Getting along with Lyrica/Pregabilin

Discuss different Pain Management Options; Medication options including side effects and Worldwide variances in names etc.
Painful Man
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Joined: Sat Dec 31, 2011 1:07 pm
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Getting along with Lyrica/Pregabilin

Post by Painful Man »

I recently started taking Lyrica/Pregabilin for my PNE. I started on 75mg per day Week 1, 150mg Week 2, 225mg Week 3, and am now on 300mg per day, and will stay on that dosage until told otherwise. I go morning 75mg, midday 75mg, late afternoon or early evening 150mg. I have found that I can sit on a very comfy chair for periods that were out of the question over the last couple of years. Sometimes with wheelchair cushion on top, and even somtimes with Togu air-go on top of that). I can enjoy a bit of TV now without writhing in my seat.

However, there are side-effects. I can feel the drug in me. I do feel a bit wooly headed sometimes and do daft things. I often feel sleepy, but on the whole I can do things and get on with life. However, come the evening I really don't feel like doing anything other than relaxing. Is that a bad thing?! At night I sleep OK, but I feel rubbish in the morning. It's a bit like having a bad cold or flu. I feel better after breafast.

I wonder how people get on with driving? Yesterday evening I had to go out and do a round trip of about 30 miles. I'd had my usual 150mg with my tea, and quite frankly I had to conclude once I was out that I was not comfortable driving at all, and was glad to get back home. In the day I feel better behind the wheel, but for the moment the evening is out.

I was wondering:

a) Do those taking Lyrica/Pregabilin over a long period get beyond the side-effect described above?

b) Do others find that the medication makes them wary of driving? I live in the country and need a car to get about. My wife can drive a lot of the time, but if I feel like last night again I really don't want to attempt it. How long might I expect this to go on?

Comfortable sitting to all
P_M
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Violet M
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Re: Getting along with Lyrica/Pregabilin

Post by Violet M »

PM, I haven't taken lyrica but when I was on the related drug, gabapentin, I was scared to drive due to the side effects. I didn't take it long enough to know if the side effects subsided but I have heard from others that with lyrica some of the effects do subside. If it eases your pain, helps you relax, and helps you sleep then I think that's a very good thing.

Best,

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
donstore
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Location: San Francisco

Re: Getting along with Lyrica/Pregabilin

Post by donstore »

I take 600 mg of Lyrica per day and pretty much do everything. there is definitely a bit of a buzz that I notice right after taking a dose but I have gotten used to that. I just have to consciously remember to pay attention when driving or doing other skills specific task. It has made a huge difference in my quality of life along with the oxycodone.

Don
Mild to moderate PN for 5 plus years, pain controlled by lyrica and opiates.
Nerve block (unguided) 9/10 Dr. Jerome Weiss - sciatica for 5 months but got numb in painful perineal/scrotal area - he diagnosed entrapment - but no more cortisone for me
Potter MRI 5/11 - rt STL entrapment of PN at Alcocks
Consult with Dr. Hibner Feb. 2012
Bilateral inguinal hernias diagnosed by dynamic ultrasound - surgery on 6/20/13
Feeling a little better, a few more months will tell
DoubleEdgedSword
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Location: Ontario, Canada

Re: Getting along with Lyrica/Pregabilin

Post by DoubleEdgedSword »

I've been on Lyrica for almost 7 months. It does help with the pain cycles I experience, although I still get breakthrough pain every so often.

I'm on a low dose, 75mg twice per day. I talked to my pharmacist about it and she suggested talking to the doctor about adjusting it slightly. She said I could take a low dose in the AM (50mg), another low dose through the day, then boost my evening dose to maybe 100mg or so (so I'm taking it right before bed).

My side effects are many with it, however since it still mostly works, I'll stick with it until I can discuss with my doc..

I have sleepiness from 1.5 to 3 hrs after taking it, depending on how my sleep was the night before. I'm very conscious not to drive when I'm in that 'sleepiness zone' of 1.5-4 hours.

I have dizziness, especially if getting up from a sleep or from sitting/lying down too long. I get confusion, I forget things or lose my train of thought partway through a sentence. I substitute words for what I'm talking about when the name won't come to me.. like calling them 'pink triangles' instead of watermelon slices! :lol: When I type, I can usually get all the letters up there on the computer screen, but they likely won't be in the proper order, so I have to go back and correct them. (I call it my "finger dyslexia" because my brain knows what I want to type, but my fingers can't keep up!)

I do have peripheral swelling in my feet, mostly my right one, some in my ankles and calves too.

Occasionally I get blurred vision, but it doesn't usually last too long. And weight gain.. Weight gain like there's no tomorrow. Lyrica makes me so hungry ("tapeworm hungry" I told my hubby!) I've gained at least 15 pounds in 7 months, maybe more.

I'll discuss the side effects with my doc because I do have a few of the more uncommon ones. I'll have to see if he thinks there's something else that'll work better for me, or if I should stay on it for now.

Good luck with your medications.. :)
On the road of discovery to see what is causing my PGAD.
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Bathsheba
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Location: Northern, VA

Re: Getting along with Lyrica/Pregabilin

Post by Bathsheba »

I am on 800 mg/day-200 mg 4 times a day. I have been on this regime since Oct/2011. My PN was caused by a botched blowing up of my bladder. I was in severe agony which major narcotics barely touched before I started the Lyrica regime.

I have the same side effects others have mentioned-dizziness, fuzzyheadedness and some blurred vision. I wear flat shoes with good traction and am very careful of stairs, curbs, etc. when I walk.

I can and do drive. I have had no problems driving except for one incident (backing into a small tree), which probably would have happened without Lyrica (my mind was somewhere else and I wasn't paying attention).

I have acclimated to the dizziness, fuzzyheadedness and blurred vision and I am on a huge dose. I believe you will also get used to these side effects if you give it time.

By far the worst side effect for me personally has been weight gain. I am 5 feet, five inches and weighed 136 when this started. I was up to 143 six weeks later. I don't have an increased appetite, but I am also bed ridden most of the time. I am afraid to get on a scale, but I suspect I have gained maybe 20 pounds or more since I started months ago. I feel like and look a blimp. I have never been so fat. This is very demoralizing for me as I have always been obsessed by my weight/appearance. I do not know whether the weight gain has stabilized, but I have considered stopping Lyrica because of this side effect. Even on this high dose I have horrible tingling and minor pain in my anus and right labia minora, which I have learned to live with. I also use lots of ice packs.

Bathsheba
Botched blowing up of bladder July/2011
Was on Lyrica 800+ Mg./day for over 2 years
Bad fall due to Lyrica dizziness, seizure
Due to low blood sugar, side effect of Lyrica
Now on gabapentin, OxyContin, tramadol
Looking for pain pump, has to be local
Painful Man
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Joined: Sat Dec 31, 2011 1:07 pm
Location: UK

Re: Getting along with Lyrica/Pregabilin

Post by Painful Man »

Thank you ALL for your replies with your experience and thoughts.

I resisted medication for over two years, until my condition worsened such that I had to face up to at least trying something. I have to say, now six weeks into my Lyrica/Pregabilin course that I am getting a real result. I can sit on a very comfy chair for a good while and read a book or watch TV. There was no way I could do that before. It tends to have to be a very specific comfy chair with just the right upholstery, not any one will do. Most other chairs and seats are still a challenge. However, this small improvement in my quality of life means a lot.

Meanwhile on the side effects, I'm less fuzzy-headed, but still get sleepy sometimes. I forgot to mention the constipation. I'll just keep downing those tinned prunes. However, on the whole, not much else is happening. I'm not sure about weight gain yet, but maybe it's early days. As for driving, I'm still cautious. I've noticed that I sometimes mix up the indicator lever with the wiper lever, that kind of silly thing. But on the whole, on the present dosage, I think I'm OK to drive. Obviously not a drop of alcohol if I know I'm going to drive.

Overall, I have to agree with those that told me before that they wished they'd taken medication earlier. Of course I cannot comment yet on living long-term with this medication, but at the moment I'm glad of the improvement.

Comfortable sitting to all

P_M
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helenlegs 11
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Re: Getting along with Lyrica/Pregabilin

Post by helenlegs 11 »

That's really great P_M,
So glad that this is working for you. Will you try the combination of Lyrica and an anti depressant? (also recognised for tackling nerve pain)
Take care,
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Painful Man
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Joined: Sat Dec 31, 2011 1:07 pm
Location: UK

Re: Getting along with Lyrica/Pregabilin

Post by Painful Man »

Which anti depressant did you mean, Helen? I think I have read about combinations in other people's comments. I suppose I will have a discussion about medication when I go back to Bristol for my next session.

Lyrica is allowing me sit on certain comfy chairs for extended periods, although pain-free time seems to vary. However, I'm not sure I could take more medication in my system at the moment(?).

I'm glad Bristol is working for you, too.

Regards
P_M
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helenlegs 11
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Re: Getting along with Lyrica/Pregabilin

Post by helenlegs 11 »

Well I take duloxetine/cymbalta. Here is the NHS patients website to neuropathic pain which explains the reasons why these drugs work.
http://www.patient.co.uk/health/Neuropathic-Pain.htm
Also
http://www.nice.org.uk/nicemedia/live/1 ... /47958.pdf
http://www.nice.org.uk/nicemedia/live/1 ... /58253.pdf
Maybe too much information :) You could just ask for and try duloxetine if it helps great, If not stop :)
Take care,
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
DoubleEdgedSword
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Joined: Thu Oct 27, 2011 7:15 am
Location: Ontario, Canada

Re: Getting along with Lyrica/Pregabilin

Post by DoubleEdgedSword »

I just added Cymbalta (30mg once per day) to my Lyrica a couple of days ago. I've had more and more breakthrough pain on just Lyrica, to the point of eight-day pain cycles! :shock: My doc suggested I increase my dose of Lyrica.. I'd rather taper off of it if I could.. I also had pronounced depression for a couple of months now, so my doc thinks that this combination should help. He wants to see me in a couple-three weeks to reassess, and next week I'll go to 30mg of Cymbalta twice per day.

I do have headaches, a rumbling gut, and shakiness from it, but I'm hoping I'll settle down as I get used to it, and maybe then I can wean off the Lyrica, which I blame for some of my depression. I certainly can't afford to be on both medications much longer, or I'll need to go back to three jobs again.. (gettin' too old for that!) ;)

Wishing you all comfy sitting.
On the road of discovery to see what is causing my PGAD.
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