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How Long Did Your "Honeymoon" last??

RRraeRRRrae Posts: 85
edited 06/11/2012 - 8:44 AM in Spinal Cord Stimulation
I'm almost 5 months with my Lumbar SCS and love it.
I was getting 75% pain relief.....BUT that is when I was titrating off the powerful fentanyl patches. It took me 3 months to safely taper from the 100's down to the 12's and now I'm done with them.
I have Lortab on hand for breakthru pain, but since I don't use the patches anymore, I am going thru the Lortab faster than I should be.
Now I am getting maybe 50-60% pain relief with the SCS.

My CONCERN: Are my body's pain signals figuring out how to get around the stimulation (meaning the honeymoon is over) OR is my body still needing the opioid that I've since tapered off of?
Everything was PERFECT when I had the 25mcg patches on hand. They covered the 25% of relief that I wasn't getting from the SCS (75%)
I do not want to ask my Dr for more patches.

I think the Dr is of the impression that the SCS is supposed to completely get rid of the pain and is even thinking I should be lowering my dose of Lortab for the breakthru pain.

What do YOU take for pain with your SCS.
In particular 'BURNING' neuropathy pain.

I do not want to get back on Neurontin and Lyrica (they messed me up bad 4 yrs ago)
Oxycontin is wayyy too expensive and I didn't really care for it and I pay out of pocket for my meds.

Is there just a simple med that I have overlooked that targets burning nerve pain that can be taken on an 'as needed' basis.
I just don't know how to approach my Dr about this.

If I sit on my A$$ all day and don't do anything, I can get by, but I have aLOT of responsibilities and I must be active. I WAS able to do all these things WHEN I had the cocktail of Fentanyl 25's and Hydrocodone on hand for 'as needed' during the times my body required extra exhertion
(Caring for horses, business meetings at office, housework, being a 'mom'...?)
But now if I do any of the above on a given day, then I am pretty much bedridden the next day or 2. And this is WITH my $100k unit in my butt!!

Does anyone else have pain meds on hand that pick up where the SCS leaves off?


  • I never stopped taking my pain meds. In fact, I've increased what I take over the last several months. Of course my problem is a little different than yours in that I am progressively getting worse. I'm hoping for the day when my legs level off and I can just maintain. I have no real answer for you but to tell you that misery loves company, so welcome to the party.

  • I approached pain management a bit differently with the SCS. I had surgery to remove the pain generator, then detoxed off all narcotic meds and then had the SCS implanted. All the while I remained on Neurontin although we did try to decrease it after the SCS was implanted. When the pain was breaking through more, I went back up on the Neurontin to the level I had been at before and it stopped the worst of it.

    There are several other meds that fight neuropathic pain besides Neurontin and Lyrica. Some have been around for a long time and have proven to be very effective.

    I would recommend speaking to your PM doc about your breakthrough pain and see what kind of ideas he presents to you.

  • Hi RRae,

    I can't answer your specific question because I don't have a SCS yet, but as far as meds:

    It was unconventional, but my neurologist had me taking neurontin as needed for awhile...My PM doc found this extremely odd because neurontin and lyrica are both supposed to work by building up in your body so they aren't really supposed to be used on an as needed basis. But, for me it worked. I had burning, shooting leg pain that was tolerable some days, but other days it would flare and be intolerable so I would just take a neurontin on the days I had a flare (usually only one day a week, so not very often). It brought the pain down to a tolerable level. I know you said they messed you up, but maybe taking them as needed instead of having them built up in your system would give you less side effects? It's a question for your doctor, and again, it's an unconventional way to use that drug- my PM doc probably would not have prescribed it like that, but the neurologist I was seeing thought that as long as it controlled the pain it was fine.

    Just an idea you might run by your doctor...Sorry to hear you're having increased pain.
  • I appreciate the input (as always) :)

    Lala, yours caught my attention in the same 'odd' way your PM did......as I am under the impression these meds (Lyrica, Neurontin) are supposed to be taken on a regular basis...... BUT heck.
    I'd certainly give the Neurontin another try if that would happen to work in my case!

    Dave, are you still using your SCS as before? If so, are you needing to use higher settings?

    C, I need to 'refresh' my brain as to what all the meds are that target neuropathy.....
    Meanwhile, I'll just bite the bullet and take the pain, cause I just can't stand the thought of going thru the nightmare of Lyrica and it's 'sister' meds.
    Those off label-anticonvulsion/epileptic meds were not my cup of tea.

    But they do seem to work for alot of folks
  • Actually, I've had to turn down the amplitude as I have scarred in. The stimulation pattern has gotten stronger rather than weaker like most people. I gotta be different. I do run mine 24/7 now. I still have to change programs frequently throughout the day, hence the topic by BionicWoman is quite intriguing to me.

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