I would for sure check up on all possible causes, like those from meds and such, but I did want to throw out there also that I have a relatively benign condition (had it long before the CRPS) called neurocardiogenic syncope Of course, they did a total workup (brain, heart, etc.) before coming to that conclusion. There is a relatively simple test called a tilt test that can confirm the diagnosis, although not reacting on the test doesn't mean that you don't have it.

For me, it's a reaction to pain. I have a pretty decent pain tolerance luckily, but when something hurts too badly, I have a tendency to pass out. The neuro said that the only danger really is that I'd hurt myself (like you did) during one of the faints.

I've gotten pretty good at reading the signs. If I feel it coming down, I can't always communicate it to others, but I can sit quickly. While I can't always ward it off entirely, I can at least prevent myself from injuring myself.

Again, no clue if this is what you have, but I thought I'd throw it out there just in case.

Firstly a hug to Ali.

From what Alison has said she has a diagnosis of dystonia.

The severe shaking whilst passed out suggests that it might be a dystonic storm. The codeine and diclofenac may be causing a dystonic storm from tardive dystonia. The problem is that pain doctors don't tend to know what a dystonic storm is (as, as ever, it is pretty rare) and neurologists tend to not have that much knowledge of storms. Mine were diagnosed by a movement disorder neurologist after several weeks hospitalisation after going into status dystonicus.

I'm only suggesting it may be a dystonic storm as I have had these for the last three years or so and I also pass out from pain. Like Ali mine (90% of the time) occur in the evening. I can only draw on my personal experience by for me it is very important that, especially in the evening, I am in a safe place as I tend to get injured during storms but this is probably due to the mix of generalised dystonia, HMS and RSD.

I do wonder if the ketamine has anything to do with it as I am also on ketamine and another girl I know who takes ketamine also has evening "issues"..

It might just be worth checking out about the dystonic storms as there are some meds that can be used to deal with them.

Love, hugs, and understanding of how scary this feels (and James sends his love as he knows how scary it is to be a responsible bystander!)

Rosie xxx

PS WILL CATCH UP EVERYONE... PROMISE!

Hi everyone,

Thank you all for the support - I really appreciate it !

I've had an appointment today with my Neurologist and he has diagnosed me with a severe cause of Reflex Syncope. It is caused by the autonomic nerves and a severe drop in blood pressure and heart rate which causes me to faint and have seizures similar to Epilepsy. It is believed to be caused in my cause by the pain so we need to try and get that under control for it to get at least somewhat better. The problem is because of my back injury, I can't have the Baclofen pump which could help reduce the pain!

It's really scary and I have been told that most people have it from puberty until their 20s however because of my RSD, I could have it forever until the pain goes away.

I've collapsed about 20 times today - the worst my Neurologist has seen on average is 15 times daily.

I'm having a back MRI soon so i'm hoping that once we know the results of that we will be able to tell what is wrong and decide whether we can go ahead with the pump.

Thanks again for all your support and i'll keep you updated.

Alison

My first 2 years with arachnoiditis/crps2 i passed out hundred of times because my nervous system was so confused. its sorta like an old computer that locks up. computers lock up and humans pass out due to pain. i was told that when you pass out from pain a lot that your pain is in the high 20's,yikes. i hated the fact that when you get that 'sensation', i didnt know if i was going to puke or faint so i had to get ready for both and fast. i also wore rollerblade wrist guards to protect from fracturing the wrists from falling because sometimes you dont have enough time to get down to your knees.

i know you are trying to be as active as possible(and this is great) but remember when stuff like this happens you have to listen to the body and take it easy. i know what your thinking, DUH!!!!, i am just reminded you.

take care and if this persists, even though you wont like the looks of it, you might consider at least wearing a bike helmet. you dont want your life to get any worse than it is and if you are fainting 20 times a day, the odds of you falling and hitting hard are going up...

take care Ali,

mike