Living with Neuropathy - Welcome to the group

Thanks for your help and guidance! I’ll try an get a referral to a neurologist! It gets very frustrating! Thanks again! Take care

Jake, Hi. Thanks for getting back. New to Gabapentin. One month. No increases yet. Still 100mg. Going for 1st follow-up next week. All commonly discussed side effects. Drowsiness, dizziness, coordination, strength loss, brain fog, generally slow brain function, general motivation decline. Some pain reduction results from Gabapentin however, also some nights supplementary pain meds needed. I believe this condition is finally going to teach me patience (joking)..................which I've always lacked. D T

I always told my mother I did not have patience because I was not a doctor. She never thought that was funny. Congratulations on looking at the bright side of neuropathy.

Yikes! That's a lot of side effects for 100 mg!!! I'm so grateful that the only side effect I've really struggled with is insomnia. My doctor was so surprised when I told him that on Friday (30 day check in). He suggested that I switch from taking my meds at night to the morning. I did that Saturday (yesterday) - and Wow! Not a good idea. Initially I had a burst of energy that lasted a couple of hours - and then I did a wild crash and burn. I felt totally zoned out. Definitely could have slept (but didn't). So today I've decided to try taking the meds at dinner time. Hopefully the timing will allow me to get a good night's sleep!

Also - my doctor switched me from 3 - 100 mg capsules to 1 - 300 mg capsule. I know the measure is the same - but I wonder if the 300 mg capsule somehow had a different impact? Thank God I don't have to work until Wednesday so I had a few more days to play with this, and I'll be even happier when my last day of work rolls around on Nov 8th...

BUT - the good news is: 300 mg once a day definitely deals with my pain 🙂

I'm on Gabapentin & at first it made me so tired I couldn't take it but now I take 300 mg at night & it makes you sleep better & I am on 100 mg in the morning & another in the afternoon. I'm new to this Neuropathy & I have seen no help with the Gabapentin butI am taking Cymbalta with it & it gets me to wear I do function so I guess it helps to a degree. I just don't want to increase it anymore bc if you stopped it suddenly you could have seizures I have been told. Does anyone know a good med that gives relief.

Hi there @iceblue, Good to touch base with you. I am glad that you have found a medication that "deals with your pain". Re: the 300 mg capsule. Even though we know that it is the same as taking 3 - 100 mg capsules, we can't help but wonder if the dosage change was in some way responsible. All I can think of is the possibility of interaction with other items that you eat or drink at different times.

My dosage for gabapentin has changed several times in the last four years. I now take 1200 mg at about 9:30 pm. That gives it time to reduce the needles in my hands, wrists, and arms and offer some assurance of relaxing sleep. Check it out with a quick phone call to your provider or your pharmacist. If you have a patient portal program, you can just ask the question there.

Hang in there.....this is a time of exploration and experimentation. You have cheerleaders here. Find some joy today. Chris

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I would like to introduce myself as someone who has been living with Idiopathic Neuropathy for about 20 years. I have run the gamut with testing and several different neurologists. I've had EMG testing 2 different times with 2 different results, first no neuropathy or maybe small fiber, and just recently polyneuropathy. I really believe that vitamins, supplementation and nutrition would help. I've tried different meds but so far I'm dealing with the pain because I can't tolerate the side effects. I'll be 81 in January, and other than PIN, I'm in pretty good health. I'm wondering if anyone has had any experience as far as seeking out a professional who can help with nutritional and supplement guidance when it comes to neuropathy. The many different doctors I have seen over the years know absolutely nothing about neuropathy, that includes my Primary Care doctor, 2 podiatrists, 3 different Neurologists, and even physical therapy. One doctor told me it was called Idiopathic because the idiot doctors don't know anything about it, that made me smile. Thank you for listening. 🙂

Hi @rosy33: Thanks for your quick reply, it made me smile also! I'll be 81 August 2020! No wonder my primary doctor didn't offer any help when I told her the electric shock I felt on top of my right foot, because no doctor knows! Could it be vitamin B1 and vitamin B12 deficiency? What is PIN? Thanks!

So - do you take 500 mg of Gabapentin in a 24 hour period - but space it out?

I know my dosage will increase over time, but like you I want to minimize it for as long as possible. I'm not worried about stopping the gabapentin as my doctor and pharmacist have both advised I am likely to be on it for the rest of my life. SFN is not reputed to be one of those health issues that spontaneously heals 😉

Good Morning @ew100, The letters PIN are short for Peripheral Idiopathic Neuropathy, something I learned on another support site (NeuroTalk.com). I believe depletion of the B vitamins, mainly B1,12 and 6 have a definite effect on neuropathy. My urologist has taken a course in health and wellness and is helping me with vitamins and supplements. I just joined her group this week and started taking a special packet of daily vitamins. I will meet with her 5 weeks from now to see if it makes a difference in the symptoms of my PIN. I decided to do this because I believe nutrition and vitamins are essential to our health, especially at our age. There are so many different brands and kinds of vitamins that can be very confusing. My daughter is a certified health and wellness coach, and has finally convinced me that "We are what we eat". I have given up sugar and drinking smoothies and herbal teas which have helped me to lose 30 pounds over a period of 2 years (mostly belly fat). My daughter can't prescribe any tests so that's where my urologist comes in. Every other doctor I have ever talked to about vitamins, nutrition or neuropathy doesn't know anything about any part of it, even the so-called Neurologists. I asked my PC why my ankle turns white when I flex it and why it's red and hot, her answer was, "I don't know". We can learn more here in these groups with others that are in the same predicament as we are. I am into the nutrition side of therapy rather than meds. I am trying to stay away from any prescriptions for as long as I can. I am more than willing to help if I can.....😍