My 16 year old has been experiencing a lot of nausea and insomnia for past week. I called her Neurosurgeon and his nurse practitioner told me this is not related to Chiari and that I should contact her primary doctor. Does anyone else or their children have this happening to them? I am trying to get her help but running into roadblocks. Waiting for call back now from PCP.
Thank you, Carrie
Did you find out any answers?
no not yet. still waiting for call back. :(
gabby jazzypants said:
Did you find out any answers?
Insomnia and naseau can most certainly be chiari symptoms i suffer from insomnia myself with it. only geting 3-4 hours of sleep per night typically
Thank you. I was confused because I thought those were symptoms but her nurse practitioner keeps telling me he has never heard of those symptoms as being chiari ones.
I have had insomnia throughout my experience living with chiari and pineal cyst. It is very difficult for me to get sleepy. Once I am good and asleep, I usually am able to stay asleep, unless I’m awakened in early morning hours, which for some reason for me, seems to be a particularly painful time of the day and therefore harder to get back to sleep. It’s challenging for me to discern if it is because the headache and throbbing are worse when laying down, the tinnitus is worse when laying down or just seems that way when I try to go to sleep. I have done a sleep study and was told that insomnia is by and large genetically pre-determined and while I can take medications and maintain healthy sleep habits to help, I will always be battling against my DNA. This, I know, isn’t very encouraging, however I would rather know what appears to be the scientific facts than speculate about why I can’t sleep. It is probably also worth noting, that I have found research to suggest that growths on the Pineal gland might also disrupt sleep patterns in some people. I have experimented with OTC meds such as melatonin, but I have found that they triggered my headaches. good luck and I sympathize with your difficult and frustration situation.
Wow! I am so sorry you are going through so much! I have tried Melatonin however made her very moody and wired.. different effect than I expected. Her doctor is still saying insomnia and nausea is NOT symptoms of Chiari, I will be looking for different dr once her surgery is done.
I started having problems with nausea about six months prior to my decompression surgery that only got worse after surgery. I now take two anti-nausea meds. It comes out of nowhere sometimes. I have tried smaller meals and am careful about what I eat but there doesn't seem to be any one thing that triggers it. I have had all the blood work done and this has been going on for three years now. It hasn't gotten any worse but it hasn't gotten better either. I have had insomnia for as long as i can remember. Not sure if its related to the chiari or not but i have tried everything and nothing works. I think i have been on every sleep meds there is and none of them work. I wake about every two hours and spend many late nights on the couch reading. Its not that I'm not tired. I'm always tired. I don't think I have ever slept for 8 hours except while in the hospital. Been doing it all my life. Finally just stopped all the sleep meds. I don't want to be taking things that just are not effective.
Common issues here, for insomnia your daughter is simply going to need to try trial and error insomnia tactics. Such as more exercise, hot bath before bed, no tv two hours before bed, no caffeine after 2pm, really try anything she finds calming. Personally reading in a dark rook room with a flex lamp helps me. Zanaflex is the only medication that helps me sleep when i really need a decent rest to attempt to function the next day.