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← Return to PN: From Anger to Acceptance
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@jakedduck1 Jake, interesting point. Was on phenobarb and dilantin from 1972 to about 1979. Then in 1979, phenobarb eliminated. Since 1979 been on 600 mg. of 'dilantin daily which has held me well, levels around 8 - 10 and I've tolerated it well. I have raised same question since my dx. in 2015 and all neuro docs said likely not. If dilantin was the cause, docs feel neuropathy would not have waited 35 - 40 years to show up. Yet, as you know, no doc is going to drop the dilantin if it is working...why take a chance. Perhaps you might be able to answer a question. Some folks have pain related PN and docs will prescribe dilantin for pain. I found that to be a little confusing because yes, dilantin is a known to be a POSSIBLE cause of PN. I have no pain with my PN, only numbness and horrible balance. So, is the dilantin the cause of having no pain with sensory motor PN? When I ask neuro docs, including those at Mayo, they don't know. Something else to add to the mystery. Ed
Replies to "@jakedduck1 Jake, interesting point. Was on phenobarb and dilantin from 1972 to about 1979. Then in..."
@njed
“So, is the dilantin the cause of having no pain with sensory motor PN?”
Like your doctors, I can only speculate. I believe the longer these horrible medicines are taken the greater chance of it worsening our neuropathy. We both took the same meds and have neuropathy. I can't scientifically prove Dilantin was the cause but I believe it's reasonable. The sad part is I'll never really know for sure but I started out with neuropathy just on the bottoms of my feet it eventually progressed up to my waist, then caused ED, bowel problems, and urinary problems and leg weakness. I do sometimes wonder if the medication (Carbatrol) is making it progress at a faster pace, although it has been 37 years. When your doctors said they didn't believe it was caused by your seizure meds I don't think their opinion is any more reliable than mine. After all, you, me and the doctors are only surmising. But I believe the evidence is there. Was your Dilantin ever in the toxic range?
Dilantin is a non-linear drug and mine became unstable. No matter how it was taken my level remained toxic. Toxic levels are even more likely to cause neuropathy.
Jake
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"I have no pain with my PN, only numbness and horrible balance."
It's the damnest thing. I've caught myself wishing I had pain––at least a little––to go along with my PN. It seems every time I tell a neurodoc that all I have is numbness and a silly (read: precarious) way of walking, he begins to lose interest. I've grown to accept what appears to be a doc's fading interest as his way of signaling that without pain, he's nothing to suggest, no drug, no therapy, no at-home regimen, absolutely nothing. As you say, Ed, something else to add to the mystery.