Neuropathy: Anyone have any experience with gabapentin?

Sorry deb I typed in jake….I meant deb…

May I pray for you tonight deb. You won’t be in a wheelchair . You’ll know when I pray the warmth of Christ will flow through you.

Ken

Please do pray that my legs get stronger 🙏

I was on it for a short time!! It made me sleep all day and no energy. It took the pain away but my mind was aweful..Made dr. take me off it.

It affected my breathing, worked great for the nighttime pain but had to stop it. I worked hard at the “mindfulness” strategies from the PN Foundation site and Mayo PN site page, someone told me it was akin to “self-hypnosis” and the Lamaze method of managing childbirth pain 🤣🤣, it works for me, but you have to really concentrate on the strategy you’re using.

I have been on a very low dose for about 5 mos. Initially I had very vivid and unsettling dreams. There was often violence involved with people in my past that were and are friends of mine. I stopped taking it for about 4 weeks, and then started again. The frequency of those dreams has been reduced significantly, but will still occasionally have dreams that when I would wake, would leave me in a bad or mad state of mind. By noon I was unable to recall my dream, but one very interesting “type” Of dream was being dreaming in my dream. Kind of hard to describe. So it felt I was waking up several times in the night, but it was on,y in my dream’s dream.

I had a diagnosis of idiopathic small fiber neuropathy in 2014, was offered gabapentin but I chose not to take it because my symptoms were infrequent and only in a couple of toes so I didn't feel the need to take any medication. In recent years I have had increasing symptoms in my hands and feet but I am close to 85 years old, have stage three congestive heart failure, had two surgeries in a 14 month period of time, and chose not to seek a neurologist's evaluation. I have obstructive and central sleep apnea and my restless leg syndrome (RLS) had quit responding to ropinerol. I was losing a lot of sleep; my sleep doctor prescried gabapentin for the RLS, starting at 100 mg before bedtime, increasing to 300 mg before bedtime and it has been wonderful. I have had none of the side affects and all of the benefits; my shooting pains are gone, and perhaps it is a coincidence, but what I had thought was osteoarthritis in my wrists and ankles have not occurred since I reached the 300 mg dosage. The relief has been significant.

Hello @jobli0, Welcome to Connect. Thank you for sharing your experience with gabapentin. It is good to hear how it has helped with the RLS, sleeping better and relieving the shooting pains.

Do you mind sharing how you found Connect?

Hello
I had Covid two years ago, and was hospitalized for 3 months. I spent 6 weeks in ICU, on the vent for 2 weeks, had a heart attack while on the vent. My husband said each day the doctors called it was worse than the previous day until they told him they didn't think I was going to survive, but I did at a severe cost. I walked in the ER and have not walked without a walker and AFO braces since. I now have drop foot, and neuropathy. The pain in my feet is so severe that I cry out several times a day. Medications merely make me sleep upwards of 18 hours a day. I had to stop Duloxetine for that reason. I have read of a Decompressive surgery that may help Neuropathy pain. Any ideas on this ? I am desperate.

Hello @rpc, Welcome to Connect. I'm sorry to hear that your neuropathy pain symptoms were caused when you had COVID two years ago. That must have been extremely difficult for you and your husband. There is another discussion you might want to read to learn what others have shared has helped them:
-- Ideas for pain relief from Small Fiber Neuropathy (SFN):
https://connect.mayoclinic.org/discussion/ideas-for-pain-from-small-fiber-neuropathy/

I have no experience with decompression surgery but have read it can reduce lower back and leg pain, carpal tunnel, as well as other pain caused by nerve damage. I'm pretty sure this only refers to when your pain is caused by spinal compression. Mayo Clinic has some information on foot drop that may be helpful here - https://www.mayoclinic.org/diseases-conditions/foot-drop/diagnosis-treatment/drc-20372633.

The Foundation for Peripheral Neuropathy has a list of complementary and alternative treatments that have helped others here - https://www.foundationforpn.org/treatments/.

Has your doctor mentioned any treatments that may help your foot drop or alternative treatments for the pain?