Lyrica maybe the answer for me.....

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runkrun
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Lyrica maybe the answer for me.....

Post by runkrun »

I recently commented on my RLS being out of control and my cocktail of meds I must ingest daily just to function.(Norco,Neurontin 600 mg 4 @ night, Xanax 1mg) I'm also seeing a new neuro guy @ Henry Ford for possibe M.S. on Monday. I am currently on sick leave due to all the symptoms, no sleep, and trying to make med adjustments. I can't take the D.A.'s they cause me to augment. So out of desperation my Primary doctor prescribed Lyrica 150 mg twice a day. The first night I slept for 9 hrs. straight! Amen!! I have been on the Lyrica for 3 days so I'm trying to ride out the side effects. Kinda bouncing off the walls, but my RLS is much better. The info does mention possible mania, restlessness etc. But hopefully this will pass. I see Dr Silber @ Mayo in Sept.(one of the authors for Mayo's algorhythm) I'm very grateful I found this website and connected w/ others that suffer like I do. So this may be a medication possibility for others. Just wanted to put it out there. I'm also a nurse, and just to let you all know about the Tylenol situation. Believe me the drug companies have already jumped on the bandwagon to put alternatives out there w/ alot less Tylenol. They will prosper from this, beleive me!! Thanks for listening! I'll let you know what happens Monday.
Last edited by runkrun on Thu Sep 24, 2009 11:16 pm, edited 2 times in total.

Neco
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Post by Neco »

Hopefully you will adjust to the Lyrica and things will be a lot better for you, keep us posted.

ViewsAskew
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Post by ViewsAskew »

Also hoping that you adjust to the Lyrica. It seems to help some of us. If you have side effects that you can't deal with, Neurontin might be an alternate to try, too.

Let us know how it is to see Dr Silber. I've never met him and don't know anyone who's seen him. I hope he's as good as some of the other docs who worked on the Algorithm are.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

runkrun
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Post by runkrun »

I saw the new Neurologist today @ Henry Ford Hospital in Bloomfield Hills,Mi. She was very knowledgable about M.S. but she said she was not a movement disorder specialist for RLS.She did not think I had M.S. but, my MRI(brain)had some increased white plaque areas that I did not have 5 yrs ago. So now I'm going to have labwork,spinal tap and optic nerve study for an affirmative diagnosis. Regarding the RLS... stop the Neurontin and increase the Lyrica to 150mg 3 times a day. I have been on this med now for 5 days and have had a definate improvement in the sleep department. Sleeping 7-8 hrs without waking due to thrashing, severe leg pain, or "creepy crawlies". Thank God!! So maybe the increase dose of Lyrica will help my daytime RLS symptoms. I'm thankful that she agreed w/ the rest of my meds, especially the opiates. She stated the physician to see in Michigan for RLS is Dr. Peter Lewitt. He is the guru for RLS/Movement disorders. But for now I will keep my appt. w/ Dr. Silber @ Mayo in Sept. Things are definately looking up!!
Last edited by runkrun on Fri Sep 18, 2009 1:51 am, edited 1 time in total.

ViewsAskew
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Post by ViewsAskew »

Aha! A guru in Michigan. We have a thread somewhere....maybe I'll find it and add that tidbit.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

runkrun
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Joined: Fri Jun 12, 2009 2:54 pm

Post by runkrun »

I have been on Lyrica now for over a month. This medication replaced Neurontin 600mg(4) at bedtime. I had been on Neurontin for 11 yrs, so it either had just stopped working or my RLS worsened. My neuro recently increased my Lyrica 150 mg 3x/day. This medication has not only helped my RLS, but I continue to sleep well.(did not think I would be saying that again) Side effects have leveled out. I'm also on Xanax 1 mg 2x/day and Norco 10/325 8/24 hrs. Of course I must continue to exercise daily, hot showers etc., but at least my RLS is under control and has become a way of life! Is there any Refractory RLS sufferers out there who do not have daily symptoms and do not have to do all the exercising? In addition, prilim reports are showing no M.S. Yay! Hope this info is helpful for someone out there!
Last edited by runkrun on Fri Sep 18, 2009 1:51 am, edited 1 time in total.

ViewsAskew
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Post by ViewsAskew »

You must be so relieved that you don't have another issue to deal with. That's wonderful news.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

runkrun
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Joined: Fri Jun 12, 2009 2:54 pm

Post by runkrun »

I'm very grateful that my physicians have found a cocktail of medications that work for me!(Lyrica, Xanax, Norco) However, I'm having severe short term memory loss. I have to write down everything or it's gone. I'm also having problems finding the right word mid sentence. Granted, I'm over 50, but this is early Alzhiemers crazy. I take very good care of myself, exercise daily, sleeping well etc. Is there anyone out there having memory problems from medications? For those of you on a hefty dose of opiates, are you having this side effect? I'm not complaining, because again, I'm so very grateful I have RLS relief! But if I have to lose my memory over it.....oh well! It goes sooner or later. Thanks for listening.
Last edited by runkrun on Fri Sep 18, 2009 1:51 am, edited 1 time in total.

Neco
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Post by Neco »

As a recovering addict, I think I can say that even when my habit was at its worse, I didn't really have memory problems, or problems in mid-conversation (granted I was not very social, however I was very lucid the majority of the day when I would need to work, etc)

That's not to say it couldn't be the cause, but I think it would have to be a consistently high dose or something..

It may just be the combination of meds, however I am leaning more towards the Lyrica and Xanax combination causing it, or possibly both combining to make their respective effects worse.

If anything, I would see if you could cut down, or eliminate the Xanax, if you don't have other major problems with Anxiety or panic attacks, etc.. Opiates themselves do have anti-anxiety effects (one problem my doctor believes my addiction was being fueled by, was anxiety).

But quitting benzo's can be a really rough experience, mentally and physicially, especially if you have been on them for a sustained period.. Ann would be able to tell you more about her experience with stopping Clonazepam. Granted she fell into the worst case scenario, it can still be a rough experience for most people.

ViewsAskew
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Post by ViewsAskew »

I do think that we are all somewhat different and that what works for one just doesn't work for the next. There are several people here who have NO problems with opiates (or any other drugs) and memory and others who have devastating effects. And others, like me, who are in the middle. I am affected, but it's variable and if I sleep well, it's almost non-existent.

I was more affected by the benzos and the anti-seizure drugs that I am the opioids. When I was on them together, it wasn't good.

Things that some people have done is to work with the doctor to try substituting same-class drugs that have shorter half-lives to see what happens. Or substituting other class drugs. Etc. It's not fun to do this trial and error stuff, especially once you find something that works on the RLS!

As Zach said, some of us do have a very difficult time coming off of a benzo. But, about 50% have NO problems at all! I hope, if you need to try some substitutions that you're in the second category. As Zach mentioned, my experience was one I wouldn't want my worst enemy to go through.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Cattolico
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Post by Cattolico »

Ann,

I'm learning a lot here. I didn't realize the problems some of us have with Klonopin. When I first got RLS, I was on Klonopin for about 3 months. When I stopped, I had no adverse effects at all. But maybe 3 months isn't long enough period to conclude anything (?).

Ed

ViewsAskew
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Post by ViewsAskew »

2 weeks is enough to cause problems in the very sensitive, but a month is what they consider to be the cut off point. At three months you'd probably have had difficulty if you were sensitive to it, so sounds like it won't be an issue for you. Then again, our body chemistry changes so it's possible that the future could hold different results....I really don't know.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

SquirmingSusan
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Post by SquirmingSusan »

Benzos are known to cause memory problems when used over the long term. I took diazepam for 10 years, and didn't really notice much of a problem, though, but my doctors always asked if I was having memory problems yet. It seems like the anticonvulsants like Neurontin or Lyrica can cause a certain amount of mental fogginess as well, at least while they're active in the body. I don't know about long term effects, but I think they're supposed to be better than the benzos.

I can't say that I've noticed memory problems with methadone. I do notice that my mind really doesn't function when I don't get enough sleep, so I take the darned stuff so that I CAN sleep.

Taking meds for anything is all a huge balancing act. We trade symptom relief for another, hopefully less serious, set of issues. It all has to do with what we can live with.
Susan

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Post by Sleuth »

I have taken anti-depressants for almost 40 years. I started losing my memory when I was in my early 40's. More than memory loss, was the loss of my vocabulary. I used to have an excellent vocabulary. Gradually, I found myself literally at a loss for words. I could envison the word, but couldn't think of it. I used to joke with friends that the title of my book would be "I Lost my Adjectives." It was the adjectives that went first.

When I was working in an office, it was becoming a liability. I would stand there in a meeting and muddle through a sentence. That was not good for me on a professional level.

I am now close to 67 and the memory loss slowly continues. It is annoying, but I live with it. Actually I wish it was the worse thing in my life.

Oh, almost forgot to say that I believe my memory loss at such a young age is due to the anti-depressants. I also smoked pot nearly every day for about 10 years starting when I was about 30. For some reason, I don't believe that had anything to do with the memory loss.

I am going to start Lyrica this week which is why I pulled up this thread. I am waiting for my insurance company to approve partial payment. I can only imagine how much the drug must cost if I have to get approval.

Oh, dear, I just looked up the side effects of Lyrica. I don't know which one is more dreadful...edema, weight gain, blurry vision, constipation, gas; trouble concentrating. :(

Dale

Nicky
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Post by Nicky »

I was prescribed Lyrica earlier this year for my RLS, but didn't start it as the pain/sensations have been somewhat undercontrol (& my mother didn't get on with this med at all). I take Ropinarole & cloneazepam. The Clone really helped me in the early days (to stop me jerking awake). It still helps but I wake up frequently & assume it's my PLMD (they won't give me a sleep sudy here in the UK). If I could just get some sleep through the jerks, will Lyrica help this aspect? Anyone got a view? Thanks,
Nicky

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