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@mikead63

@dbeshears1 Good morning (my time!) Debbie! As a recent diagnosed IPN person I would be interested in your journey with gabapentin. I'm on a dose of 600mg before bedtime that has been working fine for me but not knowing what the future holds. Did you start on a lower dose and then increase the dosage over the years as needed? What dosage are you on now? Do you take the complete dosage at once before bedtime? P.S. I applaud you for questioning your neurologist's suggestion, especially when you were doing fine at the time! More people need to "question" their docs rather than just go along with their recommendation(s). Have a great day!!

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Replies to "@dbeshears1 Good morning (my time!) Debbie! As a recent diagnosed IPN person I would be interested..."

Hi Mike - When I got hit suddenly by my IPN, I was in the hospital 2 weeks then transferred to a rehabilitation place for 5 weeks since I was reduced to a wheelchair (which took 6 months for me to strengthen back up to my feet/walker, and driving again) The small hospital system in my area didn’t have strong Neurology Specialty, and I was 3 weeks into the rehab place before I actually had an appointment with a Neurologist! I was miserable with pain, and constant freezing & burning in my hands and feet that left me helpless and consumed, and unable to sleep long.

At 5 weeks of misery, he started me at 200 mg a few times a day. With the rehab nurse’s guidance, we were at 800 mg 3x a day by the time I left. I think it took a good 2 months before I believe I was at a sweet spot of not feeling the distracting temperature sensations and pain. I had permission to take up to an extra 800mg if needed, but have only done that about 5 times over the years.

I’ve been at 800mg 3x daily for about 8 years now. I am well moderated and adjusted, hence my reluctance to just arbitrarily add Pregabalin to my arsenal if it’s not a cure. I prefer to take my pills at 10pm, 8am, and 3pm because I don’t wake up sore and find that activity during the day works up my discomfort vs sleep. I sometimes accidentally miss my 3pm dose and don’t realize it until bedtime. But usually my body tells me by 5pm if I missed that dose. Nothing severe, but a little discomfort that alerts me to check to see if I forgot. Sometimes it might take a couple cycles after missing one to get back to even keel, so I’ve learned to stay on schedule even if I’m having a great day to try not to set myself back.

Good luck with your program. Like a lot of folks here, I have other medical things to watch too, and have to keep on my toes with specialists who might not see my “total picture”; the last thing we need is perceived help for PN hurting other body functions. I take advantage of physical therapy too. I’m trying to stay as strong as possible and keep moving in smart ways and not develop bad habits. Wishing you the best!