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Old 08-07-2015, 09:39 AM #1
Patrick Winter Patrick Winter is offline
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Originally Posted by LMPinkereton View Post
Patrick,
I had exactly the same experience you had with Lyrica, but I'm getting desperate. Yes, I was a zombie. No, I can't just vegg out. And yes, I didn't feel it was not safe for me to drive.

Guess there aren't any other options that would allow a person to live any type of "normal" life. Seems like anything that helps pain puts us in a zombie state, which is just awful.

Thanks for the input.
I have found that the supplements can be helpful at at least reducing the pain level. Most notably R-Lipoic, B-12 and ALCAR. R-Lipoic must be taken in a fasting state. I personally take 300mgs of R-Lipoic a day and have pretty good response. There are also clinical trials that show it may actually help heal the nerves. I also have found that you just have to simply avoid white carbs, sugar and pretty much anything that spikes blood sugar because it will stimulate the nerves and you don't want that. i have lost 50 pounds as a result in the past 8 months. I actually have gotten a bit too thin for my liking but I have had all blood work done and doctors are saying stay with whatever i am doing. I still take a 300mg gabapentin at night becuase by 9 or 10 PM the burning starts to kick in. I would prefer to not be taking it though, hope i can get there at some point.
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Old 08-07-2015, 12:56 PM #2
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Originally Posted by Patrick Winter View Post
I have found that the supplements can be helpful at at least reducing the pain level. Most notably R-Lipoic, B-12 and ALCAR. R-Lipoic must be taken in a fasting state. I personally take 300mgs of R-Lipoic a day and have pretty good response. There are also clinical trials that show it may actually help heal the nerves. I also have found that you just have to simply avoid white carbs, sugar and pretty much anything that spikes blood sugar because it will stimulate the nerves and you don't want that. i have lost 50 pounds as a result in the past 8 months. I actually have gotten a bit too thin for my liking but I have had all blood work done and doctors are saying stay with whatever i am doing. I still take a 300mg gabapentin at night becuase by 9 or 10 PM the burning starts to kick in. I would prefer to not be taking it though, hope i can get there at some point.
I read these forums daily, but rarely post. I really appreciate the feedback. As I said, I'm getting desperate.

Regretfully, I tried antidepressants for about a year. They helped (very) slightly (in that I slept better), but on the other hand I just sat around all day and didn't care about doing anything all at. So I stopped them.

Several years ago, I did the no sugar, supplements, lost 30 lbs, etc. and after 9 months, I felt worse, so I stopped that too. None of my labs showed any improvement either.

I have resigned myself to the fact that I'll never be able to do anything again. What ever I have to do to get through the day I do, even if it means staying in bed for several days in a row.
Just chimed in here in hopes of something new for the pain.

(Wish people would try to understand how this disease works, instead of my having to explain myself at every turn.)

Thanks
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Old 08-07-2015, 03:09 PM #3
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Originally Posted by LMPinkereton View Post
I read these forums daily, but rarely post. I really appreciate the feedback. As I said, I'm getting desperate.

Regretfully, I tried antidepressants for about a year. They helped (very) slightly (in that I slept better), but on the other hand I just sat around all day and didn't care about doing anything all at. So I stopped them.

Several years ago, I did the no sugar, supplements, lost 30 lbs, etc. and after 9 months, I felt worse, so I stopped that too. None of my labs showed any improvement either.

I have resigned myself to the fact that I'll never be able to do anything again. What ever I have to do to get through the day I do, even if it means staying in bed for several days in a row.
Just chimed in here in hopes of something new for the pain.

(Wish people would try to understand how this disease works, instead of my having to explain myself at every turn.)

Thanks

I definitely understand where you're coming from. But, there is the old adage with supplement therapy - it took years to destroy your nerves, it will take at least that much time to help repair them. The medicines arent gonna cure it, at least there are some promising clinical studies that show success from the supplement therapy. In some cases, people arent taking high enough dosages of supplements but its an uncomfortable thing to kind of make yourself a human lab rat. there are a few folks in this forum who have told stories over recovery over time and I find that helpful. Doctors will either tell you nerves cant regrow or that there is no cure. I refuse to accept that. the body wants to heal.

I get very frustrated watching my entire family eat stuff like doritos, ice cream, pizza, cookies, etc. While I have my 4th 2-carb salad in 2 days. But, Something about the brutality of the the vibratory sensation of SFN that has me unwilling to take a chance. Every now and then i actually steal a potato chip chew it in my mouth and spit it out without swallowing. i actually can notice my neuro symptoms get instantly triggered from swallowing as little as 2 or 3 potato chips or a small piece of candy. Tested for diabetes and glucose intolerance and numbers are perfect.But, nerves do not like blood sugar spikes. This is true for all versions of Neuropathy, Fibromyalgia, MS, etc.
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Old 08-09-2015, 02:44 PM #4
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Quote:
Originally Posted by LMPinkereton View Post
I read these forums daily, but rarely post. I really appreciate the feedback. As I said, I'm getting desperate.

Regretfully, I tried antidepressants for about a year. They helped (very) slightly (in that I slept better), but on the other hand I just sat around all day and didn't care about doing anything all at. So I stopped them.

Several years ago, I did the no sugar, supplements, lost 30 lbs, etc. and after 9 months, I felt worse, so I stopped that too. None of my labs showed any improvement either.

I have resigned myself to the fact that I'll never be able to do anything again. What ever I have to do to get through the day I do, even if it means staying in bed for several days in a row.
Just chimed in here in hopes of something new for the pain.

(Wish people would try to understand how this disease works, instead of my having to explain myself at every turn.)

Thanks
I was under the impression that Gabapentin is an antidepressant?
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Old 08-10-2015, 06:50 AM #5
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Default It was actually first developed--

--as an anti-seizure medication (as was Lyrica)--an anti-epileptic, if you will.

Both are designed to upregulate inhibitory neural transmitter levels in order to stop damaging overpropogation of neural impulses, such as happens in seizures, and in situations in which nerves are damaged and can't stop firing, which is why they are used for neuropathy so often.

But certainly, both these drugs act with different mechanisms than the standard anti-depressants, which are designed to keep more of the feel good neurotransmitters at the neural synapses (and/or inhibit the enzymes that break those neurotransmitters down).
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Old 08-10-2015, 12:45 PM #6
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Originally Posted by glenntaj View Post
--as an anti-seizure medication (as was Lyrica)--an anti-epileptic, if you will.

Both are designed to upregulate inhibitory neural transmitter levels in order to stop damaging overpropogation of neural impulses, such as happens in seizures, and in situations in which nerves are damaged and can't stop firing, which is why they are used for neuropathy so often.

But certainly, both these drugs act with different mechanisms than the standard anti-depressants, which are designed to keep more of the feel good neurotransmitters at the neural synapses (and/or inhibit the enzymes that break those neurotransmitters down).
I believe I read that gabapentin was a failed anti depressant. It was found however that it was effective for nerve pain and so began to be prescribed for things it was never intended for.
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Old 08-10-2015, 01:03 PM #7
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Lightbulb

Gabapentin was approved for epilepsy. It is still used to control some types of seizures. It is also approved for shingles pain.
Here is an article listing the off label use of it for other non-approved conditions:
http://www.amcp.org/data/jmcp/Contem...ct-559-568.pdf

It was illegally promoted by sales reps (Pfizer was fined millions for this) to help with Bipolar disorder off label. It failed at this and that situation is over.
Here is an old paper illustrating that:
http://www.ncbi.nlm.nih.gov/pubmed/12781355
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Old 08-10-2015, 02:03 PM #8
Patrick Winter Patrick Winter is offline
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Originally Posted by icelander View Post
I believe I read that gabapentin was a failed anti depressant. It was found however that it was effective for nerve pain and so began to be prescribed for things it was never intended for.
Funny thing is, the clinical studies done on Gabapentin show it's actually not very effective for the majority of people who take it for neuropathy (only 30% success rate in patients who take it). Just goes to show how difficult it is to treat this sickness with any kind of pharma drug. Supplements and dietary changes seem to be just as effective if not more so. Not saying it doesn't have a place for some people but the key word there is "Some". The long term effects of Gabapentin concern me greatly. The other 2 most prescribed options (Lyrica and Cymbalta) are even scarier.
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Old 08-10-2015, 08:32 AM #9
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Heart LMPinkerton, Please Look Into Options

Quote:
Originally Posted by LMPinkereton View Post
I read these forums daily, but rarely post. I really appreciate the feedback. As I said, I'm getting desperate.

Regretfully, I tried antidepressants for about a year. They helped (very) slightly (in that I slept better), but on the other hand I just sat around all day and didn't care about doing anything all at. So I stopped them.

Several years ago, I did the no sugar, supplements, lost 30 lbs, etc. and after 9 months, I felt worse, so I stopped that too. None of my labs showed any improvement either.

I have resigned myself to the fact that I'll never be able to do anything again. What ever I have to do to get through the day I do, even if it means staying in bed for several days in a row.
Just chimed in here in hopes of something new for the pain.

(Wish people would try to understand how this disease works, instead of my having to explain myself at every turn.)

Thanks
Hi LMPinkerton,

I understand your frustration with needing help with pain and finding some options too sedating.

There are often additional options for treating the pain. There are antidepressants, as you've mentioned. There are anti-epileptic meds, too.
There are various types of pain medications as well. There are many approaches to treating pain.

In order to get more help with pain, I had to be very direct and also argued "quality of life." I was met with understanding and cooperation.

Please discuss your options with your doctor.
Your quality of life is very important.


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Old 08-10-2015, 03:36 PM #10
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Default LMPinkerton

Quote:
Originally Posted by LMPinkereton View Post
I read these forums daily, but rarely post. I really appreciate the feedback. As I said, I'm getting desperate.

Regretfully, I tried antidepressants for about a year. They helped (very) slightly (in that I slept better), but on the other hand I just sat around all day and didn't care about doing anything all at. So I stopped them.

Several years ago, I did the no sugar, supplements, lost 30 lbs, etc. and after 9 months, I felt worse, so I stopped that too. None of my labs showed any improvement either.

I have resigned myself to the fact that I'll never be able to do anything again. What ever I have to do to get through the day I do, even if it means staying in bed for several days in a row.
Just chimed in here in hopes of something new for the pain.

(Wish people would try to understand how this disease works, instead of my having to explain myself at every turn.)

Thanks
I am with you - though I am new to these forums. I have been attempting to post, but it seems only my very first post went through. I don't know what I'm doing wrong.
I am with you in that I also have resigned myself to the fact that I'll never be able to do much in my future. I also do whatever I have to in order to get through the day, even if it does mean several doses of pain meds. I am on 600 mg Lyrica a day with no relief but am afraid to stop it for fear that the pain would be even worse. With the numbness now creeping up my legs to my knees, I lie in bed fearing that I will spend what I have left of my life in a wheelchair. It is depressing-especially when I finally came to the realization that I will never get better. Anyway, that's all I have to say....and I hope this actually posts.
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