Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

Thank you for providing this detailed and thoughtful advice for us – ! Peggy

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@artscaping

@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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@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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@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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@artscaping

@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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@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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@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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@elizm

@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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@elizm, Thank you for sharing your experience with PEA. Thanks for also pointing out to avoid versions of the product with B6 added as I also worry about B6 toxicity adding to neuropathy. I wasn't familiar with it and found an interesting article on it's use.

Therapeutic utility of palmitoylethanolamide in the treatment of neuropathic pain associated with various pathological conditions: a case series
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3500919/

Liked by steeldove

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I'm interested in 'chemically induced' neuropathy … I had a 'nuclear heart test' not long before I started having neuropathy. It's supposed to be an improvement over the treadmill test but it was brutal and terrifying – they put chemicals into my body to kind of induce a heart attack, they listened to me yelling and watched my body jerk around for 5 minutes, then gave me chemicals to cancel out the first chemicals. Could the chemicals have caused the neuropathy?

Liked by grandmaR

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@pfbacon

I'm interested in 'chemically induced' neuropathy … I had a 'nuclear heart test' not long before I started having neuropathy. It's supposed to be an improvement over the treadmill test but it was brutal and terrifying – they put chemicals into my body to kind of induce a heart attack, they listened to me yelling and watched my body jerk around for 5 minutes, then gave me chemicals to cancel out the first chemicals. Could the chemicals have caused the neuropathy?

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Oh my goodness! This was startling to read. I would imagine that the chemicals could have started the neuropathy. How much after the heart test did the neuropathy start? My neuropathy started 3 weeks after cancer radiation. You can't tell me there is no connection. I wouldn't believe it. Many things doctors do not acknowledge or tell you!!!!! Lori Renee

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@pfbacon and @lorirenee1, while it might have caused the neuropathy I'm not sure I would make that statement without specifically knowing which drugs were used with the treatment. I think you have to balance the treatment alternatives with the risks. Neuropathy is definitely not fun but neither is possibility of getting worse due to not being treated. I would definitely have a discussion with my doctor about the neuropathy risks involved.

Foundation for Peripheral Neuropathy – Medications that can cause peripheral neuropathy (PDF)
https://www.foundationforpn.org/wp-content/uploads/2016/10/Medications-that-Can-Cause-Peripheral-Neuropathy.pdf

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@pfbacon

I'm interested in 'chemically induced' neuropathy … I had a 'nuclear heart test' not long before I started having neuropathy. It's supposed to be an improvement over the treadmill test but it was brutal and terrifying – they put chemicals into my body to kind of induce a heart attack, they listened to me yelling and watched my body jerk around for 5 minutes, then gave me chemicals to cancel out the first chemicals. Could the chemicals have caused the neuropathy?

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@pfbacon Oh my that's awful After my back fracture I couldn't do a treadwell test so Ive had 3 now chemical nuclear test never did my body go into convulsing as you stated My cardiologist induced me for this not a tech. I never heard of this happening 😭 so sorry

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@pfbacon

I'm interested in 'chemically induced' neuropathy … I had a 'nuclear heart test' not long before I started having neuropathy. It's supposed to be an improvement over the treadmill test but it was brutal and terrifying – they put chemicals into my body to kind of induce a heart attack, they listened to me yelling and watched my body jerk around for 5 minutes, then gave me chemicals to cancel out the first chemicals. Could the chemicals have caused the neuropathy?

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@pfbacon
I am so sorry to hear about your experience during your nuclear stress test.
I cannot address what happened regarding neuropathy, but I'd like to address the chemical reactions, just in case you ever need another one.
I've had a couple of nuclear stress tests.
The first time I had it, it was done in much the same way yours was.
The chemicals made you feel like you were having a heart attack.
Leaving you go for so long, however, should NOT have happened.
The 2nd one was a very DIFFERENT experience!!!
They now use a chemical that DOES NOT cause the feeling of having a heart attack.
I was nervous about having the test after my first experience.
However, my son and daughter in law are both nuclear med techs and they were the ones who told me about the new chemicals.
Should you need another one, make sure the place you goes uses the chemicals that DO NOT USE THE OLD CHEMICALS.

Good luck!
Ronnie (GRANDMAr)

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This is MY PERSONAL opinion regarding chemicals, surgeries, etc. and neuropathy.
When anything is put into our bodies (for good or bad), it causes a difference.
Doctors can ONLY tell us what the USUAL impact can be from data they read.
That being said, we all know that each of us is a different being with different reactions, what we can tolerate and the neuances (spelling?) within our bodies.
Yes, that can be frustrating when it is US who is having these issues.
So I believe that it is possible that chemo can have an impact, that surgery can have an impact, etc.
Again, this is MY PERSONAL opinion.
I am not nor have I ever been in the medical field.
This just seems to make sense to me.

Ronnie (GRANDMAr)

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@johnbishop

@pfbacon and @lorirenee1, while it might have caused the neuropathy I'm not sure I would make that statement without specifically knowing which drugs were used with the treatment. I think you have to balance the treatment alternatives with the risks. Neuropathy is definitely not fun but neither is possibility of getting worse due to not being treated. I would definitely have a discussion with my doctor about the neuropathy risks involved.

Foundation for Peripheral Neuropathy – Medications that can cause peripheral neuropathy (PDF)
https://www.foundationforpn.org/wp-content/uploads/2016/10/Medications-that-Can-Cause-Peripheral-Neuropathy.pdf

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That is absolutely true, John. It is just so upsetting to read horrible things that may have triggered neuropathy. I got just so upset!!!! But you are SO right!

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I currently take 2700mg a day of gabapentin. It helps with my nueropathy episodes which come on without warning. Prior to taking the medicine my episodes would last up to an hour or so, now they last maybe 10 to 15 minutes. So for me the medicene has helped. My biggest side affect is being tired, but I was not getting any sleep before so being tired seems like a normal conditionl to me. I don't like taking any kind of medication, but severe pain and cramping from Nueropathy aren't much fun either. For me it is worth it for now, time will tell if I continue at this pace, but I do know this, when I want to cut my foot off from Nueropathy pain, I am glad it is available to me to cut the edge off, be well all.

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My Neuropathy came on after 2 strokes and does not hit any one part of my body. I am now taking 2-300mg Gabapentin twice a day. I have taken 5 a day but went back to the 4 because of the dizziness side effect. With the exception of once, my pain usually hits me when I'm alone. Which means no one knows, but me, about the pain.

Yes, I have no idea when I will have pain, where, or for how long. The pain that concerns me the most is the chest pain. I have had a blood clot in my right leg (I'm on meds for it) for years. I figure that if I can take a deep breath and it does not hurt I am okay, that is as long as the pain does not last more than a few minutes. I have discussed with my doctor and he feels I am doing the right thing. IF I can relax while I am having any pain I have found it goes away faster. Sure, just try to relax when you are in pain.

When I have pain and cramping in my foot or leg I am glad I'm still using a walker to grab onto or I could have fallen. I'm using the walker less so I don't know what will happen when I don't have it near.

Is there anyone out there who has Neuropathy pain from a stroke or two? I would like to talk with you to compare notes.
Marion

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