Quote:
Originally Posted by llrn7470
 I have had a total of five recent attacks that seem to be mediated by my spinal nerves and wanted to see if anyone has ever heard or experienced this. Be aware, this is kind of gross.
These "attacks" come at insignificant times-they don't coincide with worsening of my RSD pain, changes in my SCS levels, or any kind of outside stress. Just while I am sitting around or standing doing something. No heart-racing/palpitations. I am very suddenly becoming vaso-vagal (sweating, dizzy, disoriented, and feeling like I am going to pass out,) quickly followed by losing control of my bowels. Very embarrassing. This has actually happened in my sleep as well. Two of the episodes recently, I lost conciousness completely-flat on the pavement in a parking lot, then again trying to get to a bathroom after the "damage had been done." I was so disoriented that I was running into cars while walking towards the restroom and having difficulty speaking, couldn't think straight. I have no seizure activity and no seizure history. I don't lose control of my bladder.
Any ideas on this (very off-putting) stumper, my RSD family? Are my spinal nerves trying to make me die of embarrassment? |
Hi llrn, I know it's embarrassing-it happened to me. It's been about 5 years ago-10 years into my RSD-full body, and internally. I woke up one morning and needed to go to the bathroom-I got up and was dizzy, stumbling into the wall-door and got to bathroom and on the toilet-knew I was going to pass out-saw a bright white light and tipped over and while passing out realized I was losing my bladder and bowels. My husband was upstairs at his desk -he heard me get up. I woke up and couldn't get up, so crawled to door and banged on door. He opened it, and I said call 911-he was in shock and I had to say it 4-5 times. He said I was out an hour and half.
RSD is an autonomic condition, meaning we have no control over body temperature, body organs, like heart, lungs, bladder, bowels, blood pressure.
The sympathetic nervous system causes blood pressure to go up. the para-sympathetic nervous system causes it to go down. If goes down too much, we pass out. I passed out again and when paramedics came by pressure was 60/40. Paramedic couldn't find pulse and told my husband I was dead.
Was in and out and in semi icu 6 days. My Dr. said once it happens we are likely to have it happen again. I have a friend here in Phoenix, who has had it happen 3 times. All times were in bed. My experience was I have lost my bladder 3 times in bed, but not bowels. I have been close to passing out, while shopping and having my head down too long. Dr. said, be careful not to hand head down while shopping.I've twice had to call my husband to come pick me up.
I bought a blood pressure kit at Costco-$30. and take my pressure regularly. I can tell when my blood pressure drops. I get real sleepy and tired-weak.
I was on 3200 mg of neurotin, but gradually went off of it. I think I was on it when this happened. I've been off that and lyrica for maybe 3 years now and it is extremely rare to have a siezure, jolt, jerk, spasm.
At the hospital, they did $35,000 worth of tests. Nothing was found except I have RSD.
I hope this helps and hope you don't go thru this anymore. I really don't know why this happens or why it stops. I am still on guard, that's why I pay attention to my blood pressure.
Take care, I'll share anything that might come up. Your friend, loretta