Extreme Dizziness/Nausea/Vertigo

[Sug_97]

I've posted before with questions. I'm 2 years post-op and I'm awaiting a second surgery to repair/replace my duraplasty and install a shunt. I'm not sure all that the second surgery will resolve, but the build up of fluid around and in my cerebellum is the only problem my NS is seeing in my MRI. I have other non-related problems that I need to get resolved before I can have my second surgery, so I'm hoping for mid-February at the latest.

However, I started getting so dizzy and nauseated on Wednesday night. It was really bad on Thanksgiving and yesterday. Today, it feels a little less. I've had the dizziness/nausea/vertigo before, but never this bad. I basically get motion sickness whenever I walk or move. I'm fine sitting/laying still, as long as I don't close my eyes. When I close my eyes it feel like the whole room is spinning. I'm sure it's the dizziness that's causing the nausea. When I had to ride in the car it was so bad. I get heaving and had to have the windows down even though it was freezing cold. Anyone have this or know more about it?

[Sug_97]

Yeah, this surgery was pretty spontaneous. My GI had a CT scan done and found the problem with my abdominal shunt. It didn't hurt, but it did get uncomfortable as it collected more and more fluid outside of where it was supposed to go.

I've talked to my NS about the low pressure HAs and the pulling but it seems like he's lumping it all together. I've had the full spinal MRI a couple years ago and nothing else was wrong. They haven't given me any tests on EDS or Pots, only the run around. The neurologist said my skin doesn't look like EDS and he wouldn't know where to send me to be tested for it. He mentioned connective tissue, but then shrugged it off because of my skin.

This rubber-band feeling is different from the low-pressure problems I've had in the past.

[selmaS]

  Oh goodness I had no idea u had to have another surgery....did they check u for tethered cord? Or scar tissue..have u told ur Dr about this?

I have TCS and it does feel like pulling like that ..a rubber band is just how I describe mine.....

Did they rule out Ehlers-Danlos for u...POTS?

Are u keeping hydrated? Drink plenty of water while u have these low pressure HA's....did ur Dr give ne indication as to how long u may have these?

I have not heard of this pulling as a result of low pressure., but that does not mean it is not related....just that I have not heard this issue related to that.

I hope u r feeling better soon <3

[Sug_97]

You're always so good with advice...

I felt fabulous for about four months, then my shunt came out of my peritoneal cavity. The pocket of fluid was forming under my skin instead and I had to have another surgery to fix the bottom portion of the shunt. Once it was back in the right place my NS warned of low pressure headaches for the first several weeks... that was 11 days ago.

I am having these low pressure headaches, as it only hurts when I sit or stand and when I'm laying down, I feel perfect, but I'm also having this tightness from the back of my neck when I'm up. It feels like a giant rubber-band from the back of my head downward (like it's making it real tight and hard to move my head forward).

Have you heard of this before and do you thinking it's related to the low pressure?

[AnnieDear]

That is so good to hear! Fingers crossed for continued improvement :)

[selmaS]

  I just wish I had known and I would have posted a Prayer thread for u....sending prayers now as well as sending Healting MoJo for u : )

[Sug_97]

Selma, you should never feel bad... you are an amazing support for so many going through this. I can't tell you how much I appreciate you!