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SCS Sleeping---More Pain?????

monibmmonib Posts: 102
edited 06/11/2012 - 8:39 AM in Spinal Cord Stimulation
This is going to sound strange. For the last week I have been waking up in the morning with that..."DON'T MOVE" feeling. Once I begin to move I hurt so bad I want to cry...here is the strange part...I can get up move around for about 5 minutes and the pain goes totally away. NO I AM OFF ALL PAIN MEDS....Yeppeeeeeeeee I don't know what to make of it. I also wake in the mornings with the stimulation so strong I want to kick the wall out. About an hour after being up...I am back to the same level stimulation I was at when I went to bed. Any ideas? Weather related? Stress related? I have been under a lot of stress lately, don't think I can handle anymore and then more is piled on me.


  • For many people, their intrathecal pressure will be higher when they first awake in the morning. There are many studies that have been done on this in relation to elevated intracranial pressure with people who have shunts installed to drain off excess CSF since their bodies have lost the ability to adjust for the increase in pressure.

    I found right away, that anything that increases my intrathecal pressure (bending, coughing, forceful valsalva, bearing down as in using the bathroom) causes an increase in the stimulation from my SCS. A friend of mine who has a brain shunt and I were discussing this one day and she talked to her NS and he concurred on the issue of increased pressure in the morning.

    I've read quite a bit about it and it's quite interesting how something like an SCS and a person being in-tune with their body, can discover something that docs have been studying with CSF drains and lumbar punctures for years.

    So what I'm getting at, is this is something I experienced right away after I got my SCS. I became curious, watched what activities caused an increase in the stimulation and came up with a hypothesis that appears to be pretty in line with what my friend's NS said and the multiple studies I've read.

    Take it for what it's worth, I'm just another SCS owner, not a doc.

  • The stimulation always increases when you lay down. Do you have a night time setting or do you just leave it the same as your day setting? Some people turn their SCS off when they go to bed.
    Try turning it so low you can't even feel it before you lay down. That may help or if you do not have a night program ask your rep for one.
    Just a thought....
    Patsy W :H
  • patwhite101 said:

    The stimulation always increases when you lay down.
    As it has been explained to me, positional changes in stimulation will lesson over time. Once the leads have scarred in, they will maintain their position in relationship to the spinal cord. The Doctor who did my implant said it will take up to 6 months for this to happen.

  • dave said:
    patwhite101 said:

    The stimulation always increases when you lay down.

    As it has been explained to me, positional changes in stimulation will lesson over time. Once the leads have scarred in, they will maintain their position in relationship to the spinal cord. The Doctor who did my implant said it will take up to 6 months for this to happen.

    Dave, this is not 100%.
    I am at 8 months and have not found a setting I can sleep with yet. I manage to sleep with Valium, Flexeril, Benedryl, Ambien, etc, sometimes all of that fails. Everyone is different. No narcotics for me, so on occasion I find myself up at 3:00 am, just like the good old days. Only now it is for some more Valium, which thankfully usually works!
  • As you know, I'm still a newbie with the SCS. I started sleeping with it on at night about two weeks ago. I have a mild setting that works when I'm on my back but when I roll onto my side, I don't get any stimulation. To get stimulation on my side, I would need to turn it up really high (jack hammer mode) and it only works on the upper leg. I'm pretty sure at that level I would feel as if I had been electrocuted if I rolled over in my sleep.

    I sleep with Oxycodone, Zanaflex, Trazadone, and a little stimulator. I hear you with the nighttime crap. At least I don't pea the bed.

    If I'm wrong, sorry, I base my information on what my Doctor has told me. Logically it makes sense to me. I'll be able to answer the question for myself in 5 months.

  • When you combine gravity with weight with position and a thecal sac that is somewhat compressible and pliable, it's only a given that the stimulation field and strength is going to change when an individual lays down or changes position.

    Think about a long thin balloon that is typically used to make animal shapes out of. If you try to press it flat between your hands the shape and pressure inside change, because it is a "sealed container". Spinal cord stimulation fields change depending on the density of the dura and the intrathecal pressure.

    So think of the balloon, when the pressure inside the balloon is lower, the balloon hasn't expanded as much and the balloon walls are "thicker" making it much more difficult to pop it. So when the intrathecal pressure in your CNS is lower, it takes a stronger signal to penetrate the dura. Leave the SCS on the same setting and increase the intrathecal pressure, now it "stretches" the dura thinner and makes the stimulation feel much stronger.

    Depending on what type of lead, where our leads are scared in, and how close to the nerve root they are, your body position is going to in essence "push" the leads closer or "pull" them further from your nerve root making the stimulation very positional.

    Placing SCS leads is not like putting in rods, plates or screws into bone and anchoring them. The SCS leads are scaring onto a pliable, movable, pressure filled vessel so it is a given that the stimulation is not going to be rock solid and constant.

    I hope you all can find a way to set your stimulators so that you can sleep and still have some decent pain management.

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