Cauda Equina Syndrome Discussion

bensan....im sorry to hear that.... ..its pretty much so annoying when one thing affects another. I hope that other than that, the festival was good?

I can remember many times suffering for days after over doing something, i used to get worn out so easily but now i manage to balance everything quite well.

Yes, I've had shocks firing from three locations at once (back and fourth) hard for 8 to 10 hrs. straight. I've had residual shocks from these episodes last for three days.
Our new member got me thinking and I googled Cauda Equina Shocks and was super suprised to see a bunch of info and others like me.
In 2010, when I google Cauda Equina there was almost nothing.  So thanks to ladygimpsalot I've found other's who get the torture like jolts.
Not that I'd wish these things on anyone, but it's kinda nice knowing I'm not alone with these. Wow, I'm pumped. I went over a year without meds and the lack of sleep was really getting to me. So I tried the lyrica and tramadol combo, and they have almost knocked out all the nasty episodes. I still have shocks,buzzers, burns, and stabs, but the meds taken care of about 90%of them.  Life is good! Now if I could find something to counter the sleepy effects of the lyrica and tramodol, Life would be great!!   Take Care... Mark

Sorry you have the jolts lara, they suck. I was on lyrica after my first bout of shocks. I was in Maryfreebed, the only semi-walker on the whole wing.
At the time I was on neruontin, which only seem to make the normal (burning pins and needles) seem more intense. But what did I know, think it was about 2 months after my operation. It was the night before going home and I got my first shock, then another, I remember thinking and even telling the nurse how strange they were. I found them amusing. they kept comming, I was watching the clock and you could almost set you watch to them. The time in between became shorter and shorter. The nurse came in and asked if she could do something, I told her I was fine, even though I had started making a strange noise with every jolt. Three hours later I couldn't take anymore (so I thought) and hobbled out to the nurses station soaking with sweat and heart feel like it was giong to jump out of my chest. I asked for the neruontin that they took and held at the desk. She said she had to call my doctor, an hour later I had a large dose of lyrica, an hour after I took it the shocks chilled enough for me to fall asleep. My doc was a resident, and she was on lyrica, she told me it was faster acting than gabapentin. Well I didn't want to be on meds so I only took them when the shocks started and it didn't seem to help much so I weened myself off it and delt with the shocks and figured it was what it was.

Fast forward to about 2.5yrs into the whole CES thing, shocks got more intense. I do want to mention that I didn't get the shocks everyday, sometimes I could get a week and a half with just the normal crap(can I say crap here). They had their own schedule, and no ryhme or reason to it.
So I had had enough and started back on lyrica, my vision got blurry, I had another doc, tell me to stop taking it. So I weened myself back off of it, way to fast. I don't reccomend it. The shocks came back in full force before I was completly off it.  So I went back to the doc and she decided to put me back on the lyrica and added tramadol. Bingo the lyrica works better for me with the tramadol.  It's the best it's been. The tramadol seems to make my lower legs number, so I can stay upright longer. Although tramadol is a synthetic drug, it doesn't give any kind of buzz, which is great because I didn't want to be a veg. Both meds have some pretty nasty side effect though, but I had to decide which was worse, the side effects or the shocks. I take the meds.

Sorry about the mega long post.    Mark

How to describe nerve pain?  I think that most of us have felt it.  It occurs most often for me at night when I am lying in bed.  It feels as if there are thousands of demons under the bed poking my feet with their pitch forks.  Or as if I am being shocked by electricity.  Apparently this is a good thing, or so I am told.  The nerves are trying to regenerate and do their jobs.  In my humble opinion though, they will not.  It's kind of like a corpse rolling over in its grave.  It will never get out and there is no use in it trying.

Doctors prescribe gabapentin and lyrica and other drugs as well.  These drugs have some bad side affects that will affect some people more harshly than others.  The gaba gave me what I call gababrain.  It made me more scatterbrained than I was before, and I have always been scatterbrained.  It made me feel as if I were walking around in a fog all of the time.  I have heard that lyrica is not quite so bad.  I had some one on one my other groups suggest alpha lipoic acid and I googled it with diabetic nerve pain. 

I found that the suggested dosage is 500 mgs a day and I take 3 200 mg capsules a day.  I found it at a nutrition store.  It really does help me without the side affects of the drugs.  But be careful, it might be a good idea to check with your doctor because Gabapentin is somewhat addictive and you might need your doctor's supervision in coming off it.  Also I have been told that it might cause problems with your thyroid if you have had thyroid problems before.

There must be something going on with CES  patients.   The past 3 days have been one of the worst for pain in my almost 7 years on problems.  No matter what I took the jabbing and shocks kept coming.  We were invited to my brother's home for a family dinner.  He lives about 2 hour drive from our home.  His children and grandchildren along with other extended family brought to total to 15 people.  Needless to say the 'pitchfork' into the foot made me a very quiet guest. Yesterday - the pain stopped - just as sudden as it started.