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Old 10-20-2009, 12:59 PM #1
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Default Lyrica does not seem to be helping:(

I began taking lyrica about 12 days ago for internal shaking and the burning sensation on the top of my head. At first I thought it was helping some, but now I think I was just being hopeful. The vibrating continues off and on, and the burning has not improved. I thought it may be helping me with spasticity, but it also seems to be worse on some days and better on others as it was in the past. Plus, I now have severe constipation -- one of the possible side effects. I began experience problems with constipation two days after I started taking it. Plus my ankles are a bit swollen.

So I just called my neuro's office to let them know. They will call back eventually. I am trying to decide if I should start tapering off it it or wait until I hear from the doctor.
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Old 10-20-2009, 01:43 PM #2
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Make sure you don't go cold turkey getting off of it, Barb. And I worry about your swollen ankles...is that a side effect also?
I sure wish you could find a successful treatment for these bothersome sxs!!
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Old 10-20-2009, 02:09 PM #3
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Swollen ankes is a side effect. Neurontin also caused my ankles to swell a bit. I think I am going to start tapering off of it. since I have not been on it too long, hopefully I will not expereince the same problems (nausea and dizziness) that I had when I tapered off of neurontin.
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Old 10-20-2009, 02:24 PM #4
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I think drugs like Neurontin and Lyrica cause swelling and weight gain. I know Neurontin did for me. I am SO glad to be off that med! They must cause water retention because swollen feet and ankles are one of the listed side effects. Seems like the side effects of the meds are almost as bad as the sx we're trying to alleviate.
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Old 10-23-2009, 09:13 AM #5
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My doctor is not in the office this week. So the on call doctor advised to keep taking lyrica for 4-5 days at lower dose (that I had already tapered to) to see if it helps with symptoms, and to increase my fiber intake for constipation. Gee, I wish I had thought of that. Increased fiber is defintely not helping! I am ignoring this advice and tapering down to one pill for the next three days and then going off of it. I think if it has not helped in two weeks it is unlikely to do so in the next few days. And I am not willing to increase the dosage. I do not like using laxatives! So I guess I will just continue having the "bad" vibrations.
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Old 10-23-2009, 11:12 AM #6
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Quote:
Originally Posted by barb02 View Post
Swollen ankes is a side effect. Neurontin also caused my ankles to swell a bit. I think I am going to start tapering off of it. since I have not been on it too long, hopefully I will not expereince the same problems (nausea and dizziness) that I had when I tapered off of neurontin.

I don't think going off it should be a problem, wasn't for me. Dang... sorry this one dodn't help.




I never had constipation with it but did with amitriptyline. I used magnesium, cuz I don't use laxatives either - well, they just don't work. And the only thing that helps even a little for the vibrations feeling is potassium, but that could just be me.
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Old 10-23-2009, 11:39 AM #7
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So sorry, (((((Barb))))))
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Old 10-25-2009, 10:57 PM #8
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When I couldn't take the Neurontin anymore, because it stopped working for my sensory symptoms and that darned burning. I was switched to Lyrica.

I did wean off the Neurontin slowly, after 6 years on it. I was up to 3600 mgs during my relapses. I had swelling of my feet and ankles so bad the skin on the top of my feet cracked open and would bleed.

The skin could not stretch anymore on the top of my feet. My feet, ankles and legs, went back to normal size, but I have stretch marks on the top of my feet, and I have skinny feet again.

When I tried the Lyrica my symptoms got worse. What it was supposed to help, worsened it. So I only did it for two weeks and got right off it.

I have not had any of that Epilepsy medication now for many years. I don't have Epilepsy, so I would not go back on it for anything. It helped for some of my problems, mostly made me sleepy, but not worth the swelling and pain.

It is addictive so I am glad I went off it. It helps some people, but if you have problems with it, then wean off it, unless you have Epilepsy, then you need something to replace it. JMO
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Old 10-27-2009, 06:19 PM #9
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I take Clonazepam (Klonopin) for burning mouth, having tried anti depressants and anti convulsants. It's addictive, but it's also the only one that's helped. Thankfully low dose is what works for me, so I am not taking too much of it.
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Old 10-27-2009, 09:09 PM #10
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Barb, what did you decide to do? Still on the Lyrica?

Laura, I take Klonopin too. I take it for my tremors. It does help with those completely. Hands and head.

But, sorry to say, it doesn't help my burning, I wish it did. Klonopin (Clonazepam) helps with my swallowing issues too, because it relaxes the spasms in my esophagus, that won't let the food or liquid go down and I choke.

All medication works for some and not others, we are all unique that way.

We need one pill that fits all. One that helps us all with all our symptoms. A girl can dream can't she?

Barb, have you tried Klonopin? (brand name or the generic). It takes away internal shaking and buzzing. It is the only drug in this category that has anti-tremor properties.

Others are close, like Lorazepam, but are missing something, and doesn't work for me. JMO
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