strep again. She had rashes and her head had lumps by the time I found a doctor to listen her rashes were big open sores and the lumps were huge turned out she had strep but also a flesh eating strep and mono all at the same time.It was so hard seeing her face and listening to her tell me Mommy I am not making things up why don’t they believe me

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Wow! That’s terrible! I am so sorry to hear that she knows the struggle too! Even 7th grade is still a baby. I pray that she is well and living a joyful life these days :purple_heart: Thank you for sharing your experience, as always it is so encouraging to know that we are not alone! God bless you and your family.