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Old 07-04-2011, 06:40 AM   #1
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Neuropathy Medications

I am wanting your input on how the neuropthy medication/treatment plans prescribed by your physician/neurologist have improved your quality of life. Are these really working for you? Do you only require medication with flare ups? How often are your flare ups? What home remedies/comfort items seem to help the most?
Or does the biggest comfort come from having a diagnosis and confirming to yourself that it is not all just a bad dream?
Thanks for any feedback you can share!

 
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Old 07-05-2011, 10:33 AM   #2
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Re: Neuropathy Medications

Quote:
Originally Posted by WorkingDad View Post
I am wanting your input on how the neuropthy medication/treatment plans prescribed by your physician/neurologist have improved your quality of life. Are these really working for you? Do you only require medication with flare ups? How often are your flare ups? What home remedies/comfort items seem to help the most?
Or does the biggest comfort come from having a diagnosis and confirming to yourself that it is not all just a bad dream?
Thanks for any feedback you can share!
I'm currently taking 3600mg of Neurontin but have a new script for Lyrica(which I used to take until old ins stopped paying for) and will be switching to when I talk w/my doctor about how to ween myself off the Neurontin...

As far as quality of life...I think it helps...I try and enjoy every day...I'm happy to be able to get out of bed and work..knowing the odds are high at some point PN will be too much for me to be able to get to work daily.

My flair ups are NOT a party or for those that can't step up...I had a HUGE issue on Friday late afternoon at work...for some ODD reason the 3rd toe on my left foot was causing me to be in awful pain...I'd compare it to when I got my DVT in my leg...I was driving home yelling to myself "OUCH"!!!!! ...got home and still w/the pain coming and going...no clue why....Kath asked if I should take anything and didn't want to...I'd just taken my 1200mg of Neurontin at 3p..only thing I could have taken was a perc and HATE taking "pain" pills...so sucked it up...around 8p the pain went back to normal pain not the throbbing pain I did have.

My PN is more of a nightmare! But one I have to live with and hope my day is my normal bad and not awful.

Know there are many out here w/your "type" of issues and you are NOT alone.

Hope this helps and you have a great day.
J

 
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Old 07-06-2011, 03:52 PM   #3
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Re: Neuropathy Medications

Quote:
Originally Posted by WorkingDad View Post
I am wanting your input on how the neuropthy medication/treatment plans prescribed by your physician/neurologist have improved your quality of life. Are these really working for you? Do you only require medication with flare ups? How often are your flare ups? What home remedies/comfort items seem to help the most?
Or does the biggest comfort come from having a diagnosis and confirming to yourself that it is not all just a bad dream?
Thanks for any feedback you can share!
I'm sorry you are dealing with this bad dream. I developed this following surgery to repair a tendon in my foot. Neurontin has helped with the quality of life. Unfortunately, I started on a dose of 300 mg twice a day in October of 2010 and am up to four, sometimes five doses a day. I HATE taking pills, so this is not something I do lightly, but to help me function and sleep. It's best to take it on a daily regimen to keep it in your system. I would like to take it only when I have flare ups, but that's not the best use for it. I have had some success with a homeopathic gel called Neuragen - you can get it at Walgreens. Hope this helps

 
Old 07-06-2011, 04:37 PM   #4
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Re: Neuropathy Medications

Quote:
Originally Posted by RisingParrot View Post
I'm currently taking 3600mg of Neurontin but have a new script for Lyrica(which I used to take until old ins stopped paying for) and will be switching to when I talk w/my doctor about how to ween myself off the Neurontin...

As far as quality of life...I think it helps...I try and enjoy every day...I'm happy to be able to get out of bed and work..knowing the odds are high at some point PN will be too much for me to be able to get to work daily.

My flair ups are NOT a party or for those that can't step up...I had a HUGE issue on Friday late afternoon at work...for some ODD reason the 3rd toe on my left foot was causing me to be in awful pain...I'd compare it to when I got my DVT in my leg...I was driving home yelling to myself "OUCH"!!!!! ...got home and still w/the pain coming and going...no clue why....Kath asked if I should take anything and didn't want to...I'd just taken my 1200mg of Neurontin at 3p..only thing I could have taken was a perc and HATE taking "pain" pills...so sucked it up...around 8p the pain went back to normal pain not the throbbing pain I did have.

My PN is more of a nightmare! But one I have to live with and hope my day is my normal bad and not awful.

Know there are many out here w/your "type" of issues and you are NOT alone.

Hope this helps and you have a great day.
J
Thanks for sharing. Obviosly I am at the beginning of a long journey and am very unsure of what information I am even looking for. I really appreciate you being so candid on this issue.

 
Old 07-06-2011, 04:42 PM   #5
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Re: Neuropathy Medications

Quote:
Originally Posted by jeancady View Post
I'm sorry you are dealing with this bad dream. I developed this following surgery to repair a tendon in my foot. Neurontin has helped with the quality of life. Unfortunately, I started on a dose of 300 mg twice a day in October of 2010 and am up to four, sometimes five doses a day. I HATE taking pills, so this is not something I do lightly, but to help me function and sleep. It's best to take it on a daily regimen to keep it in your system. I would like to take it only when I have flare ups, but that's not the best use for it. I have had some success with a homeopathic gel called Neuragen - you can get it at Walgreens. Hope this helps
Thank you for opening my eyes to the fact that it is possible to develop neuropathy as a result of a surgery. I had no idea this was possible.

Did you have any side effects associated with the Neurontin? Do you care to share some of your earlier symtons?

Thanks again for the response.

 
Old 07-06-2011, 05:03 PM   #6
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Re: Neuropathy Medications

Quote:
Originally Posted by WorkingDad View Post
Thanks for sharing. Obviosly I am at the beginning of a long journey and am very unsure of what information I am even looking for. I really appreciate you being so candid on this issue.
Funny you say that...I have a friend w/Fibro and we were chatting on FB and someone said they were shocked we were talking so open w/our issues and others could see it....doesn't bother me a bit..can't hide it and won't...I have to deal w/it and I'm not ashamed about it...it is how it is..I have PN..it kicks my butt on a daily basis and I try to live the best life I can...some days will be awful but if I can try and not let it totally kick my butt and get along as best I can then I'm winning.

as far as "comfort items" to help my PN...I use a foam wedge to use between my legs when i sleep....I have a shower chair due to my lack of balance..which really helps me feel safe...and my best buddy is my walking stick I got from REI...helps me and helps others realize I have walking issue...

Hope that helps...keep in touch and hope you have the best day you can.
J

Last edited by RisingParrot; 07-06-2011 at 05:04 PM.

 
Old 07-06-2011, 05:14 PM   #7
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Re: Neuropathy Medications

Quote:
Originally Posted by RisingParrot View Post
Funny you say that...I have a friend w/Fibro and we were chatting on FB and someone said they were shocked we were talking so open w/our issues and others could see it....doesn't bother me a bit..can't hide it and won't...I have to deal w/it and I'm not ashamed about it...it is how it is..I have PN..it kicks my butt on a daily basis and I try to live the best life I can...some days will be awful but if I can try and not let it totally kick my butt and get along as best I can then I'm winning.

as far as "comfort items" to help my PN...I use a foam wedge to use between my legs when i sleep....I have a shower chair due to my lack of balance..which really helps me feel safe...and my best buddy is my walking stick I got from REI...helps me and helps others realize I have walking issue...

Hope that helps...keep in touch and hope you have the best day you can.
J
Hey, thanks for the insight! I need to start shopping around for what may work best for me.

I know what you mean about 'it is how it is'. I try to live each day to it's fullest no matter how badly I feel. I joke, play practical jokes on my friends and smile a lot. It's not that I am not in pain or the fact I am going on very little sleep, it's because that's just who I am. Don't get me wrong, I am exhausted at the end of each day. Work hard, Play hard!

 
Old 07-07-2011, 08:29 AM   #8
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Re: Neuropathy Medications

Quote:
Originally Posted by WorkingDad View Post
Hey, thanks for the insight! I need to start shopping around for what may work best for me.

I know what you mean about 'it is how it is'. I try to live each day to it's fullest no matter how badly I feel. I joke, play practical jokes on my friends and smile a lot. It's not that I am not in pain or the fact I am going on very little sleep, it's because that's just who I am. Don't get me wrong, I am exhausted at the end of each day. Work hard, Play hard!
Kath got my wedge in the RX Section of a large grocery store...shouldn't be hard to find and it wasn't expensive.

Great way to live life....we HAVE to try and make it though each day and make the most of it....I personally have to at least..if not I'll be an angry/mad/not nice to be around person...I took my first 1200mg of Neurontin about an hour ago...hoping I can move a little better/less pain anytime now

Still waiting to hear from my doctor about how to ween myself off the Neurontin and switch to Lyrica...really wanting to start this!!!

Hope you have a great day.
J

 
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Old 07-07-2011, 02:32 PM   #9
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Re: Neuropathy Medications

Quote:
Originally Posted by WorkingDad View Post
I am wanting your input on how the neuropthy medication/treatment plans prescribed by your physician/neurologist have improved your quality of life. Are these really working for you? Do you only require medication with flare ups? How often are your flare ups? What home remedies/comfort items seem to help the most?
Or does the biggest comfort come from having a diagnosis and confirming to yourself that it is not all just a bad dream?
Thanks for any feedback you can share!
Hi WorkingDad, I'm sorry you're going through this. It's not a fun journey as you are learning.

I've been dealing with SFN for about the past 3 yrs. I'm 44 & otherwise healthy. Mine is idiopathic, meaning they can't figure out what's caused it. That's frustrating, but at least I do finally have a name for what I'm experiencing.

I've been on a number of different medications. Like RisingParrot, I was on a very high dose of gabapentin. I'm currently on Lyrica & find that i'm getting approximately the same results as I did with the gabapentin but with much less dosage. I take 150 mg of the Lyrica.

I also take Cymbalta & vicodin. Nothing I've been on truly takes the pain away, but it does help. The vicodin helps the most, but I worry about becoming addicted to it.

I use a lot of lotion on my feet b/c they are so dry now. That helps stop some of the discomfort. I also use ice packs when the burning gets too bad.

I've found that over the counter Capzasin, which is use for arthritis. This seems to help as well.

I wish you well & hope you find some relief from your pain.

 
Old 07-08-2011, 06:20 AM   #10
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Re: Neuropathy Medications

I am on Lyrica twice a day and if I forget, I certainly feel it, so yes, I cant do without it!

 
Old 07-09-2011, 08:10 AM   #11
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Re: Neuropathy Medications

Quote:
Originally Posted by MichG View Post
I am on Lyrica twice a day and if I forget, I certainly feel it, so yes, I cant do without it!
Lyrica seems to be the drug of choice from what I am hearing so far.
Thanks for the input!

 
Old 07-09-2011, 08:19 AM   #12
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Re: Neuropathy Medications

Quote:
Originally Posted by Ihate2w8 View Post
Hi WorkingDad, I'm sorry you're going through this. It's not a fun journey as you are learning.

I've been dealing with SFN for about the past 3 yrs. I'm 44 & otherwise healthy. Mine is idiopathic, meaning they can't figure out what's caused it. That's frustrating, but at least I do finally have a name for what I'm experiencing.

I've been on a number of different medications. Like RisingParrot, I was on a very high dose of gabapentin. I'm currently on Lyrica & find that i'm getting approximately the same results as I did with the gabapentin but with much less dosage. I take 150 mg of the Lyrica.

I also take Cymbalta & vicodin. Nothing I've been on truly takes the pain away, but it does help. The vicodin helps the most, but I worry about becoming addicted to it.

I use a lot of lotion on my feet b/c they are so dry now. That helps stop some of the discomfort. I also use ice packs when the burning gets too bad.

I've found that over the counter Capzasin, which is use for arthritis. This seems to help as well.

I wish you well & hope you find some relief from your pain.
Wow, another brave soul on here fighting this battle!

I did have a steroid shot of kenalog for my psoriasis well over a month ago. It cleared up any/all skin imperfections almost overnite. It actually helped my dry skin issues as well.

Thanks for sharing!

 
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