1. < Neuropathy

Lyrica - Looking for Patient Experiences

Posted by iceblue @iceblue, Mar 12, 2020

I saw my doctor today, and was reminded again how lucky I was to (recently) land on his patient list. The visit was all about the side effects I had recently developed with Gabapentin - prescribed to treat SFN. He was quite concerned, and has switched me over to Lyrica effective immediately. I've done some research and it appears to have a shorter list of side effects, but I would be interested to know what people's actual experiences were/are - both good and bad.

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tigreyes2004 | @tigreyes2004 | Mar 13, 2020
In reply to @helennicola "iceblue, please keep us posted, I, would like to know how well it compares to gabapentin..." + (show)
@helennicola

iceblue, please keep us posted, I, would like to know how well it compares to gabapentin and if the side effects are less. I would love to have the pain relief without the side effects. Thanks and good luck. Helen

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I take 500 mg of Gabapentin & I do the same thing with sentences. I forget what I am about to say & I have to think about it & I feel like a fool. I'm on a very low dose of Gabapentin. My dr. says this pill slows the brain down so I guess that is why we react like that. I would like to know more too so keep us posted. Best of luck.

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2 replies
iceblue | @iceblue | Mar 13, 2020
In reply to @tigreyes2004 "I take 500 mg of Gabapentin & I do the same thing with sentences. I forget..." + (show)
@tigreyes2004

I take 500 mg of Gabapentin & I do the same thing with sentences. I forget what I am about to say & I have to think about it & I feel like a fool. I'm on a very low dose of Gabapentin. My dr. says this pill slows the brain down so I guess that is why we react like that. I would like to know more too so keep us posted. Best of luck.

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@tigreyes2004 - I can't even say I've become forgetful because that would be an understatement. The day I realized I had forgotten about one of the lap quilts I had made only a few weeks before - that was the day that totally freaked me out. How does one forget that they made a lap quilt? A VIBRANT lap quilt!!! I know I was grieving - but even with grief that was over the top. There are many other examples, but that was the one that I found most disconcerting. I'm hoping Lyrica allows my brain to more fully function while still reducing the pain. Perhaps an impossible request....

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Jane | @darlingtondoll | Mar 13, 2020
In reply to @tigreyes2004 "I take 500 mg of Gabapentin & I do the same thing with sentences. I forget..." + (show)
@tigreyes2004

I take 500 mg of Gabapentin & I do the same thing with sentences. I forget what I am about to say & I have to think about it & I feel like a fool. I'm on a very low dose of Gabapentin. My dr. says this pill slows the brain down so I guess that is why we react like that. I would like to know more too so keep us posted. Best of luck.

Jump to this post

Thank you for your post. I have been a bit forgetful but I usually attribute it to my advanced age. Maybe the high doses of gabapentin are the root cause. I usually remember my conversations but when it comes to remembering a person’s name, it takes me a minute or two and sometimes I can only remember the surname. Hmmm.... I need the gabapentin more than I need my memory of everyone’s name. But maybe it is more the drug and not early dementia that is causing my problem.

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Mentor
Rachel, Volunteer Mentor | @rwinney | Mar 13, 2020
In reply to @iceblue "DAY ONE UPDATE: I took my first 50 mg pill last night at 9 PM -..." + (show)
@iceblue

DAY ONE UPDATE: I took my first 50 mg pill last night at 9 PM - so it's been barely 12 hours.

I did not get tired enough to go to bed until midnight. I slept better than I have been sleeping on the Gabapentin - which means no nightmares, no sense of doom, no anxiety attacks. There was also no pain throughout the night (yipppeeee!). I still woke up 2 or 3 times, but didn't have to talk myself into a sense of calm.

The most amazing thing was that when I got up this morning, I was able to walk without feeling like my feet were riddled with arthritis! I got out of bed and walked - not painfully hobbled - to the bathroom! I honestly don't know whether this type of pain is neuropathy, arthritis, or something else - all I know is that I didn't feel it this morning and if this drug takes away that pain - BONUS.

I still have some burning pain this morning - but if things are still going well on Day 3, the doctor wants me to increase my dosage by 25 mg (total 75 mg) and see how that goes. I will see him again in 2 weeks for a review.

I realize this may be a one-off experience, but I cannot tell you how excited I am at this early stage! I'm looking forward to seeing whether this will extend over the longer term 🙂

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Yayyy for you @iceblue! 😊 Fingers crossed.

REPLY
helennicola | @helennicola | Mar 13, 2020
In reply to @iceblue "DAY ONE UPDATE: I took my first 50 mg pill last night at 9 PM -..." + (show)
@iceblue

DAY ONE UPDATE: I took my first 50 mg pill last night at 9 PM - so it's been barely 12 hours.

I did not get tired enough to go to bed until midnight. I slept better than I have been sleeping on the Gabapentin - which means no nightmares, no sense of doom, no anxiety attacks. There was also no pain throughout the night (yipppeeee!). I still woke up 2 or 3 times, but didn't have to talk myself into a sense of calm.

The most amazing thing was that when I got up this morning, I was able to walk without feeling like my feet were riddled with arthritis! I got out of bed and walked - not painfully hobbled - to the bathroom! I honestly don't know whether this type of pain is neuropathy, arthritis, or something else - all I know is that I didn't feel it this morning and if this drug takes away that pain - BONUS.

I still have some burning pain this morning - but if things are still going well on Day 3, the doctor wants me to increase my dosage by 25 mg (total 75 mg) and see how that goes. I will see him again in 2 weeks for a review.

I realize this may be a one-off experience, but I cannot tell you how excited I am at this early stage! I'm looking forward to seeing whether this will extend over the longer term 🙂

Jump to this post

that is great news Iceblue, for now I think I will continue the gaba, but good to know your positive experience w/Lyrica. I take it at 9:30 and usually turn the lights out at 11:30. I do experience crazy sometimes bad dreams and often anxiety plus forgetfulness and off/on blurry vision, impatience and lack of energy. But, on 400mg. 1xday at bedtime I can hold off taking it again until bedtime and I sometimes use a CBD salve on my hands before bed. For some reason I have very little pain during the day. Fingers crossed for both of us. Helen

REPLY
1 reply
iceblue | @iceblue | Mar 13, 2020
In reply to @helennicola "that is great news Iceblue, for now I think I will continue the gaba, but good..." + (show)
@helennicola

that is great news Iceblue, for now I think I will continue the gaba, but good to know your positive experience w/Lyrica. I take it at 9:30 and usually turn the lights out at 11:30. I do experience crazy sometimes bad dreams and often anxiety plus forgetfulness and off/on blurry vision, impatience and lack of energy. But, on 400mg. 1xday at bedtime I can hold off taking it again until bedtime and I sometimes use a CBD salve on my hands before bed. For some reason I have very little pain during the day. Fingers crossed for both of us. Helen

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@helennicola - While I am really pleased with these results, I will wait and see if the good results continue before I get too excited 😉

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dckuke | @dckuke | Mar 14, 2020

Even at high doses, GABA had no noticeable effect and Cymbalta caused serious memory problems. Lyrica helps greatly. If I am late taking it, I suffer—no exaggeration. With numb feet and Lyrica, I do feel dizzy often. This gives very good relief when taken with my Tramadol. I have tried several pain meds that almost completely eliminated pain, but as you would expect, they were much more dangerous and addicting. Despite daily pain and some rough ones, I am trying to stay at this level of relief. Lyrica makes that possible.

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3 replies
helennicola | @helennicola | Mar 14, 2020
In reply to @dckuke "Even at high doses, GABA had no noticeable effect and Cymbalta caused serious memory problems. Lyrica..." + (show)
@dckuke

Even at high doses, GABA had no noticeable effect and Cymbalta caused serious memory problems. Lyrica helps greatly. If I am late taking it, I suffer—no exaggeration. With numb feet and Lyrica, I do feel dizzy often. This gives very good relief when taken with my Tramadol. I have tried several pain meds that almost completely eliminated pain, but as you would expect, they were much more dangerous and addicting. Despite daily pain and some rough ones, I am trying to stay at this level of relief. Lyrica makes that possible.

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@dcduke, glad something works somewhat for you. Have you tried CBD at all? Gabapentin caused dizziness and vertigo (not the same) for me for a year in which I was seeing a P/T specialist. It stopped on its own and have not had it come back so far. Other side effects have come and gone over time, now just dealing with the SFN.

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1 reply
resawaller | @resawaller | Mar 14, 2020
In reply to @dckuke "Even at high doses, GABA had no noticeable effect and Cymbalta caused serious memory problems. Lyrica..." + (show)
@dckuke

Even at high doses, GABA had no noticeable effect and Cymbalta caused serious memory problems. Lyrica helps greatly. If I am late taking it, I suffer—no exaggeration. With numb feet and Lyrica, I do feel dizzy often. This gives very good relief when taken with my Tramadol. I have tried several pain meds that almost completely eliminated pain, but as you would expect, they were much more dangerous and addicting. Despite daily pain and some rough ones, I am trying to stay at this level of relief. Lyrica makes that possible.

Jump to this post

I have been on lyrica for 3 years and I swear by it ! Nothing ealse has worked for me, as you know the pain never completely goes away,but taken lyrica has saved my life and I was able to go back to work full time!, me and my husband are raising our 9 yr old grandson, and if I hadn't went back to work we would've lost our house and been homeless! Thank you God and my doctor for lyrica! Amen!

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dckuke | @dckuke | Mar 14, 2020
In reply to @helennicola "@dcduke, glad something works somewhat for you. Have you tried CBD at all? Gabapentin caused dizziness..." + (show)
@helennicola

@dcduke, glad something works somewhat for you. Have you tried CBD at all? Gabapentin caused dizziness and vertigo (not the same) for me for a year in which I was seeing a P/T specialist. It stopped on its own and have not had it come back so far. Other side effects have come and gone over time, now just dealing with the SFN.

Jump to this post

Yes, CBD helps me cope with pain. I take CBD sublingually--one type fast action and longer lasts longer. I have the awful pricking, burning sometimes in fingers, thighs to toes, and. the only thing I have found that helps Is CBD ointment. I have tried several brands, but they often add herbs that irritate the skin. I have settled on Mitchell's Ointment, which stops the worst of the burning almost immediately and last 6 hours or more. One tip. Try to put on a couple hours before socks and shoes--cuts down some friction. If you are not as sensitive I recommend Lazarus Ointment that is cheaper and 50% more CBD--and you may qualify for discounts. Good Luck.

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