Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 02-16-2008, 05:57 AM #1
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Heart Lyrica withdrawal symptoms

Hi - it's Alison here,
I was just wondering if anyone experienced withdrawal symptoms whilst coming off Lyrica.

Most of you will probably be aware that our chemist prescribed the wrong dosage of Lyrica, they gave my mom 200mg tablets instead of 75mg tablets, so I was unable to take the tablets for just over 4 days.

When I wasn't taking the Lyrica, I had horrible withdrawal symptoms, I had panic attacks all the time, I shouted at my mom, was sick, couldn't stop crying, couldn't breathe properly, was even more depressed than I normally am etc etc.

I have started taking the Lyrica again and I am fine now.

As anyone else experienced the same symptoms whilst coming off Lyrica??
Thanks for listening
Alison
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Old 02-16-2008, 07:21 PM #2
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Quote:
Originally Posted by ali12 View Post
Hi - it's Alison here,
I was just wondering if anyone experienced withdrawal symptoms whilst coming off Lyrica.

Most of you will probably be aware that our chemist prescribed the wrong dosage of Lyrica, they gave my mom 200mg tablets instead of 75mg tablets, so I was unable to take the tablets for just over 4 days.

When I wasn't taking the Lyrica, I had horrible withdrawal symptoms, I had panic attacks all the time, I shouted at my mom, was sick, couldn't stop crying, couldn't breathe properly, was even more depressed than I normally am etc etc.

I have started taking the Lyrica again and I am fine now.

As anyone else experienced the same symptoms whilst coming off Lyrica??
Thanks for listening
Alison




Ali,

It is a terrible thing that the Pharmacy made that mistake which has caused this issue.
Most drugs should not be stopped cold turkey because you can have the withdrawal symptoms as you describe.
I really hope you can get to see the new Pain Management team soon as a child your age should not have to be dealing with the consequences of these drugs
Just remember though Ali, we all have the same highs and lows in mood and depression with this disease as a result of problems with our Limbic System. We just have to hope that those around us forgive us and understand us when this happens.

Take care
Tayla
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Old 02-17-2008, 01:29 AM #3
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Hi Ali..
I had a large increase of pain when I went off for only a few days.. and I felt sick no patience levels either come to think of it.. I am not lookin forward to stopping taking them soon, I thought it was just me. Do you find the lyrica helps you alot?
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Old 02-17-2008, 08:09 AM #4
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Hi Allison (and Andrea),

Six months ago I believed that Lyrica looked like a good option for RSD people; the side-effects appeared minimal and it appeared to provide adequate relief to a lot of people.

When I read another of your posts in which you talked about being given an incorrect dosage, the dosage at that time seemed very low and the fact that you weren't getting adequate pain relief seemed to confirm that. I considered replying that I fully understand why physicians are concerned with giving drugs to children, it seems pointless to prescribe so little that it does no good.

BUT, after reading the posts describing "dark thinking" associated with Lyrica, I held off.

Ali, you weigh two pounds less than me, and I'm skin and bones, but if I still needed a GABA drug, the doc would prescribe an adult dosage. After what I've recently learned here about Lyrica, I would not suggest an adult dose for you.

There are other GABA drugs, and many of them have been prescribed for children with epilepsy for years without any reports of additional side-effects on kids.

The kind of withdrawal symptoms you describe with such a low dose, along with so many here reporting how it affects their thinking, leads me to believe you need to look for another GABA: One that has not been shown to be harmful to people your age...Vic
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Old 02-17-2008, 10:25 AM #5
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Quote:
Originally Posted by ali12 View Post
Hi - it's Alison here,
I was just wondering if anyone experienced withdrawal symptoms whilst coming off Lyrica.

Most of you will probably be aware that our chemist prescribed the wrong dosage of Lyrica, they gave my mom 200mg tablets instead of 75mg tablets, so I was unable to take the tablets for just over 4 days.

When I wasn't taking the Lyrica, I had horrible withdrawal symptoms, I had panic attacks all the time, I shouted at my mom, was sick, couldn't stop crying, couldn't breathe properly, was even more depressed than I normally am etc etc.

I have started taking the Lyrica again and I am fine now.

As anyone else experienced the same symptoms whilst coming off Lyrica??
Thanks for listening
Alison



Ali,
Just want to confirm that your dose of 75mgs three times a day is a very acceptable dose of Lyrica.
75-100mgs tds is the recommended dose and whilst some people are prescribed more the research appears to show that the larger doses do not reflected in improved pain relief and in fact can be very dangerous for people for poor renal function.
If you feel better with that dose then it is right for you. 200mgs tds may have resulted in problems in the long term.
cheers and luck
Tayla
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Old 02-17-2008, 01:41 PM #6
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Vic,
I take a very low dose of Lyrica myself. I take 50 mgs of Lyrica 3 X's a day. It helps with the burning pain, but also I take neurontin. Thery seem to compliment each other in combating nerve pain.

Whenever I have tried to cut it down or actually get off of it completely, the nerve pain gets to be way too much.

Ali,
I don't know what to say but that is bad that the phramacy or rather, the chemist as you call them over in England anyway, got the doseage wrong like that. Good thing your Mum caught it. She is on the ball & a very good thing she is. Kudo's to your Mum.

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Old 02-17-2008, 04:37 PM #7
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Hi Debby,

And I thought I was being wildly experimental by mixing beer with wine! I guess the mixture of Lyrica and Gabapentin works well for you, and that's what counts.

I know that different people do well with different dosages of the same med, but the reason I posted was that Andrea said on another thread that the Lyrica wasn't providing Allison any real pain relief. In the past, I've encouraged people to insist that physicians increase the dosage of GABAs until they actually do provide significant pain relief, or until side-effects become intolerable and something else should be tried.

After what I've read about Lyrica in the last few days here at NT, I wanted to make it clear that I don't think increasing Lyrica is a good idea for anyone; especially children, who's frontal lobes are still developing.

In fact, as reports are now surfacing about this drug, I'm beginning to wonder whether it is safe to use at all. Other drugs have done extremely well in the sorts of trials the FDA mandates, then proved to be extremely dangerous after larger populations begin using them and reporting unexpected problems.

I'm very conservative when it comes to new drugs. I would rather wait a while and see how others do before I try them, but thats me.

My bias in this is so strong that I would avoid Lyrica based on what I've learned thus far; there are too many other GABAs that have been around for years, and I would experiment with them first; even if it provided the kind of pain relief you report.

As I said, when a dosage doesn't provide adequate relief, we should demand increasing the dosage until it does. With the recently discovered side-effects of Lyrica, however, and in light ot Ali's age, I don't think that is the proper course: So I said so.

The withdrawal symptoms Ali reported indicate that Lyrica may be acting too strongly on several parts of the brain. She mentioned, I had panic attacks all the time, I shouted at my mom, was sick, couldn't stop crying, couldn't breathe properly, was even more depressed than I normally am etc etc. and there is no way of knowing what is being affected; just that something seems seriously wrong.

I haven't studied Lyrica, and have no idea what dosages are prescribed, so I relied on what Andrea reported on another thread. I am sure, however, that if a drug isn't doing any real good at a certain dosage, withdrawal produces the symptoms Ali described, and reports started coming in that it was severely affecting emotions, I wouldn't take it.

Sorry for another over-long reply, but my shorter posts (like the one above), often lead to misunderstanding of my rationale', so its back to over-explaining again. I really need a good editor...Vic
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Last edited by Vicc; 02-17-2008 at 05:10 PM. Reason: editing error
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Old 02-18-2008, 09:07 PM #8
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Hey Vic,
Thanks for replying. I take a low dose as I said of Lyrica 3 X's a day but I take 900 mgs of Neurontin 4 X's a day. Before I ever got RSD I had Fibromyalgia & I took an over the counter type of GABA(pentin). I had nooooo idea that it worked on never pain. I was just told it might help the Fibro pain. And to be honest I do think it did. I can't for the life of me remember how much of it I took or from what company I got the GABA from. I ordered it over the phone at first, then from the computer. I will have to try to see if I can find that company. I have traded up in Windows computers since then tho & have no idea where the bookmark is at anymore.

Before Lyrica came to the public, I would take a very very low dose of Gabatril. Now talk about affecting my brain!?!? I would go almost comatose on it. Jack would ask me what was wrong & my answer would be, "I am fine & I love you." over & over he said I would say this to him, then lay down & go back to sleep. This would be on a low dose of Gabatril. That stuff was NASTY & I would only take it when the burning pain reached such high proportions that I would cry & contemplate suicide. I had to take less than what the doctor even prescribed for me to be able to function while taking it. I have never had any problems taking Neurontin at any dose, nor any problems this way taking Lyrica. I was on a higher dose of Lyrica, but I could not stay awake at all. Also the weight gain on it was AWFUL, up to 25lbs I gained & have only lost about 10 of it & that has taken me a year.

The doctor & I both tried to wean me off of Neurontin when I started taking Lyrica, but the burning pain came back like a screaming banshee. It is somewhat like you say, what works is what counts as far as being an adult goes huh? *L* I have fought pain of one kind or another my whole damn life. Starting with what the doctor called 'growing pains' in my legs as a child to RSD pain. Pain from mild to as severe/acute as it can get. So now that I am older & I have a great pain doctor I am NOT going to go around in horrible pain anymore if I can help it. Tolerable pain I will & do deal with, but not horrible. Not anymore.

I agree, what is prescribed for children & what is prescibed for adults should be done very carefully. And monitored very carefully. How it affects adults & children can be very very different. And I know children should not be allowed to suffer from pain either, but pain control for them has to be approached differently. I think that one program then have for children with RSD is great. It retrains their brain pathways & I think for them it would work way better than for an adult. But I do want to order the book, "The Brain That Changes Itself" & see if I can do this for myself. My PM Doc thinks that I would be a good candidate for trying this technique. Anyway getting off the subject.

Anyway, again, take care & I do agree with what you are saying here.

DebbyV
ps I hope I made some kind of sense...............
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Old 04-30-2009, 08:42 AM #9
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Default Lyrica withdrawal and me

I was just told to stop taking Lyrica because I could not get a good breath anymore. I'd built up to 150 mgs a day and my fibromyalgia pain had lessened considerably but since the other day I've been experiencing air hunger. I just can not get a good breath until trying for 5 minutes or more and then it starts all over again. I stopped taking it night before last. I've had painful abdominal cramping and diarrhea, nausea, sweating, the pain is coming back, I've been just twitching in my legs like crazy and could not sleep last night....nor have I slept yet today. I already have pulmonary fibrosis on top of asthma. The Lyrica was working until I started having a hard time breathing. I will see my rheumatologist next week but in the meanwhile...I'm in a bad way...including anxiety. I wish I'd never started on in now. How long to these withdrawal symptoms generally last for? Thank you. -Rhonda
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Old 04-30-2009, 10:00 AM #10
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Ali,

I was on Lyrica for about 2 weeks..and had to get off as I gained 20 POUNDS within that time, and I felt drunk when I was on it! I was prescribed 4, 150 mg. capsules per day.

It was horrible. I stopped after I had an incident where I kept repeating the same word over and over" windshield,windshield,windshield,windshield"..and could not stop hysterical laughter (for over 20 miles in a car w/family). They thought I was hilarious, but my tears from the laughter were not from happiness, it was pain!
We had just left the carwash in my son's car..and I was looking at the windshield..and out came the word...I had no control over my speech at all. Scared me,BIG TIME!

My withdrawal symptoms included wild nightmares..I can't imagine what the withdrawal symptoms would have been if I had stayed on it longer
It took me 2 more weeks to drop that 20 lbs that packed on from the use of the med. I still felt burning pain..this drug is not right for me. What does work is 2400 mg. of Neurontin;Cymbalta;Ultram ER 300 mg, and now, Opana ER.

Hang in there
Dew
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WC Injury 03/24/07;Two Right Knee Surgeries on 5/22/07 and 01/16/08. Surgeons and Physical Therapists ignored my concerns of burning pain, swelling, and no improvement and getting worse. Diagnosed RSD/CRPS I/Sympathetically Mediated Pain Syndrome/Chronic Pain on 06/2008 by family doc;on 08/2008 and 12/2008 diagnosis confirmed by two WC PM Doctors: Both legs;hips; hands; and spine effected by this culprit. SSDI granted 01/2009.
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