Quadriplegic & Paraplegic Spinal Cord Injuries: Drug Called Lyrica - Quadriplegic & Paraplegic Spinal Cord Injuries

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#1 User is offline   City Girl 

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Posted 27 March 2008 - 01:25 AM

Has anyone ever tried the drug Lyrica? I suffer from terrible pain during sleep. Even if I stretch and do some relaxing meditation before sleep, I can't seem to get more than 2-3 hours in before I spend the rest of the night tossing and turning, writhing in pain. My body just seizes. I've tried pain killers and muscle relaxers. I have some restricted meds because I am still in recovery but someone suggested Lyrica. It's known to work when other drugs don't. It works on weird things like phantom limb pain, etc. Just wondering if anyone has had any experience with the drug.
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#2 User is offline   Horseman 

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Posted 27 March 2008 - 01:46 AM

Hello City Girl


My wife is on Lyrica, it has worked wonders for her . She is a T7T8 para and has alot of nerve pain mostly in the evenings. The lyrica helps take that pain away. To help make her self comfy at night she uses a cold wet towel across her chest. This seems to calm down the burning at her injury level.
There are side effects to the drug though. Make sure you find out from your doc what they are. The one my wife hates the most is weight gain. lol. Check with your docs about it .


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#3 User is offline   jass1 

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Posted 27 March 2008 - 06:46 AM

I'm on Lyrica it saved my life
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#4 User is offline   Bulky 

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Posted 27 March 2008 - 08:59 AM

Lyrica is awesome. I can function during the day with my neuro pain managed n sleep well at night too!
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#5 User is offline   Trinity 

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Posted 27 March 2008 - 09:20 AM

Lyrica is fabulous, :) I take 200mg twice a day and 50mg of nortriptyline at night, my pain is now completely managable, I still get caught out by it on occasion though! The best thing for me is not feeling in a permanant drugged up state from oxycodone as i have managed to come off it (for now) Lyrica is not for everyone, I'm lucky and don't get any bad side effects but I know for some the side effects can been real issues. However, if you don't try it you'll never know!
Good Luck!!
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#6 User is offline   Kwag_Myers 

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Posted 28 March 2008 - 03:03 PM

I used Lyrica coming out of rehab with no side effects. Just be aware that it's not a drug that you can quit cold-turkey, but have to reduce your dosage gradually.

You may also want to check into Baclofen. From what I remember of your first post, your injury was a month after mine. I only mention this because I've just recently started getting muscle spasms and strange pain (like someone plugged me into a light socket). Baclofen is also something that you have to work your way into (and out of). I've been taking it for a couple of weeks with no noticable benefit. But it may take up to a month before I do. Or, I'll have to increase my dosage.

I hope you find something that works for you. I hate those long tossing-turning nights (thank God for iPods).
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#7 User is offline   edlee 

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Posted 30 March 2008 - 01:32 AM

For me, neurontin ( gabapentin) worked better. Still not as well as I'd like. Haven't used any opoids nor do I choose to unless it gets a lot worse.
ed
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#8 User is offline   City Girl 

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Posted 30 March 2008 - 02:58 PM

View Postedlee, on Mar 29 2008, 09:32 PM, said:

For me, neurontin ( gabapentin) worked better. Still not as well as I'd like. Haven't used any opoids nor do I choose to unless it gets a lot worse.
ed

I was on gabapentin from the outset of my injury but it compromised my white blood cell count (a 75% reduction) and my physiatrist took me off of it.
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#9 User is offline   Trinity 

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Posted 30 March 2008 - 04:08 PM

I have looked in the information leaflet that comes with my lyrica and there is no mention of a low white cell count (neutropoenia) this doesn't necessarily mean that it won't happen, I'm not sure how different the 2 drugs are. My suggestion (for what it's worth) is to speak to your doctor, if he's in aggreement then give it a go, realistically the worst that could happen is that it doesn't aggree with you and you have to stop it, you will be no worse off than you are now, the best that could happen is that you will have no side effects and be completly pain free, my guess is you will be somewhere in the middle. Taking any drug is a balancing act between the reduction of symptoms and being able to tolerate any side effects. If lyrica is not for you don't despair! New drugs are coming out regularly and are becoming more efficient and better tolerated.
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#10 User is offline   City Girl 

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Posted 31 March 2008 - 02:04 AM

View Posttrinity, on Mar 30 2008, 12:08 PM, said:

I have looked in the information leaflet that comes with my lyrica and there is no mention of a low white cell count (neutropoenia) this doesn't necessarily mean that it won't happen, I'm not sure how different the 2 drugs are. My suggestion (for what it's worth) is to speak to your doctor, if he's in aggreement then give it a go, realistically the worst that could happen is that it doesn't aggree with you and you have to stop it, you will be no worse off than you are now, the best that could happen is that you will have no side effects and be completly pain free, my guess is you will be somewhere in the middle. Taking any drug is a balancing act between the reduction of symptoms and being able to tolerate any side effects. If lyrica is not for you don't despair! New drugs are coming out regularly and are becoming more efficient and better tolerated.
Trinity x

I thought Lyrica and gabapentin are from two different drug families. Are they similar afterall? I see my doctor on Thursday and will discuss it then. I'm worried about the mention of weight gain that someone noted earlier in this post. You didn't have any problems with weight gain did you?
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#11 User is offline   Trinity 

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Posted 31 March 2008 - 09:19 AM

I haven't had any problems with weight gain, the only problems i suffered from was a dry mouth and initially quite bad drowsiness but i was on oxycodone then and that's stopped since I came off it.
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#12 User is offline   kewlcatkez 

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Posted 31 March 2008 - 12:06 PM

View PostCity Girl, on Mar 31 2008, 03:04 AM, said:

View Posttrinity, on Mar 30 2008, 12:08 PM, said:

I have looked in the information leaflet that comes with my lyrica and there is no mention of a low white cell count (neutropoenia) this doesn't necessarily mean that it won't happen, I'm not sure how different the 2 drugs are. My suggestion (for what it's worth) is to speak to your doctor, if he's in aggreement then give it a go, realistically the worst that could happen is that it doesn't aggree with you and you have to stop it, you will be no worse off than you are now, the best that could happen is that you will have no side effects and be completly pain free, my guess is you will be somewhere in the middle. Taking any drug is a balancing act between the reduction of symptoms and being able to tolerate any side effects. If lyrica is not for you don't despair! New drugs are coming out regularly and are becoming more efficient and better tolerated.
Trinity x

I thought Lyrica and gabapentin are from two different drug families. Are they similar afterall? I see my doctor on Thursday and will discuss it then. I'm worried about the mention of weight gain that someone noted earlier in this post. You didn't have any problems with weight gain did you?



Hello,

In answer to your q, Gabapentin and pregabalin both belong to a group of drugs calloed "anti convulsants". There are of course many drugs in this group, several of which have been shown to be effective in treating chronic neuropathic pain. Pregbalin ( Lyrica®) and Gabapentin (neurontin®) are similar that they both work by binding to the α2δ subunit of the "calcium channel" in the c/nervous system.

I have tried Neurontin® and Topamax® and am about to take Lyrica® (along with my opiates ) if the Prozac® doesn;t work on the Neurogenic pain. It was even suggested that people with nerve pain could try Zacin® (made out of the stuff Chillis are made out of and is meant to kill like crazy, but block pain receptors) we are just not sure if it will be that useful. I tried extra hot Tiger balm and didn't help.... neither does aversion therapies and Acupuncture (in my case) nor deep and targeted thinking etc.. although some things have distracted me momentarily, nothing has allowed me to escape...I try and keep my mind as busy as I can.. We are leaving it a while ( and trying other things) before trying the Lyrica® (Pregabalin) b/c I have a connective tissue disorder as well as my paralysis ( which means I dislocate many joints, many times a day) and Pregabalin can cause loosing of the joints.


With regards to side effects, Gabapentin had the most for me, & although it wasn't the case for me, it can cause weight gain;. Prozac®, Topamax® and Lyrica are not associated with weight gain as far as I know, although the Prozac® and Topamax have been known to cause weight loss in some trials.

I hope this helps,

Take care,
K
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Connective tissue disorder & associated paralysis.
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#13 User is offline   City Girl 

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Posted 01 April 2008 - 02:32 AM

View Postkewlcatkez, on Mar 31 2008, 08:06 AM, said:

View PostCity Girl, on Mar 31 2008, 03:04 AM, said:

View Posttrinity, on Mar 30 2008, 12:08 PM, said:

I have looked in the information leaflet that comes with my lyrica and there is no mention of a low white cell count (neutropoenia) this doesn't necessarily mean that it won't happen, I'm not sure how different the 2 drugs are. My suggestion (for what it's worth) is to speak to your doctor, if he's in aggreement then give it a go, realistically the worst that could happen is that it doesn't aggree with you and you have to stop it, you will be no worse off than you are now, the best that could happen is that you will have no side effects and be completly pain free, my guess is you will be somewhere in the middle. Taking any drug is a balancing act between the reduction of symptoms and being able to tolerate any side effects. If lyrica is not for you don't despair! New drugs are coming out regularly and are becoming more efficient and better tolerated.
Trinity x

I thought Lyrica and gabapentin are from two different drug families. Are they similar afterall? I see my doctor on Thursday and will discuss it then. I'm worried about the mention of weight gain that someone noted earlier in this post. You didn't have any problems with weight gain did you?



Hello,

In answer to your q, Gabapentin and pregabalin both belong to a group of drugs calloed "anti convulsants". There are of course many drugs in this group, several of which have been shown to be effective in treating chronic neuropathic pain. Pregbalin ( Lyrica®) and Gabapentin (neurontin®) are similar that they both work by binding to the α2δ subunit of the "calcium channel" in the c/nervous system.

I have tried Neurontin® and Topamax® and am about to take Lyrica® (along with my opiates ) if the Prozac® doesn;t work on the Neurogenic pain. It was even suggested that people with nerve pain could try Zacin® (made out of the stuff Chillis are made out of and is meant to kill like crazy, but block pain receptors) we are just not sure if it will be that useful. I tried extra hot Tiger balm and didn't help.... neither does aversion therapies and Acupuncture (in my case) nor deep and targeted thinking etc.. although some things have distracted me momentarily, nothing has allowed me to escape...I try and keep my mind as busy as I can.. We are leaving it a while ( and trying other things) before trying the Lyrica® (Pregabalin) b/c I have a connective tissue disorder as well as my paralysis ( which means I dislocate many joints, many times a day) and Pregabalin can cause loosing of the joints.


With regards to side effects, Gabapentin had the most for me, & although it wasn't the case for me, it can cause weight gain;. Prozac®, Topamax® and Lyrica are not associated with weight gain as far as I know, although the Prozac® and Topamax have been known to cause weight loss in some trials.

I hope this helps,

Take care,
K


I don't know, however, if my pain is necessarily tneurological. I'm taking amitriptyline for that and I'm assuming that it's working fine because I don't feel that feeling that I got about a month post-injury which felt like my back was on fire.

In terms of taking an anti-convulsant, I don't have spasms so maybe it's not the drug for me. I just don't know. I see my doctor on Thursday and will discuss it with her then. I see my physiatrist later this month so I can also chat with her.

My pain is mostly in my hips. They just hurt when I sleep on them. My massage therapist says the muscles are like blocks of cement and I have her do Shiatsu on them during her weekly visit. I also try to spend a few hours/day standing in my standing frame and I have stretches that I do before bed, when I wake up, and during the day at work when I get uncomfortable sitting at my desk.

My back gets uncomfortable after about 2 hours of sleeping either on it, or on my stomach. It's more of an achy feeling and I can actually go back to sleeping that way after spending a few hours in another position. The few hours in another position, however, are writhing in pain on my hips.

Can anyone relate to this?
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#14 User is offline   Keishaeboni 

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Posted 02 April 2008 - 11:13 PM

Yes the drug lyrica really works for the problems you're talking about. I'm taking it right now for the very same reasons. How were you injured? You're very lucky to have such a low injury level.
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#15 User is offline   RetiredSkater 

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Posted 07 April 2008 - 03:55 PM

I am on Lyrica 75 mg twice a day and it has substantially reduced the amount of nerve pain I have. You would know if you have nerve pain because it will feel like a numbness, tingly, shooting, burning, or stabbing type of pain. I had a L5/S1 fusion and they were only able to decompress the nerves so much (had 75% slippage and 80% compression of spinal nerves). As a result, I have some residual pain, but most of my function in those nerves restored. It took two years two get all the nerve function I do have back. Anyway, since 2002 I have been on Vicodin 5mg several times a day. The Lyrica has allowed me to reduce the amount of Vicodin I have to take to only 2 or sometimes 3 times a day. Now I take the Vicodin primarily for the back pain, not the nerve pain.

One word of caution.... When you first start this drug there can be a high rate of people experiencing dizziness. The best way to deal with these side effects and get used to them is to start off at a low dose (50 or 75 mg) and only take it at night before bed (allowing 8 hours of rest) for the first 5 nights. Then, if you don't feel like you have any side effects when you wake up in the morning, you can start taking the morning dose. Some doctors recommend a daytime dose, but I do not need it. Then, if you are having good results, but need more, you can start upping your dose in the night time for 5 nights, and then in the morning afterward. Be extremely careful the first two days after starting Lyrica and when you up your dosage.

Lyrica works by slowing the reaction time to your nerve impulses. So, if you get dizzy you may not have the reaction time at first to keep yourself from falling during a transfer or change of position. Dizziness at first was the only symptom I have from it. If I stop taking it cold turkey I don't feel well, but I do not have any weight gain or bloatedness like some people experience. Good luck!
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#16 User is offline   dave420atya 

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Posted 08 April 2008 - 04:33 PM

I have some terrible nerve pain in my legs. :oops: My doc. put me on 75mg 3 times a day it didn't help so they doubled it to 150 mg it helped a little . Then one day I tried 300mg and it was like a miracal in about an hour I had no pain :thread jacked: .My doc doesn't wan't me to take 300mg 3 times a day so I only take 300mg if my pain is bad , which is usually twice a day . I kinda take it (as needed)
I still get alot of pain , but now I can get back into life . I started driving again this week . :mfrlol: It's been 3 years of pain and I still hurt but Lyrica helps me manage it so I can do what I need to do and a little of what I want to do to . :lmao:
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#17 User is offline   Jackiefff 

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Posted 06 May 2008 - 01:43 AM

I am on lyrica and i couldn't be without it, I get alot of pain in my left arm from a bubble I had in my spinal cord, another surgery helped somewhat but the lyrica also helps alot
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#18 User is offline   stecurtis331 

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Posted 12 May 2008 - 08:09 PM

hi
The pain clinic are going to start me on pregabelin in a few weeks time
just increased other meds(dosulepin/dothepin) so they are doing 1 at a time.
they eventually want to decrease my morphine 600mg daily and eventually if possible wean me off.
ive tried gabapentin in the past was on 600mg and they worked,then i started getting after effects so the gp weaned me off them,
im in chronic constant pain everyday never lets up,the only thing that works for me at the moment is the diazepam(thats coz they knock me to sleep).
good luck
ste
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Posted 26 May 2008 - 12:04 AM

I've been taking Lyrica for a year and I find it really helps. I started on 50mg 3 times a day and now I'm on 75mg 3 times a day. I definitely notice if I forget a dose!

I had slight dizziness and increase in appetite when I first started taking it but no other problems!
Paraplegic with Spina Bifida. Sensory and function level is T8. T11-L5 fusion 1993. Laminectomy and decompression T10 2006. Spinal fusion T8-T12 with instrumentation Feb 2007. Moderate kyphoscoliosis. Taking 75mg Lyrica 3xday for neuropathic pain.
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#20 User is offline   Abbey22 

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Posted 26 May 2008 - 02:39 AM

My nerve pain has steadily incresed since my injury but I actually quit taking Gabapentin (neurontin®) because my physical therapist and I realized I actually had more control over the quad muscles in my legs if I wasn't taking it. So I guess I traded pain for movement. I tried taking it in a smaller dose but I lost all the control I gained-I think I was just meant to develop an extremely high pain tolerance. I wonder if I tried a different drug if I would lose the muscle control again....
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Posted 04 June 2008 - 04:36 AM

I'm on Lyrica 200 mg twice daily with Ultram as needed up to two fulls pills every six to eight hours. Can't get anything stronger for the pain. Docs are "afraid I'll get addicted."

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#22 User is offline   Emily C 

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Posted 26 June 2008 - 11:18 PM

Hi, All!!!!

I have VERY rare seizures that have landed me in hospital again this week. I called my PCP and my nurse looked into Lyrica for me. They think it will help with the increasing seizures (we hope) Also, I told her about my pain in my legs,& that I have incrediable sensation and yet none at the sametime..she said that is 'neropathy" and Lyrica should help....That my dx has changed now, and they will put me on i t along with the Keppra. My seizures aren't epilipitic but still real and happening. They happen when I'm moved, or in a car, elevator or hauling me into an ambulance!!

I PRAY this helps..anyone else try it for the seizure/neuropathic pain combo?

Good luck with the Lyrica..I wish us both success on it!!! :double-puke: :( :hug:
Take care and God bless... Em
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#23 User is offline   gsp23 

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Posted 30 June 2008 - 03:37 PM

I was on Neuroton (3600mg /day) for the last 2yrs. I recently switched over to Lyrica. My doc recommended I start at 2x a day but after something like 8hrs I notice my nerve pain was already back at full strength. I have switched to 3x a day and seen a drastic improvement. Not yet sure if I am at a maintenance dose yet or if this is going to work in the long run for me as I just did my last adjustment this past weekend, so hopefully it will as I dont get as tired as I did with the high dose of Neurontin I was on.
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