This is my first post about P/N which I've experienced for 15 years starting at age 65. It progressed from my feet up to my thighs and it is felt in other upper regions of my body - even my face. My Internist prescribed Gabapentin 100 mg but the side effects are off putting (dizziness) so I have NOT started this medication due to being semi-ambulatory and already have poor equilibrium, therefore I don't want to add side effects which will further increase disequilibrium. My question: I request others who have taken Gabapentin to offer their experience with this drug and how it may (or not) have helped ameliorate the discomforting symptoms of neuropathy. My thanks for any information.
Hi @hurtsalot, welcome to Connect. Thank you for sharing. I only took gabapentin for a few weeks when I found out it only helps with the pain and does nothing for the numbness so I stopped taking it. I have idiopathic small fiber peripheral neuropathy which I've had for 20+ years but only got it diagnosed a few years ago. I only have numbness with my neuropathy. I would have the same concerns as you on the side effects.
Hi @hurtsalot, welcome to Connect. Thank you for sharing. I only took gabapentin for a few weeks when I found out it only helps with the pain and does nothing for the numbness so I stopped taking it. I have idiopathic small fiber peripheral neuropathy which I've had for 20+ years but only got it diagnosed a few years ago. I only have numbness with my neuropathy. I would have the same concerns as you on the side effects.
@hurtsalot Thank you John for inviting me to join My body can't take high doses and so Dr put me on 100 mg at night It did help alot with the discomfort of neuropathy but the side effects made me stop After a week my mind was doing strange things but everyone is different The normal dose is 300 mg which I couldn't take but there is other doses if you can't take this ,you,ll just have to work with your Dr. @ be your on advocate ,you know your body better then anyone.Good luck
My Physical Therapist just suggested electronic stimulation - she will email me more info about it. She said it helps some people like me who have the burning type of sensory neuropathy and doesn't help people with other kinds of neuropathy. I will look into it. BTW -- Gabapentin helps me and doesn't seem to cause any side affects at this time. Peggy
I'm exited for the possibility of electronic stimulation helping you Peggy. I have CMT with PN as a by-product and tried acupuncture for 3 years without much relief in my leg numbness and tingling but do not have leg pain like you so I hope that the electronic stimulation provides you some relief. I also take Gabapentin, 100mg 3X/day and find it helpful for pain and sleep.
This is my first post about P/N which I've experienced for 15 years starting at age 65. It progressed from my feet up to my thighs and it is felt in other upper regions of my body - even my face. My Internist prescribed Gabapentin 100 mg but the side effects are off putting (dizziness) so I have NOT started this medication due to being semi-ambulatory and already have poor equilibrium, therefore I don't want to add side effects which will further increase disequilibrium. My question: I request others who have taken Gabapentin to offer their experience with this drug and how it may (or not) have helped ameliorate the discomforting symptoms of neuropathy. My thanks for any information.
@hurtsalot Good evening and welcome. @johnbishop has asked me to share my gabapentin experience with you. As he mentioned, it does a good job of subduing the tingling and needlelike conditions in the hands and feet. At first, my neurologist wanted me to have a 300 mg tablet in the am and then 2 more an hour before bedtime. I happened to take all 3 of them one morning by mistake and so I experienced the dizziness. As a partner in this process, I sought a solution to the side effect. Because I am a medical cannabis user, I substituted a 2:1 CBD/THC tincture in the morning and again in the afternoon. I then took all 3 tablets of the gabapentin at night. At first, there was some disorientation but I learned to settle down for bedtime and I slept well. I also noticed that my body adjusted to the medication within a few weeks and the disorientation disappeared.
One side effect that does occur is dry mouth. There are OTC mouthwashes and sprays to help with that. I also carry a Contigo with ice water everywhere I go. Having it at the bedside for those times you wake up with cotton mouth is highly recommended. So...start slowly with one 300mg tablet. After a month, add a second one and then if necessary an additional 300 mg one month later. That cautious process really makes you feel more secure and gives your body time to adjust to the medication. Good luck and please keep posting to let us know how it is working. May you be free of suffering and have a lovely evening......Chris
@hurtsalot Good evening and welcome. @johnbishop has asked me to share my gabapentin experience with you. As he mentioned, it does a good job of subduing the tingling and needlelike conditions in the hands and feet. At first, my neurologist wanted me to have a 300 mg tablet in the am and then 2 more an hour before bedtime. I happened to take all 3 of them one morning by mistake and so I experienced the dizziness. As a partner in this process, I sought a solution to the side effect. Because I am a medical cannabis user, I substituted a 2:1 CBD/THC tincture in the morning and again in the afternoon. I then took all 3 tablets of the gabapentin at night. At first, there was some disorientation but I learned to settle down for bedtime and I slept well. I also noticed that my body adjusted to the medication within a few weeks and the disorientation disappeared.
One side effect that does occur is dry mouth. There are OTC mouthwashes and sprays to help with that. I also carry a Contigo with ice water everywhere I go. Having it at the bedside for those times you wake up with cotton mouth is highly recommended. So...start slowly with one 300mg tablet. After a month, add a second one and then if necessary an additional 300 mg one month later. That cautious process really makes you feel more secure and gives your body time to adjust to the medication. Good luck and please keep posting to let us know how it is working. May you be free of suffering and have a lovely evening......Chris
@artscaping@hurtsalot
On the other end of the spectrum, I was prescribed 100 mg capsules of gabapentin for my chemo-induced PN. I tried one and was unable to drive the next day due to extreme brain fog. I pulled apart the capsules and tried to take half the next day, and then a third the day after that... without success. I simply felt unsafe driving even in residential neighborhoods. I then was prescribed venlafaxine. I thought I was doing okay with that until I found myself driving about 40 mph on the freeway... totally oblivious to my (lack of) speed.
Alter a few more unsuccessful prescriptions, I knew that I had to find a non-pharmaceutical. Palmitoylethanolamide (PEA) was the answer for me. European neurologists have been using it successfully for a long time for neuropathic pain from numerous pathologies. It now is catching on the U.S. and has no known side effects of any kind. After the first three weeks, I began sleeping through the night for the first time in ages. I generally take one 400 mg capsule in the morning and one at night... occasionally one at midday if I have a flare-up.
@artscaping
Yes... I buy it on Amazon (Ergomax OptiPEA and PEACure). Be careful about buying anything which is not ultramicronized or which has B6 added to it.
In one trial, they gave up to 2,000 mg to those with chemo-induced neuropathy. (I take ap. 400 mg. twice, sometimes three times a day which works for me.) I found relief in about 3 weeks. You're going to have to figure out what dosage works best for you. Take too much, and you're just wasting money. Too little, and you aren't going to get relief from the pain. Even my PCP is taking it now because there are no side effects to interfere with his practice.
@hurtsalot
Welcome! @johnbishop asked that I tell you about my experience(s) with Gabapentin.
I have been on the medication for a few years.
Frankly, I really don't know if it helps me or not.
I take so many different meds for a variety of ailments.
I can tell you, however, that my brother, who has issues related to spinal problems, says that he finds it very helpful.
He does not take it on a regular basis; he takes it usually at night when he has a problem sleeping due to pain.
Sorry I cannot be of more help.
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Hi @hurtsalot, welcome to Connect. Thank you for sharing. I only took gabapentin for a few weeks when I found out it only helps with the pain and does nothing for the numbness so I stopped taking it. I have idiopathic small fiber peripheral neuropathy which I've had for 20+ years but only got it diagnosed a few years ago. I only have numbness with my neuropathy. I would have the same concerns as you on the side effects.
I'm tagging @artscaping, @lioness and @grandmar who may be able to share their experience with gabapentin.
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2 Reactions@hurtsalot Thank you John for inviting me to join My body can't take high doses and so Dr put me on 100 mg at night It did help alot with the discomfort of neuropathy but the side effects made me stop After a week my mind was doing strange things but everyone is different The normal dose is 300 mg which I couldn't take but there is other doses if you can't take this ,you,ll just have to work with your Dr. @ be your on advocate ,you know your body better then anyone.Good luck
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1 ReactionMy Physical Therapist just suggested electronic stimulation - she will email me more info about it. She said it helps some people like me who have the burning type of sensory neuropathy and doesn't help people with other kinds of neuropathy. I will look into it. BTW -- Gabapentin helps me and doesn't seem to cause any side affects at this time. Peggy
I'm exited for the possibility of electronic stimulation helping you Peggy. I have CMT with PN as a by-product and tried acupuncture for 3 years without much relief in my leg numbness and tingling but do not have leg pain like you so I hope that the electronic stimulation provides you some relief. I also take Gabapentin, 100mg 3X/day and find it helpful for pain and sleep.
@hurtsalot Good evening and welcome. @johnbishop has asked me to share my gabapentin experience with you. As he mentioned, it does a good job of subduing the tingling and needlelike conditions in the hands and feet. At first, my neurologist wanted me to have a 300 mg tablet in the am and then 2 more an hour before bedtime. I happened to take all 3 of them one morning by mistake and so I experienced the dizziness. As a partner in this process, I sought a solution to the side effect. Because I am a medical cannabis user, I substituted a 2:1 CBD/THC tincture in the morning and again in the afternoon. I then took all 3 tablets of the gabapentin at night. At first, there was some disorientation but I learned to settle down for bedtime and I slept well. I also noticed that my body adjusted to the medication within a few weeks and the disorientation disappeared.
One side effect that does occur is dry mouth. There are OTC mouthwashes and sprays to help with that. I also carry a Contigo with ice water everywhere I go. Having it at the bedside for those times you wake up with cotton mouth is highly recommended. So...start slowly with one 300mg tablet. After a month, add a second one and then if necessary an additional 300 mg one month later. That cautious process really makes you feel more secure and gives your body time to adjust to the medication. Good luck and please keep posting to let us know how it is working. May you be free of suffering and have a lovely evening......Chris
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1 ReactionThank you for providing this detailed and thoughtful advice for us - ! Peggy
@artscaping @hurtsalot
On the other end of the spectrum, I was prescribed 100 mg capsules of gabapentin for my chemo-induced PN. I tried one and was unable to drive the next day due to extreme brain fog. I pulled apart the capsules and tried to take half the next day, and then a third the day after that... without success. I simply felt unsafe driving even in residential neighborhoods. I then was prescribed venlafaxine. I thought I was doing okay with that until I found myself driving about 40 mph on the freeway... totally oblivious to my (lack of) speed.
Alter a few more unsuccessful prescriptions, I knew that I had to find a non-pharmaceutical. Palmitoylethanolamide (PEA) was the answer for me. European neurologists have been using it successfully for a long time for neuropathic pain from numerous pathologies. It now is catching on the U.S. and has no known side effects of any kind. After the first three weeks, I began sleeping through the night for the first time in ages. I generally take one 400 mg capsule in the morning and one at night... occasionally one at midday if I have a flare-up.
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2 Reactions@elizm, Thank you for posting about what was for me, a new idea. The organization is in the Netherlands. Is it also available in the US?
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1 Reaction@artscaping
Yes... I buy it on Amazon (Ergomax OptiPEA and PEACure). Be careful about buying anything which is not ultramicronized or which has B6 added to it.
In one trial, they gave up to 2,000 mg to those with chemo-induced neuropathy. (I take ap. 400 mg. twice, sometimes three times a day which works for me.) I found relief in about 3 weeks. You're going to have to figure out what dosage works best for you. Take too much, and you're just wasting money. Too little, and you aren't going to get relief from the pain. Even my PCP is taking it now because there are no side effects to interfere with his practice.
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3 Reactions@hurtsalot
Welcome!
@johnbishop asked that I tell you about my experience(s) with Gabapentin.
I have been on the medication for a few years.
Frankly, I really don't know if it helps me or not.
I take so many different meds for a variety of ailments.
I can tell you, however, that my brother, who has issues related to spinal problems, says that he finds it very helpful.
He does not take it on a regular basis; he takes it usually at night when he has a problem sleeping due to pain.
Sorry I cannot be of more help.
Good luck!
Ronnie (GRANDMAr)
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