Is narcolepsy a common thing with Chiari 1?

[FlowerGirl123]

Hey guys, it's been awhile since I have been around... haven't been doing so well, having a hard time dealing with things... but, I was just wondering, if narcolepsy is a common thing with Chiari 1, or if any of you happen to have it? I have tried to do some googling on it but, I haven't found too much on it.. most everything I found is on apnea.

[selmaS]

Hi....sorry to hear you are not doing well, but glad you stopped by to ask a question....I am not aware of narcolepsy being  a common issue for those with Chiari , BUT feeling tired and never rested after sleep and insomnia are common .....so it is possible to seem like narcolepsy even if it is not or never DX'd.....
Again I have not heard of others with Chiari listing this as an issue.

Have you been DX'd with narcolepsy? May I ask how, when?

[FlowerGirl123]

Thank you. I hope you're doing well. I've been having issues for a long while, of randomly falling asleep... I could be in the middle of a conversation with someone and pass out asleep... and, then they can't wake me up, until I am fully ready to wake up. I had a sleep study and I don't have sleep apnea, and the weird part to the doctor is, I don't feel sleepy during the day, even though I don't get a lot of sleep when I go to bed, because I wake up with pain. I still always feel fully rested. He diagnosed me, with a mild form of narcolepsy, and put me on Modafinil, and since being on it, I have yet to just pass out asleep randomly. He said he wants to do some more testing on me, an EEG and a nap study, as well... to make sure nothing else is going on... since usually with narcolepsy, you're sleepy all the time, and I am not. So, I was just wondering if this is just something that may be connected to chiari.

I was diagnosed last year with trigeminal neuralgia and occipital neuralgia, after being is such severe pain forever... and neuro after neuro not wanting to believe me.  I kept being diagnosed with a migraine. *sigh* I don't think either of those are linked to chiari. But, after finally getting to see a neuro in Dr. Green's practice, I found out a lot more about how bad my chiari is. He recommends that within the next few years, that I go in for another surgery. And, I have another syrinx growing lower in my spinal cord, that none of the neuros I had been to, ever found. It's all just very depressing for me.

[selmaS]

Too many Drs do not look below the cervical spine for a syrinx and they can and d o form in all areas of the spine so a complete study of the spine must be done in order to rule out a syrinx. Unfortunately not all Drs that say they are Chiari specialists really are, if they were they would look at the complete spine and at all related conditions. Your trigeminal neuralgia and occipital neuralgia can def be related to Chiari although not all with Chiari develop these.
WHy in a few year to have surgery if you already have a syrinx forming?