Sleep "episodes" post surgery?

[megthp]

Hi all  - Sorry I keep promising full post-surgery updates and I haven't been a very good forum participant.  I have a pressing question though so again I'm going to put off my full update...

fI'm 16 days post op and have aseptic meningitis, which may or may not be responding to the steroids they put me on (day four of steroids, still have intermittent fever and lesser, but still bad headache).

I keep having these "spells" which seem to always correlate with sleep. First one - woke up from a nap shaking head to toe.  It subsided after a few seconds.  The second two - woke up from a nap with shock-like pains head to toe that only lasted a second, but were very painful and left me out of breath with heart racing.  These I've told the doctors about during the meningitis work up and they weren't too concerned.

Number four - sleeping at night and woke up and couldn't move my body at all.  I was trying to wake up my husband sleeping with me but couldn't do more than grunt.  It passed within a few seconds.  My husband woke up and comforted me.  We chalked it up to a bad dream.9d

Number five - napping again, woke up with my head shaking back and forth somewhat violently.  Thought it was a dream and tried to go back to sleep.  As soon as I feel back asleep, it happened again.  When it subsided, I called for my husband and immediately tried to fall back asleep to see if he would see it.  When I fell back asleep, it happened again.  He said he saw my head shaking back and forth and I was mumbling (I don't remember the mumbling part.

Number six - sleeping last night and dreaming.  I dreamt I bent over to pick up some black beads (random, I know).  As soon as I picked up the beads, I started shaking head to toe and woke up.  It took me a while to fall back asleep.  

Number seven - a few hours later, I woke up and couldn't move.  I waited for it to subside, moved around a bit and tried to go back to sleep.  As soon as I fell back asleep, it happened again.  This time when I woke up I tried to wake up my husband but I couldn't move or do more than grunt.  He didn't wake up. As soon as it subsided, I decided to let him sleep (not sure what I was thinking there) and waited for a while to try to go back to sleep.  The rest of the night was uneventful.

So I'm calling my doctor now, but I'm so worried that this is going to be one of those types of complaints that will make the doctor think I'm crazy for sure.  I know weird things happen after brain surgery with nerves waking up and so I haven't worried too much about these, but its starting to be too much of a pattern.  Has anyone else experienced anything like this??  Am I going crazy??

Thanks as always...

[linnielou232]

Sweet dreams.  Before going to sleep think of laying on a beach or something restful.  They say when entering your deep sleep you will go to what you were thinking before you go to bed.  Hope you get some rest, and thank you for hopefully helping you understand because it is very scary, but does get better.

[megthp]

I'm sorry to hear you've had this your whole life - how scary!!  Glad to hear they've slowed down though.  That must be a relief.  I usually move from one side, to my back, to my other side throughout the night, but don't usually "toss and turn".  You?  Have you noticed any sort of pattern?

Thanks for posting your experiences - makes me less scared :) Though I'm sorry you've had to deal with it.

Hope you have a nice restful night tonight!

[megthp]

Thank you so much for posting Linnie!!!  Your post makes me feel so much better.  I've been thinking it was something like that too - shock, nerves waking up, healing - but to hear that its happened to someone else (though I'm sorry you've had to go through it!) and it subsided makes me so much less worried.  Huge sigh of relief.  I'm still gonna talk to my doc just in case but I really feel much, much better.  The way you explained it sounds exactly like what's been happening with me, right down to the fear!  I have been resting a lot but maybe not getting to that state of deep sleep, you're right.  Same with last night, though last night I couldn't sleep due to headaches rather than episodes.... sigh... well, here's hoping for some rest tonight.

Thanks again for posting and your well wishes.  Still haven't heard from the doc.  Talked to his nurse yesterday, who said she would tell the doctor everything and get back to me, but of course I never heard back.  Very frustrated too, but today trying to focus on the positives and enjoy the company of some good friends in a bit.

But not to sound like a broken record, you've really made me feel so much better.  Thank you so, so much!!  

[Lissamel84]

I have had this sleep paralysis my whole life, but it kinda slowed down after the surgery.  Weird, but I usually have the opposite outcomes from surgeries.  Are you sleeping on your back or your sides?  Do you toss and turn at night, sometimes more often than others?

[linnielou232]

I had to have 4 surgeries in all and after all of them.  I also experienced what you are going through.  What my Dr said was my body was in shock.  You could be experiecing the same issue.  It is scary.  The bending issue.  I have had that also.  I dreamt that I was working and was doing a lot of bending etc. and woke up feeling such a severe headache because of it.  It sound's to me that your not getting into a deep enough sleep so your body isn't getting the rest.  I just remember how scary these episode's were.  For me that have subsided and I'm hoping the same for you.  I would be so flustrated with your DR.  have you heard anything yet?
Hoping for better rest for you.   :)  Linda

[megthp]

Thanks for sharing your experiences!  Sounds a lot like mine. And drewlevas, I'm sorry for your doc struggles.  So frustrating!

Good news is I had a good night of sleep last night.  Had a nap today that was pretty much ok too - had some wierdness but not like before.

Bad news is I still haven't heard from the NS, on this or the meningitis where my symptoms haven't responded to steroids.  Argh!  I did at least get to explain everything to his nurse and she said she would send him a message and get back to me.... nothing yet... I have had calls from them as late as 9pm before so I haven't given up hope yet for today...

So, as so many of us are on this forum, just feeling frustrated today...

[Rahe28]

I have had those kind of spells but without the shaking since I was a little girl. I never really thought much of it. Makes me wonder. When I wake up its like I am frozen....I can see ...but I cant yell or move. I can hear myself yelling...but nithing comes out. Sure hope you get to feeling better soon, and get some real rest.

[drewlevas]

Well I'll wake up with a racing heart and kind paniced, but I won't be able to move, and it comes back slowly normal. It freaks me out every time. My doc didnt even raised an eyebrow when I told her, she didnt seems to think it was much, maybe over tired or stessed she said!

She as been trying to give me stress pills for the last 3 years (ever since she's my doc), and I refused everytime. I dont need stress pills, just a comprehensive doctor! Well she stop telling me last summer that everything I was telling her was in my head when they found out my Chiari! So now I'm not an hypochondriac anymore ;).

So I dont know what cause my sleep paralysis. But since I didnt get decompres, and you did. The only thing I can tell you is to make sure to mention it to you NS or at least to your doc.

I hope you are going to have an unevenfull night, you need one.

Keep us posted,

Drew

[megthp]

Nothing from doc yet...  

You have sleep paralysis?  What happens?

[megthp]

Thanks Selma!  I called the doctor hours ago and haven't heard back... arggg....  I have a bit of a love/hate relationship with my NS's head nurse.  I'm trying to be patient though.  I also want to talk to them cause they told me to call in and update them 48 hours after my ER visit for meningitis, which I did yesterday and still haven't heard from that call either, but I still have a significant headache and intermittent low grade fever so I'd like to update them on that.  And also they changed my pain med dosages while in the ER and the new doses seem pretty ineffective - ie I can't even tell I've taken anything - so,  needless to say I have a list for them and am fairly anxious to talk to them, and annoyed that after leaving a vmail yesterday and using the hospital paging system today, I still haven't heard back from them...

Enough venting :)  Thank you for the forum advice!!  Will do

[drewlevas]

Did you call your doctor? What did he said?

[drewlevas]

Sleep Paralysis. That would be me! And it's scary when it appends.

[selmaS]

  Hi...I am so sorry u r going thru this, and we all seem to have a different experience, but I would call and let the Dr know what is going on....as u do not want to hurt urself if u r whipping ur head back and forth.I do not remember this being an issue b4, but in MHO this could be ur nerves waking back up and being over stimulated....some of us experience twitching and jumping, urs is a bit more then that and could be due to ur infection...Still call the Dr and ask.

The inability to move when u awake, could be sleep paralysis...I do recall someone else asking about this ....

  When in doubt- call ur Dr..

And post all this...copy and paste to ur journal...that way u do not have so much to add...and u can add as u go....