Neuropathy Medications

Posted by sunnyflower @sunnyflower, Aug 28, 2020

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 🙏

Interested in more discussions like this? Go to the Neuropathy group.

@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

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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

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@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

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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

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@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

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

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@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

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@jesfactsmon

I started a note last night, but had to stop for some reason, and didn't get back until now.

But I think I'll go to a different, more appropriate group, because it doesn't relate to neuropathy medication. I'm not sure where, but somewhere in the mental health group. I don't mind if everyone in this group reads it, but it's moving pretty far from the reason for this conversation.

Jim

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@jimhd

@jesfactsmon

I started a note last night, but had to stop for some reason, and didn't get back until now.

But I think I'll go to a different, more appropriate group, because it doesn't relate to neuropathy medication. I'm not sure where, but somewhere in the mental health group. I don't mind if everyone in this group reads it, but it's moving pretty far from the reason for this conversation.

Jim

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@jimhd I'll look for it Jim, thanks.

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@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

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@jesfactsmon The first psychiatrist I saw gave me the overall label of Major Depressive Disorder, as well as Depressive Bipolar and Atypical Depression. My highs would probably be classified as mild depression by normal people. The two are quite similar.

I've been rating my days on a scale of 1 to 10 at the recommendation of the staff where I self-admitted during my actively suicidal period, 10 being the best day of my life. 4 is preparing to die, I'm not sure how to label 1-3, 5 suicide is somewhat intrusive, 6 it's at the back of my mind, a good day.

I was at 4 for 7 or 8 years, and finally got up to 5 some time after 2010. I thought I'd never reach 6, but I did a few years ago, and I kind of migrate between 5 and 6 now. It's been 5 for a month. My therapist and I have conversations about it, but we don't think I'm at the level where I'm not safe, but I sure do think about it a lot. Life gets too complicated and then overwhelming. I've concluded that 6 is my new 9.

I wrote a rather lengthy message in the depression and anxiety group, responding to a person's recent post, Is depression permanent? I almost always seem to require a lot of sentences to express my thoughts. I should have been asleep long ago because I have to take the car to the shop – again – as early as I can.

Jim

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@jimhd

@jesfactsmon The first psychiatrist I saw gave me the overall label of Major Depressive Disorder, as well as Depressive Bipolar and Atypical Depression. My highs would probably be classified as mild depression by normal people. The two are quite similar.

I've been rating my days on a scale of 1 to 10 at the recommendation of the staff where I self-admitted during my actively suicidal period, 10 being the best day of my life. 4 is preparing to die, I'm not sure how to label 1-3, 5 suicide is somewhat intrusive, 6 it's at the back of my mind, a good day.

I was at 4 for 7 or 8 years, and finally got up to 5 some time after 2010. I thought I'd never reach 6, but I did a few years ago, and I kind of migrate between 5 and 6 now. It's been 5 for a month. My therapist and I have conversations about it, but we don't think I'm at the level where I'm not safe, but I sure do think about it a lot. Life gets too complicated and then overwhelming. I've concluded that 6 is my new 9.

I wrote a rather lengthy message in the depression and anxiety group, responding to a person's recent post, Is depression permanent? I almost always seem to require a lot of sentences to express my thoughts. I should have been asleep long ago because I have to take the car to the shop – again – as early as I can.

Jim

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@jimhd Ugh, I hope this doesn't mean you won't get to bed until after the car appt. I do know you are kind of a night owl. I get up between 2 and 2:30 am central time and you are often one of the few posting in the neuropathy discussions when I hop onto Connect usually by 3am or so. I responded to your post over in the depression discussion. Your descriptions so far of what you live with are pretty mind boggling to me. I will leave any further responses to you about this over on that other discussion. I really appreciate you Jim for being so open. I have come to appreciate you more generally as well. It's truly amazing how much fondness one develops for others here. Best, Hank

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@rwinney

@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

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@rwinney Rachel I just sent you a private message. Hank

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@rwinney

@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

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@jesfactsmon @rwinney First, Hank, I am glad I help you too!! I get sick of myself and my pain terribly. If I can get out of my sickness, and help you, then I am happy. Rachel, I was just thinking about you and if you are still managing to walk better. I have read your post, and marvel how strange the human body and spirit really are. You did all that walking on your get away, and now, are not able to again. I understand this totally, as I see the unpredictability of Neuropathy, totally. It kills me that you have trouble in so many places, and yet you have this flicker of hope that seems to shine most of the time. Two nights ago, I watched TV for hours, pain free. Last night, the pain was excruciating, even with the DRG. I do not begin to understand and do not even try to figure things out anymore. I think that as humans, we want to be in control, but there is no control with Neuropathy. I control only myself, and walk daily, and do specific foot exercises. I am exhausted still from surgery. I try to do my best, and that is all I can do. The Neuropathy is stronger than me. I just try to distract myself, and cry when the tears come. I am so sorry your ability to walk has lessoned. I think maybe you had this huge adrenal rush because you wanted to walk so very much on your vacation. Kind of a fight or flight reaction. Hank, I am glad that this Forum helps you. I do think you need all of us, as you have your burdens at home. Love to you both, Lori

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@jesfactsmon

@jimhd Ugh, I hope this doesn't mean you won't get to bed until after the car appt. I do know you are kind of a night owl. I get up between 2 and 2:30 am central time and you are often one of the few posting in the neuropathy discussions when I hop onto Connect usually by 3am or so. I responded to your post over in the depression discussion. Your descriptions so far of what you live with are pretty mind boggling to me. I will leave any further responses to you about this over on that other discussion. I really appreciate you Jim for being so open. I have come to appreciate you more generally as well. It's truly amazing how much fondness one develops for others here. Best, Hank

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@jimhd @jesfactsmon Guys, your frankness about your depression has helped me very much. Jim, your eloquence in describing yourself just blows me away. I have a history of OCD, and I know severe depression. I had years when I could not control my repetition of thought processes, and some were utterly senseless. OCD can make for very odd thoughts that do not want to leave, and it can be torture to have. Oddly though, I never thought I was basically a depressed person. I thought I had a brain that didn't work right, and a good psychiatrist taught me the ways in which it didn't. Now, due to the Neuropathy, I have entered more of a pure depression, not OCD. It feels very different. Now, my depression is due to pain beyond my pain threshold tolerance. And Jim, I hover at a 5, very often. Sometimes, even a 4. Very frightening. I loved life before sickness, and I keep hoping that my pain will improve. Who knows. Lori Renee

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@lorirenee1

@jesfactsmon @rwinney First, Hank, I am glad I help you too!! I get sick of myself and my pain terribly. If I can get out of my sickness, and help you, then I am happy. Rachel, I was just thinking about you and if you are still managing to walk better. I have read your post, and marvel how strange the human body and spirit really are. You did all that walking on your get away, and now, are not able to again. I understand this totally, as I see the unpredictability of Neuropathy, totally. It kills me that you have trouble in so many places, and yet you have this flicker of hope that seems to shine most of the time. Two nights ago, I watched TV for hours, pain free. Last night, the pain was excruciating, even with the DRG. I do not begin to understand and do not even try to figure things out anymore. I think that as humans, we want to be in control, but there is no control with Neuropathy. I control only myself, and walk daily, and do specific foot exercises. I am exhausted still from surgery. I try to do my best, and that is all I can do. The Neuropathy is stronger than me. I just try to distract myself, and cry when the tears come. I am so sorry your ability to walk has lessoned. I think maybe you had this huge adrenal rush because you wanted to walk so very much on your vacation. Kind of a fight or flight reaction. Hank, I am glad that this Forum helps you. I do think you need all of us, as you have your burdens at home. Love to you both, Lori

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@lorirenee1 You nailed it Lori Renee! I could do that nature trail again if at the right moment, on the right day. Adrenaline is huge as well as distraction, as you and I both know. The unpredictability and lack of consistency makes me/us crazy. I'm happy you had a couple of free hours pain free. That is a rejuvenation and exactly what you needed. I totally get it and live it with you and others who read these posts. Neuropathy is getting the better of me lately and I hate every bit of that feeling. I'll keep working to try and defy this disease but, admittedly so, its friggin exhausting. My best to you Lori. Thanks for your words. XO
Rachel

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Thanks for sharing. The pain is unbearable which is depressing me more and I am already classified as a manic depressive and extreme anxiety. How can I get help with the pain?

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