Pots and dystonia anyone?

[Nin]

I had what I thought were non epileptic seizures and now told it's not its likely dystonia! I had an operation 2 weeks ago and it's kicked off big time. Basically they start off with weird body movements and then whole body spasms. Had 6 after coming out of the operation, then 1 at home so my mum called an ambulance. Then gave me diazepam through the veins which stopped it within a minute. I've never had anything given to me that has stopped it.

Seems like my pots has gone crazy since op, even sitting up is triggering this and standing up and can't get enough air into my lungs. 

 

[Pistol]

@Nin I take autonomic ( also called hypoxic ) seizures, especially during or right after anesthesia! Mine were diagnosed during a stay at an EMU when I was hooked up to EEG and telemetry and had an event. They are thought to happen when my vessels constrict, therefore not allowing adequate blood flow to the brain. Medications, a slow lifestyle and frequent IV fluids have stopped them for the most part. There are certain precautions the anesthesiologists take now, including IV fluids before and during surgery. 

[Nin]

5 hours ago, Pistol said:

@Nin I take autonomic ( also called hypoxic ) seizures, especially during or right after anesthesia! Mine were diagnosed during a stay at an EMU when I was hooked up to EEG and telemetry and had an event. They are thought to happen when my vessels constrict, therefore not allowing adequate blood flow to the brain. Medications, a slow lifestyle and frequent IV fluids have stopped them for the most part. There are certain precautions the anesthesiologists take now, including IV fluids before and during surgery. 

The weird thing with these is the movements before it happens. The nurse asked if I had tourettes. Nothing shows up on the eeg and the paramedic said this is not a seizure and he's never seen anything like this before. Even eating peanuts trigger it and I got no explanation for that at all. Just be nice to find medication to stop it!

[GasconAlex]

I have muscle spasms and hypertonic muscles which may be related to the pots. Mine started after a failed operation (because my brain had collapsed into the ear space and was leaking CSF) and the hospital I was in was could not complete the operation without additional neurosurgical support.

They initially suspected an adverse reaction to the anaesthetic but now more likely to be neurological damage. If you are lucky (!) it is a reaction which apparently diminishes in a timescale of a few weeks (from what they initially told me). 

I take quite a bit of baclofen (70mg/day) which helps a bit but I still have spasms and myoclonus.