What do I do now?

Posted by cecelia19 @cecelia19, Oct 1 9:54pm

I just saw someone post about the bad side of Gabapentin but it is the only thing that is helping with my pain, taking 300mg 3x/day. I am in pure panic mode again and don’t know where to turn. Someone help me with something positive. Anything. I don’t know how or if I can go on. I saw a psychologist today to help me how to cope with the prospect of a lifetime of pain but she wasn’t much help. It isn’t her fault, I don’t think anything can help me. I am so sorry for sounding so down but I am truly struggling and don’t know where to turn.

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

@bjk3

Hello, @bettyg81pain ,
When I started taking prescription pain medication about 3 years ago, I was prescribed Gabapentin. I don't remember the dosage but after 2 days I was so depressed that when I called my doctor, I was told to immediately discontinue its use. As an alternative I was prescribed Lyrica (Pregabalin) 100 mg. 3 x day along with Tramadol 50 mg. 3x a day, which I have continued to this day. The only side effect I have experienced is some lightheadedness in the morning if I don't eat something.
It does take care of my foot pain, thankfully ~ but I still have numbing and my sense of balance has never been restored. I'm so grateful for this combination of meds. and for my pain doctor.

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Thank you for sharing what has worked for you. I’m going to run this by a neurologist that I am getting a second opinion on this week. I’m experiencing terrible depression which I can’t seem to get out from under. Does the Lyrica give you any brain fog or a feeling of being in an altered state?

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I take Lyrica 200mg twice a day and it certainly helps with pain I used to take a lot of gabapentin but definitely prefer Lyrica . Yes I get tired so I take a nap.
I stopped drinking any alcohol 18 months ago that has stopped the burning at nighttime. I don’t know what else to do and am waiting for an apt at Mayo has anybody gone to Mayo for a 2 nd opinion. Judy

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@judephi

I take Lyrica 200mg twice a day and it certainly helps with pain I used to take a lot of gabapentin but definitely prefer Lyrica . Yes I get tired so I take a nap.
I stopped drinking any alcohol 18 months ago that has stopped the burning at nighttime. I don’t know what else to do and am waiting for an apt at Mayo has anybody gone to Mayo for a 2 nd opinion. Judy

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Welcome Judy @judephi, I was diagnosed at Rochester Mayo but I don't have any pain with my neuropathy, only the numbness and some tingling. I also stopped drinking alcohol after doing a little research on neuropathy. I don't think small amounts make a difference but for me I was more worried about further progression and wanted to avoid anything that has a possibility of making the neuropathy worse.

The only suggestion I have is to learn as much as you can about neuropathy while you wait for the appointment and also write down any questions you have so that you can discuss them at your upcoming appointment. Here are 2 of the sites I've found helpful for learning more about neuropathy:
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
-- Foundation for Peripheral Neurpathy: https://www.foundationforpn.org/

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@johnbishop

Welcome Judy @judephi, I was diagnosed at Rochester Mayo but I don't have any pain with my neuropathy, only the numbness and some tingling. I also stopped drinking alcohol after doing a little research on neuropathy. I don't think small amounts make a difference but for me I was more worried about further progression and wanted to avoid anything that has a possibility of making the neuropathy worse.

The only suggestion I have is to learn as much as you can about neuropathy while you wait for the appointment and also write down any questions you have so that you can discuss them at your upcoming appointment. Here are 2 of the sites I've found helpful for learning more about neuropathy:
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
-- Foundation for Peripheral Neurpathy: https://www.foundationforpn.org/

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Can you tell me how you went about getting seen at Mayo? I’ve been there almost a dozen other times for family members needing cancer treatment and we get in right away. Five years ago when my neuropathy started and was very localized I tried to get in and they rejected me saying they didn’t do anything differently to treat PN, meaning the anti-epileptics.

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@cecelia19

Thank you for sharing what has worked for you. I’m going to run this by a neurologist that I am getting a second opinion on this week. I’m experiencing terrible depression which I can’t seem to get out from under. Does the Lyrica give you any brain fog or a feeling of being in an altered state?

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Hi @cecelia19 ~
Well, I have not figured that out. Could be, or it could be the Tramadol (a controlled substance) or either of these along with the 3 b.pressure meds, thyroid, & statin meds that I take daily. It is not something that I notice much and doesn't alter the way I live. Also, I'm 77 and age might play into it. I've never been 77 before! 😉

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@cecelia19

Can you tell me how you went about getting seen at Mayo? I’ve been there almost a dozen other times for family members needing cancer treatment and we get in right away. Five years ago when my neuropathy started and was very localized I tried to get in and they rejected me saying they didn’t do anything differently to treat PN, meaning the anti-epileptics.

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I had not been diagnosed with neuropathy or nerve damage prior to my appointment. I had a referral from my local Mayo Family Health Clinic to see a neurologist. They confirmed I had neuropathy and sadly got the same answers that my primary care had told me over the years - no medications available that are for treating numbness symptoms which is what I have. I'm one of the 20% or so of folks with neuropathy that do not have the pain or burning symptoms just numbness and some tingling. Which is why I came to Connect looking for answers myself. There really is no magic bullet cure for neuropathy and there are many different people out there selling dubious treatments which is why we have to do our own research.

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@bjk3

Hi @cecelia19 ~
Well, I have not figured that out. Could be, or it could be the Tramadol (a controlled substance) or either of these along with the 3 b.pressure meds, thyroid, & statin meds that I take daily. It is not something that I notice much and doesn't alter the way I live. Also, I'm 77 and age might play into it. I've never been 77 before! 😉

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I will be joining you at 77 in a couple of weeks. The older we get, the better we were! LOL/

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After reading these posts I have to remind everyone again that LDN - low dose naltrexone works for pain that we have discussed often on this forum.
I’ve had severe pain from neuropathy since 2008 & finally discovered LDN almost two years ago & I have reduced my pain about 80% since starting it. I reduced Lyrica from 400mg to 100mg & sometimes don’t need it all.
Learn more here:
https://ldnresearchtrust.org/conditions
https://www.drugs.com/medical-answers/low-dose-naltrexone-ldn-3570335/

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@bjk3

Hi @cecelia19 ~
Well, I have not figured that out. Could be, or it could be the Tramadol (a controlled substance) or either of these along with the 3 b.pressure meds, thyroid, & statin meds that I take daily. It is not something that I notice much and doesn't alter the way I live. Also, I'm 77 and age might play into it. I've never been 77 before! 😉

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Are you saying that there is still some uncomfortable sensations but you are able to ignore them as you said you don’t notice it much?

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@johnbishop

I had not been diagnosed with neuropathy or nerve damage prior to my appointment. I had a referral from my local Mayo Family Health Clinic to see a neurologist. They confirmed I had neuropathy and sadly got the same answers that my primary care had told me over the years - no medications available that are for treating numbness symptoms which is what I have. I'm one of the 20% or so of folks with neuropathy that do not have the pain or burning symptoms just numbness and some tingling. Which is why I came to Connect looking for answers myself. There really is no magic bullet cure for neuropathy and there are many different people out there selling dubious treatments which is why we have to do our own research.

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Hi to fellow 20%er! My neuropathy goes from feet to hips. Occasional brief electrical snap but no pain. Just total numbness and tingling and feel like I have super tight bands squeezing all day! Like really heavy tight socks and pants. Makes for uncomfortable sleeping at night! It’s so frustrating to know there’s nothing to reverse it but so grateful to not have the pain that so many experience. ❤️

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