Neuropathy Medications

Posted by sunnyflower @sunnyflower, Aug 28 10:35pm

Hello, read this artical from the FDA dated January 30th, 2020, about dangers of Gabapentin, Lyrica and other drugs. I thought it worthy of our attention : https://www.fda.gov/drugs/drug-safety-and-availability/fda-warns-about-serious-breathing-problems-seizure-and-nerve-pain-medicines-gabapentin-neurontin
Warmest regards, Sunnyflower 🙏

Sry for misspelling article. It's the Gabapentin that makes me forget to edit. 😉

Liked by lorirenee1

REPLY

Hi Sunny, it’s unfortunate that most all drugs can have negative side effects. I don’t know why pharma can’t develop drugs without them. I think this type of article serves as a warning as to possible side effects, there are not many articles which tout the benefits. Luckily I, and a couple of friends who suffer from neuropathy have had the benefit of pain relief. I did experience some side effects initially with gabapentin which went away after a few weeks. For us, there really is no better alternative.

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@helennicola

Hi Sunny, it’s unfortunate that most all drugs can have negative side effects. I don’t know why pharma can’t develop drugs without them. I think this type of article serves as a warning as to possible side effects, there are not many articles which tout the benefits. Luckily I, and a couple of friends who suffer from neuropathy have had the benefit of pain relief. I did experience some side effects initially with gabapentin which went away after a few weeks. For us, there really is no better alternative.

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I have been off the Gabapentin wagon for years,noticed my brain had a bit of misfires. Dr just upped my next attempt to get some relief,using Wellbutrin up to 450mg,high dose I know. Only been a few days of this dose,been on 150mg 2 x a day with no change in mood or burn. I tend to get disinterested in people,places and things,maybe because I think my feet will burst into flames and hurt people. But alas it doesn't escape or show any signs of of external fires! Take Care everyone i need your thoughts to assure myself I'm not alone out here.

Liked by lorirenee1, HankB

REPLY

You are definitely not alone So sorry you are not getting relief. My neurologist calls my pain that started about a month after my stroke (June 2018), Central Pain Syndrome
It’s like there’s a line dividing the left and right sides of my body The left is non stop burning, tingling, numbness in parts and pretty intense. my 7 year old grandson just asked if it’s like when people put those buzzers in your hand on April Fool’s Day and shake your hand to shock you…. except it’s all the time top to bottom. I thought that was a pretty brilliant description
Neurologist has tried multiple meds.. including gabapentin, Lyrica, many more… to no avail
Also tried acupuncture, all kinds of therapy.
My internist suggested medical marijuana.
Haven’t checked it out yet. My best relief is reading; I get lost in the story for a bit.

REPLY
@helennicola

Hi Sunny, it’s unfortunate that most all drugs can have negative side effects. I don’t know why pharma can’t develop drugs without them. I think this type of article serves as a warning as to possible side effects, there are not many articles which tout the benefits. Luckily I, and a couple of friends who suffer from neuropathy have had the benefit of pain relief. I did experience some side effects initially with gabapentin which went away after a few weeks. For us, there really is no better alternative.

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Hi Helennicola, thanks for you reply. I'm so glad to hear the Gabapentin is helping you and that your side – effects have subsided.

This drug helps dull my pain but the side-effects are HUGE! I hate them! And I'm only on 800 mg. /day!

Take good care, Sunny 🙏😊

Liked by lorirenee1

REPLY
@notborntoburn

I have been off the Gabapentin wagon for years,noticed my brain had a bit of misfires. Dr just upped my next attempt to get some relief,using Wellbutrin up to 450mg,high dose I know. Only been a few days of this dose,been on 150mg 2 x a day with no change in mood or burn. I tend to get disinterested in people,places and things,maybe because I think my feet will burst into flames and hurt people. But alas it doesn't escape or show any signs of of external fires! Take Care everyone i need your thoughts to assure myself I'm not alone out here.

Jump to this post

@notborntoburn

You are surely not alone. None of us is born to burn. But a lot of us "feel the burn", just not the burn that comes from hard exercise.

I spent more than 3 years trying one antidepressant after another until I got to Wellbutrin. I've been taking it at 450mg since 2006, and it's made my life – well, I can't come up with the right word. The experts say, "depression is treatable". I wonder sometimes how they define treatable. Does it mean that at some point a depressed person stops being depressed because they find the right medication? Or do they no longer need an antidepressant? I'd say that the outcome is very much unique to every person.

I'm okay with the possibility that I'll need antidepressants the rest of my life to maintain mental stability. I don't forget what untreated depression felt like, and I don't particularly want to go back there.

A few years ago I was beginning to feel depressed again, so I talked with the psychiatrist about it, and he added Mirtazapine to my cache of medications. I guess Wellbutrin needed a booster. It did get me back on track.

Another way treatable is looked at is a combination of medication and therapy, which is the treatment plan that I follow. Statistics show that that's the most effective way to treat depression.

Then in around 2012 I started feeling pins and needles in my feet and legs. Tests showed that I have peripheral neuropathy and by now I have burning pain in my feet and ankles. I've tried a really long list of medications for it, but nothing has helped for very long. I had a spinal cord stimulator implant in June of 2017, and gave me 80% pain relief. I'd forgotten how it felt not to be in awful pain. It did the job for a year or so, but was starting to lose its effectiveness, and had to be adjusted every 3 months. Right now, I don't feel like it's doing anything, but I learned a few months ago that I have severe spinal stenosis in L4-L5. I'm scheduled for surgery in late September, and the surgeon tells me that it could give me some relief, but I won't know until I recover from surgery.

So, welcome to the club.

Jim

REPLY
@jimhd

@notborntoburn

You are surely not alone. None of us is born to burn. But a lot of us "feel the burn", just not the burn that comes from hard exercise.

I spent more than 3 years trying one antidepressant after another until I got to Wellbutrin. I've been taking it at 450mg since 2006, and it's made my life – well, I can't come up with the right word. The experts say, "depression is treatable". I wonder sometimes how they define treatable. Does it mean that at some point a depressed person stops being depressed because they find the right medication? Or do they no longer need an antidepressant? I'd say that the outcome is very much unique to every person.

I'm okay with the possibility that I'll need antidepressants the rest of my life to maintain mental stability. I don't forget what untreated depression felt like, and I don't particularly want to go back there.

A few years ago I was beginning to feel depressed again, so I talked with the psychiatrist about it, and he added Mirtazapine to my cache of medications. I guess Wellbutrin needed a booster. It did get me back on track.

Another way treatable is looked at is a combination of medication and therapy, which is the treatment plan that I follow. Statistics show that that's the most effective way to treat depression.

Then in around 2012 I started feeling pins and needles in my feet and legs. Tests showed that I have peripheral neuropathy and by now I have burning pain in my feet and ankles. I've tried a really long list of medications for it, but nothing has helped for very long. I had a spinal cord stimulator implant in June of 2017, and gave me 80% pain relief. I'd forgotten how it felt not to be in awful pain. It did the job for a year or so, but was starting to lose its effectiveness, and had to be adjusted every 3 months. Right now, I don't feel like it's doing anything, but I learned a few months ago that I have severe spinal stenosis in L4-L5. I'm scheduled for surgery in late September, and the surgeon tells me that it could give me some relief, but I won't know until I recover from surgery.

So, welcome to the club.

Jim

Jump to this post

@jimhd So if they say the optimum way to treat depression is a combo of drugs and therapy that implies a depression that is a combo of physical and psychological, is that accurate? So if you did not have the physical depression I wonder if you would still have the psychological, i.e. still require the therapy. Just curious.

I know I have had the psychological variety, which lasted about 30 years or so I guess. I never had any therapy, just lived with it and it was AWFUL. By the time I was in my thirties I had decided to myself that it was an imbalance in my 2 personalities, i.e. the "twins" of being a gemini. The reason that idea came to me was that I was clearly aware of my mood swings, cycling between being pretty happy and okay, to being severely unhappy and having much self-loathing. A very dysfunctional way to live but I did it a long time and kind of got by. When I would have the bad swings I would become very melancholy. My wife noticed how when I would choose to take what we now call a "mental health day" from work I would often choose to take a rainy day off. I used to love the rain, it really blended with my mood. But I was not manic depressive. I have seen what manic depression looks like first hand and I was never that extreme and I always had a grip on reality. But I was a sad guy.

The way I worked out of it was through a lot of "self therapy". That is a discussion for another time because it would take a while to explain. But I think I finally left the last dregs of the depression behind when I was about 55, although the biggest parts of it were dismantled when I was about, maybe, 35-ish. It was a wonderful experience to leave that all behind, let me tell you!

Jim, I am glad you have managed to stabilize your depression. Mine was probably not as bad as yours, or at least I was not suicidal except that one period in my twenties (and as a kid I thought about it periodically). Best, Hank

REPLY
@irishnanny3

You are definitely not alone So sorry you are not getting relief. My neurologist calls my pain that started about a month after my stroke (June 2018), Central Pain Syndrome
It’s like there’s a line dividing the left and right sides of my body The left is non stop burning, tingling, numbness in parts and pretty intense. my 7 year old grandson just asked if it’s like when people put those buzzers in your hand on April Fool’s Day and shake your hand to shock you…. except it’s all the time top to bottom. I thought that was a pretty brilliant description
Neurologist has tried multiple meds.. including gabapentin, Lyrica, many more… to no avail
Also tried acupuncture, all kinds of therapy.
My internist suggested medical marijuana.
Haven’t checked it out yet. My best relief is reading; I get lost in the story for a bit.

Jump to this post

@irishnanny3 Hi there. I take Lyrica (not sure it really helps), Norco (hydrocodone) 5mg and because that is not enough for relief and I dont want a higher opioid dose, I use medical marijuana by tincture. Oil under tongue. It treats my pain different from an opiod. If I rotate the 2 I get the best relief I can. Unfortunately, some days are so atrocious I'm still in pain regardless of both. Those are the days I rest and dont use my body…limbs, hands, etc… Heat and ice are saviors to me and bring comfort to inflamed areas. If MM is legal in your state, I'd listen to your internist and give it a try. Much hope is wished for you.
Rachel

REPLY
@jesfactsmon

@jimhd So if they say the optimum way to treat depression is a combo of drugs and therapy that implies a depression that is a combo of physical and psychological, is that accurate? So if you did not have the physical depression I wonder if you would still have the psychological, i.e. still require the therapy. Just curious.

I know I have had the psychological variety, which lasted about 30 years or so I guess. I never had any therapy, just lived with it and it was AWFUL. By the time I was in my thirties I had decided to myself that it was an imbalance in my 2 personalities, i.e. the "twins" of being a gemini. The reason that idea came to me was that I was clearly aware of my mood swings, cycling between being pretty happy and okay, to being severely unhappy and having much self-loathing. A very dysfunctional way to live but I did it a long time and kind of got by. When I would have the bad swings I would become very melancholy. My wife noticed how when I would choose to take what we now call a "mental health day" from work I would often choose to take a rainy day off. I used to love the rain, it really blended with my mood. But I was not manic depressive. I have seen what manic depression looks like first hand and I was never that extreme and I always had a grip on reality. But I was a sad guy.

The way I worked out of it was through a lot of "self therapy". That is a discussion for another time because it would take a while to explain. But I think I finally left the last dregs of the depression behind when I was about 55, although the biggest parts of it were dismantled when I was about, maybe, 35-ish. It was a wonderful experience to leave that all behind, let me tell you!

Jim, I am glad you have managed to stabilize your depression. Mine was probably not as bad as yours, or at least I was not suicidal except that one period in my twenties (and as a kid I thought about it periodically). Best, Hank

Jump to this post

@jesfactsmon I am in way too much pain right now to write much, but Hank, I am so glad you managed to work your way out of depression. You really had a long, painful journey, and now live your life to help so many. I love you, sweet man. Feel well. Gotta go. Feet are a mess. Lori Renee

REPLY
@rwinney

@irishnanny3 Hi there. I take Lyrica (not sure it really helps), Norco (hydrocodone) 5mg and because that is not enough for relief and I dont want a higher opioid dose, I use medical marijuana by tincture. Oil under tongue. It treats my pain different from an opiod. If I rotate the 2 I get the best relief I can. Unfortunately, some days are so atrocious I'm still in pain regardless of both. Those are the days I rest and dont use my body…limbs, hands, etc… Heat and ice are saviors to me and bring comfort to inflamed areas. If MM is legal in your state, I'd listen to your internist and give it a try. Much hope is wished for you.
Rachel

Jump to this post

@rwinney Rachel you are a brave soul. I'm not sure how you manage to cope. I am glad you have a methodology for taking the Norco at a lower dose along with the MM. Pretty smart of you to come up with that. I'll tell you, it hurts my heart to know what you are suffering, and yet you are SUCH A TROOPER! Are you still able to take a walk once in a while, maybe a little like you did when you went to the woods? I hope your legs are still feeling a bit stronger than they did last year. I don't want to get maudlin on you, but tears welled up when I read how "some days are atrocious". Linda had a few of those this last week. Hope you get stronger and have a fantastic day my friend! 😘 Best, Hank

REPLY
@lorirenee1

@jesfactsmon I am in way too much pain right now to write much, but Hank, I am so glad you managed to work your way out of depression. You really had a long, painful journey, and now live your life to help so many. I love you, sweet man. Feel well. Gotta go. Feet are a mess. Lori Renee

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@lorirenee1 You are so sweet Lori! And I think I am the one who is being helped here on Connect. What great therapy, and free to boot!

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@jesfactsmon

@rwinney Rachel you are a brave soul. I'm not sure how you manage to cope. I am glad you have a methodology for taking the Norco at a lower dose along with the MM. Pretty smart of you to come up with that. I'll tell you, it hurts my heart to know what you are suffering, and yet you are SUCH A TROOPER! Are you still able to take a walk once in a while, maybe a little like you did when you went to the woods? I hope your legs are still feeling a bit stronger than they did last year. I don't want to get maudlin on you, but tears welled up when I read how "some days are atrocious". Linda had a few of those this last week. Hope you get stronger and have a fantastic day my friend! 😘 Best, Hank

Jump to this post

@jesfactsmon Hank – Yes, I continue to walk as best I can. Some days it isn't worth the pain. The unpredictability of how this disease affects my body is dumbfounding. If I have a couple of calmer days in my legs, then my shoulders, back, arms, hands flare. My legs have days of aching only, and I consider that a win. Walking for me remains a slow, several stops to break, challenge. At best I walk a block and back. Some days are easier than others but, never normal. My legs by all means feel better than last year! I continue to walk and excercise them so hopefully they never get that bad again. Last year, at that time, I was nursing back my B12 levels and that is what I believe is the difference of this year. My legs still have varying degrees of weakness, heaviness, burning, tightness, calf and quad pain, cramping, twitching or aching. Things may come and go by the day, or take weeks to come back. Some things never leave but, flare to varying degrees. The unpredictability makes it hard because I am a hopeful person and if I ever get a day or back to back days of betterment, I secretly think maybe I'm finally healing or am in some kind of remission. Then I'm reminded otherwise. But, maybe it's about a month of feeling better, or a year. Cant put parameters on hope. Thank you for your warmth and concern.
Wishing you and Linda well.
Rachel

REPLY
@rwinney

@irishnanny3 Hi there. I take Lyrica (not sure it really helps), Norco (hydrocodone) 5mg and because that is not enough for relief and I dont want a higher opioid dose, I use medical marijuana by tincture. Oil under tongue. It treats my pain different from an opiod. If I rotate the 2 I get the best relief I can. Unfortunately, some days are so atrocious I'm still in pain regardless of both. Those are the days I rest and dont use my body…limbs, hands, etc… Heat and ice are saviors to me and bring comfort to inflamed areas. If MM is legal in your state, I'd listen to your internist and give it a try. Much hope is wished for you.
Rachel

Jump to this post

Hi and thanks for your helpful response
The Lyrica made me disoriented.. thought I was having another stroke. Called my oncologist
( treated my NonHodgkins Lymphoma and now my Polycythemia Vera) and he told me it’s not an uncommon side effect of the Lyrica and to stop it
No problems since
I’m making appt with dr who can prescribe the
med marijuana this week
None of my doctors, including my neurologist can prescribe it. Then I have to apply for a card from the state (NJ) before I can fill the prescription. Hope it doesn’t take too long
I hope you get relief and wish I had some special
magic formula to share with you

REPLY
@irishnanny3

Hi and thanks for your helpful response
The Lyrica made me disoriented.. thought I was having another stroke. Called my oncologist
( treated my NonHodgkins Lymphoma and now my Polycythemia Vera) and he told me it’s not an uncommon side effect of the Lyrica and to stop it
No problems since
I’m making appt with dr who can prescribe the
med marijuana this week
None of my doctors, including my neurologist can prescribe it. Then I have to apply for a card from the state (NJ) before I can fill the prescription. Hope it doesn’t take too long
I hope you get relief and wish I had some special
magic formula to share with you

Jump to this post

Awww, that's sweet @irishnanny3, thank you. Same goes for me…neither my neurologist nor my pain management Dr could prescribe so my general practitioner referred me to a prescribing Dr to get certified in NY. It was fairly simple and quick but, a little costly. About $250 for the Dr. and another $250 for the license. Then the product cost which you can shop for sales and may get a new customer discount. I will be interested in your experience, if you care to share. Good luck!
Rachel

Liked by lorirenee1

REPLY
@rwinney

Awww, that's sweet @irishnanny3, thank you. Same goes for me…neither my neurologist nor my pain management Dr could prescribe so my general practitioner referred me to a prescribing Dr to get certified in NY. It was fairly simple and quick but, a little costly. About $250 for the Dr. and another $250 for the license. Then the product cost which you can shop for sales and may get a new customer discount. I will be interested in your experience, if you care to share. Good luck!
Rachel

Jump to this post

Thanks for the info. I’m going in blind, but anxious to see how it goes
I’ll keep you posted

Liked by rwinney

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