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 09-24-2009, 08:36 AM #1
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Default New Lyrica User

I just started Lyrica. This is to replace the Trileptal, which I have been on for years. The idea is that it is the same basic "type" of medication (seizure and neuropathic pain treatment), but that I might get more relief.

As I tapered off of the Trileptal, I definitely noticed an increase in flares, swelling, discoloration, and overall pain. So, I think I can conclude it was working - to some extent.

I realize, of course, that we are all different. But, can you share anything I should be aware of (side effects) and tell me how you responded to the Lyrica. I would especially like to hear from people who may have replaced Trileptal with Lyrica, as I have, and how it worked out.

Thank you,

Mike
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Old 09-24-2009, 10:46 AM #2
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Ooo Weight gain, fog

Quote:
Originally Posted by bassman View Post
I just started Lyrica. This is to replace the Trileptal, which I have been on for years. The idea is that it is the same basic "type" of medication (seizure and neuropathic pain treatment), but that I might get more relief.

As I tapered off of the Trileptal, I definitely noticed an increase in flares, swelling, discoloration, and overall pain. So, I think I can conclude it was working - to some extent.

I realize, of course, that we are all different. But, can you share anything I should be aware of (side effects) and tell me how you responded to the Lyrica. I would especially like to hear from people who may have replaced Trileptal with Lyrica, as I have, and how it worked out.

Thank you,

Mike
Hi Mike, I am on lyrica orginally I was taking neurotin. The only side effect I had was weight gain and it was serious, 20 pounds. I caused me to crave carbs. It still does. I have now been taking it for a year. i did get the weight off as my knees were worse wth the weight, but I really have to fight the urge to binge.
My husband is also on Lyrica-(not for rsd) He had the weight gain but also a terrible mental fog for about a month. He almost had three serious car accidents pullilng out in front of oncoming traffic. SO if you drive be very careful. Prior to lyrica my husband was an excellent driver.
The carb craving is tough, but this drug has helped me so much with the burning. good luck, cz

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Old 09-24-2009, 11:09 AM #3
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I am on Lyrica now. I wasn't on anything previously. I also take Cymbalta. The combination has been working well. I still have good days and bad. Humidity and cold are bad for me and I think once winter comes doses will need to go up. When I first started I would get dizzy and very tired and dry mouth. Now that I've been on for a while I don't get dizzy much but I do still get the dry mouth. I always have a water btl. I am always tired but I think that the lack of sleep, constant pain (it's better but still there) and meds combo has alot to do with that. I have also been fighting the weight gain.

Hope it works.
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Old 09-24-2009, 11:53 AM #4
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I am glad that Lyrica is working for some of you, but it caused some serious side effects for me. I hallucinated and slurred my words like I had a stroke. It was awful! I cannot take any anti-seizure meds. They make me just completely out of it. I really hope the Lyrica works for you.
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Old 09-24-2009, 04:13 PM #5
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Hi Mike,

I think Lyrica is a very nasty drug, it made me want to jump off a bridge on top of all the other side effects. I'd stay away from it if I were you. Talk to your doctor, perhaps you should go back to what was working.

Wishing you well with this.

MsL
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Old 09-24-2009, 08:44 PM #6
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Quote:
Originally Posted by Mslday View Post
Hi Mike,

I think Lyrica is a very nasty drug, it made me want to jump off a bridge on top of all the other side effects. I'd stay away from it if I were you. Talk to your doctor, perhaps you should go back to what was working.

Wishing you well with this.

MsL
I may have jumped off a bridge and didn't know it when I was on Lyrica! LOL! My kids and hubby would come home and I wouldn't even remember what I did all day. I could have been wandering in the yard naked and I wouldn't have known it.

I wish everyone well that have used Lyrica and the don't have side effects, but it is not a drug for me.
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Old 09-25-2009, 07:45 AM #7
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Quote:
Originally Posted by Mslday View Post
Hi Mike,

I think Lyrica is a very nasty drug, it made me want to jump off a bridge on top of all the other side effects. I'd stay away from it if I were you. Talk to your doctor, perhaps you should go back to what was working.

Wishing you well with this.

MsL
I remember hearing and reading of some very nasty things with Lyrica, and was reluctant to go that route. I discussed this option at length with all of my doctors (different fields) and my pharmacist before agreeing to the switch. I also heard from a co-worker of my wife and a “friend-of-a-friend” about how wonderful their results were.

MsL, the reason for the switch was that the old stuff was not working as well as it use to, and we are looking for better results. I wouldn’t change for the sake of changing. The Trileptal worked pretty well for many years, and was still working somewhat. But either my pain is getting worse, or the effectiveness of the Trileptal has decreased over the last year or so. It just hasn’t worked as well as it used to.

Thanks to all for your responses. It gives me a better idea of what to watch out for as I “ramp up” the dosage. In particular, I will watch out for the munchies. That is the kind of side-effect that sneaks up. I generally am much more aware of things like fog, fatigue, and confusion.

Thanks again,

Mike
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Old 09-25-2009, 12:05 AM #8
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Default has anyone tried to lose weight while on Neurontin or Lyrica

Have you had success in dropping the poundage caused by these meds?

I take Neurontin and have gained weight and the water retention is terrible. I feel like a large water-laden sponge with limbs! (spongey limbs....)

For about two weeks, I had a protein drink for breakfast, a healthy lunch and then another protein drink for dinner. (fresh fruit for snacks) I did this diligently for two weeks..I even drank dandelion tea which is supposedly a natural diuretic..I also took (and still do) a high quality liquid multi- vitamin with minerals...
I didn't drop a pound ...grrrr

After two weeks, i gave up, started eating dinner again, and even started to infiltrate the cookie jar....
If you have managed to actually lose weight by altering your diet please share your experience!
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Old 09-25-2009, 12:22 AM #9
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I gained at least 30lbs when I was first diagnosised because I was switching meds so much. I think it's just plain tough to lose when you are taking several anti-depressants, much less anti- seizure meds. I don't know what the solution is, but if I do I'll be sure to post it here.
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