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nightowl
Posts: 2
Joined: Fri Mar 06, 2009 4:43 am

Get me a chainsaw!

Post by nightowl »

Hey folks! I'm new to this rls forum but as usual am up because my legs are controlling my life. I like the phrase "get me a chainsaw" because it sums up the desperation that I feel most of my nights. I'm usually up till 4am because of my leg demons. Sometimes after three or four consecutive nights of rls torture, I stand in the doorway of my bedroom in tears, listening to the train whistle in the far distance. Irrationality takes over and I think to myself, I'm going to get in my truck, drive to the train tracks, lay down on the tracks and let the train sever my legs. Then I'll be able to get some rest! Just started with new drug regimen that includes 2mg of ropinerole at night. I couldn't figure out why I am constantly hungry(I've gained 10 lbs. thus far) but I get such bad nausea and dizziness after I take my pill at night that I have to lie down and rock my body in bed for relief - it seems worse than the nausea associated with chemo! Anyway, just putting my 2 cents in and blowing off some steam! Thanks for listening and may God bless you with a restful sleep! Nightowl

ViewsAskew
Moderator
Posts: 16215
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Hi Nightowl,

Welcome. Forgive me for moving your post; I was afraid it might not be seen where it was and wanted to make sure you received replies.

Nausea can be a problem....first, if you are new to Ropinerole, how quickly did you get to 2 mg? Second, is it working?

If it's not working well, there are other choices. Mirapex has recently been found, based on a couple of research studies, to be a slightly better choice than Requip. So, if you are having problems with Requip, Mirapex is definitely worth a try.

Also, it might be that other drugs or a mixture of drugs might work better for you.

Please go to the "sticky" post in this New to RLS section about Managing RLS (you can get there by simply clicking on the link in my signature, below). In that sticky, you'll find a LOT of info about managing RLS. One of the most helpful is a document called the algorithm. It was created by a team of RLS experts in conjunction with Mayo Clinic. This tells you and the doctor what medications can be used and when to switch, etc.

This, to me, is a very important piece of info.

Well, welcome. I hope you find what you need.
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.

nightowl
Posts: 2
Joined: Fri Mar 06, 2009 4:43 am

Post by nightowl »

Thanks Ann. I had been taking requip for awhile but only 1mg because it made me fall asleep driving in the morning. I went to a new neurologist and he put me up to 2mg. I took mirapex for years but it became ineffective and actually made my symptoms worse. I've taken carb/levo for years also but that doesn't help solely with my nighttime symptoms but does alleviate some of the daytime symptoms. I also have a seizure disorder and take dilantin. I don't consume alcohol and try to control my stess level in order to prevent seizures. My only problem is the extreme fatique from the rls that sometimes leads to conditions ripe for a seizure. At this point in my life(age 50), I am discouraged because it seems as though the symptoms are getting worse and the list of medications that I haven't tried is getting smaller. If I take a sleep aid in addition to a rls medication. it results in even more torturous results: I am totally drowsy and incoherent yet I am stumbling about the house bumping into walls and furniture--the need to keep moving the legs. Despite all these problems, I still get up each morning with a positve attitude and try to have a good day. I only wish that people had a greater understanding of how difficult it is to live with moderat/severe rls; I really think that some people think you are making this up or are exaggerating the symptoms, especially when you fight so hard to put up a good front and go about your daily life. Thanks again for my ranting release! Nightowl

Betty/WV
Posts: 587
Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Re: Nightowl

Post by Betty/WV »

Hi Nightowl: Just wanted to say that I totally understand your feelings. And I hope you can find help. I have suffered with this "demon" of RLS for 30 or so years. I also understand how you feel about people (friends, family) not understanding. It really hurts to think that no one cares,, because that is how it feels to us. That is why this site is so great. When I first found it, I would be standing up at the computer pouring out my heart, through my tears. These people, reading my post, understood, and cared. And gave encouraging words and information.
I at least now understand RLS better than before. And I too have tried so many things and doctors. I'm getting some relief from Mirapex and Klonopin. I have been on Klonopin for years and just started Mirapex in August. How long this will last I don't know, one step at a time.
So I'm wishing you the best and my thoughts and prayers will be with you and all the RLSers. Take care. BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

Polar Bear
Moderator
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Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Post by Polar Bear »

Welcome Nightowl. I totally understand your feelings of desperation. I also have suffered symtpoms for over 30 years, and have been on medication for 3 years. Fortunately now my meds help so much, a cocktail of ropinerole and tramadol.

With regard to your nausea on the 2mg ropinerole I wondered if splitting the dose and taking 1mg early in the evening and the other nearer to sleep time would help.

Just a thought. good luck.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
Moderator
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Hi again, NO - please take a minute (or two or three, lol) to read the algorithm for treating RLS. You can find it by following the link in my signature; it's in that thread.

It sounds as if you have augmented on Mirapex (symptoms got worse). If the symptoms also got worse on the carbi- levadopa, then Requip is probably only going to do the same.

Many of us have been at the exact miserable crossroad where you currently find yourself. It's awful. That feeling you're out of options, that it just gets worse....

The good news is that there are many other options. The not so good news is that it may take awhile and it definitely takes a good doc, to help you find out what will work. 98% of us in this situation find help. Some of us get it resolved better than others, no doubt, but it can get a LOT better, and usually does.

It's my strong bias that the only way out is through....and the only way through is by educating yourself. The reason is that not enough docs know what to do, so you have to help them figure it out. Not something that any of us ever thought we'd be doing, or want to do!
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.

Sojourner
Posts: 1657
Joined: Tue Dec 05, 2006 5:56 am
Location: USA

Post by Sojourner »

Hi N and another welcome. I would like to second the fact that there is hope and that with the assistance of a good doc and persistence you will find a med or med combo that will make life and the nights better for you. Keep reading, posting, and trying to have meaningful two way conversations with your doc(s)--insist on it. I think it's always difficult when another condition such as your seizure disorder plays into the mix. I notice you are taking Dilantin which is in a category of meds (anti-convulsants) that not seem to be regularly prescribed for rls. Though I thing neurontin and now Lyrica seem to be the most commonly prscribed for rls/plmd. I myself take neurontin. I'm wondering whether the sedative effects of the dilantin could be adding to the sedating effects of other meds compounding the sleepiness. I know one would not want to mess with any med that is controlling your seizure disorder... but I wonder if one of the other anti-convulsants might do as well for your rls while still controlling the seizures. I'm certainly don't know of the mechanisms of these meds and how they may differ but I wonder if its a conversation point. Discussing the augmentation possibilities is good advice.

Certainly, you are among friends who do understand and with you well.

M.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

lcharles7
Posts: 2
Joined: Sat Apr 25, 2009 10:24 pm

Post by lcharles7 »

Hi I'm new here and not sure if I should start my own thread.

After reading many posts, my symptoms are very mild.
Maybe about once or twice a week, I can't fall asleep because I can't seem to keep my legs still. Nothing hurts, its just annoying. My mother had restless legs. She had everything, Illeostomey, kidney problems, legally blind, cpod, asma, skin cancer. She smoked and drank for about 65 years. I'm not sure she was ever treated for it, but she was always talking about a creepy crawly sensation on her legs.

My worst experience was on a plane last October.
Just last week, I was on the plane, red eye, and had it again.
I did some research and found that citalopram ( I take it for anxiety, ocd, depressioin) can make it worse. I was only taking a 1/2 pill and have now stopped. I also take bp pills, benazypril.

Just thought I'd say hi and introduce myself.
lcharles7

ViewsAskew
Moderator
Posts: 16215
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Hi, lcharles7. Welcome to the group - though wish we never had to welcome anyone every again.

Per the drug - it might not bother you at all. These drugs bother some of us some of the time. A few drugs bother most of us most of the time. Few drugs bother all of us all of the time.

Seems to me the most important part is simply to see how our symptoms are before starting, then see how that are after taking the new drug. If we need the drug, or similar one, we need it. If it bothers us, we have to decide how much it bothers us, if we can put up with it, if there is another option, or if we simply have to have it and then have to take another drug to counter it.

All are tough decisions.

Hope you get what you need from the group.
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.

mackjergens
Posts: 406
Joined: Sat Jul 21, 2007 5:10 am

antidepression meds/rls

Post by mackjergens »

Charles here is the info about antidepressant (cialopram-celexa)
notice there are a couple of meds that do not seem to bother rls, you might wish to discuss these with your dr.
------------------------------------------------------------------------------
COPIED/PASTED FROM www.rlshelp.org
3) Antidepressant Medication
This class of medications should be used with caution in RLS patients. Antidepressants can worsen RLS symptoms more often than help them. As depression is a common problem, especially in patients with severe and persistent RLS problems, antidepressants are often prescribed for RLS patients. RLS patients who are put on antidepressants and notice worsening of their symptoms should inform their physician of this problem immediately.

There are several different classes of antidepressant medication. If a medication in one class causes problems, then a medication from another class may be of more benefit. As with most RLS medications, much trial and error must take place to see if these medications are helping. Due to the long list of antidepressant medications, we will only list them in their appropriate categories.

There are no specific guidelines for using antidepressants in RLS, and generally they are used for RLS in the same doses as for depression. The oldest antidepressants, the tricyclics, tend to worsen RLS more than they help. The SSRI's will worsen RLS more often than helping but they seem better tolerated than the tricyclics. There is only one antidepressant drug, Wellbutrin, which has dopamine like effects, so it may benefit RLS. This however, has not been looked at systematically yet although there are some case reports of Wellbutrin helping RLS. Trazadone may not help RLS but it does not seem to worsen the condition.


Tricyclics & Combinations
Ascendin (Amoxepine)
Elavil (Amitriptyline)
Etrafon (Perphenazine and Amitriptyline)
Limbitrol (Chlordiazepoxide and Amitriptyline)
Norpramin (Desipramine)
Pamelor (Nortriptyline)
Sinequan (Doxepin)
Surmontil (Trimipramine)
Tofranil (Imipramine)
Triavil (Perphenazine and Amitriptyline)
Vivactil (Protriptyline)


MAO (Monoamine Oxidase) Inhibitors
Nardil (Pheneizine)
Parnate (Tranylcypromine)


Selective Serotonin Reuptake Inhibitors (SSRI's)
Paxil (Paroxetine)
Prozac (Fluoxetine)
Zoloft (Sertraline)
Celexa (Citalopram)
Lexapro (Escitalopram)

Serotonin and Norepinephrine Reuptake Inhibitors (SNRI's)
Effexor (Venlafaxine)
Cymbalta (Duloxetine)

Tetracyclics
Ludiomil (Maprotiline)


Miscellaneous Antidepressant Medications
Desyrel (Trazadone)
Wellbutrin/Zyban (Bupropion)


Obsessive Compulsive Disorder Medications
Luvox (Flovoxamine Maleate) - This is serotonin uptake inhibitor which is chemically different than the antidepressants above.
Anafranil (Clomipramine) - This is in the class of tricyclic antidepressants.

Noradrenergic and Serotonergic
Remeron (Mirtazapine) - This is the newest class of antidepressants. It enhances both the noradrenalin and serotonin systems. Remeron may have less side effects than the serotonin uptake inhibitors and the tricyclics, and it even seems to promote sleep. There are 2 case reports of Remeron causing worsening of RLS, so it should be used with caution in RLS patients

SquirmingSusan
Posts: 2991
Joined: Sun Nov 12, 2006 4:08 am
Location: Minnesota
Contact:

Post by SquirmingSusan »

Hi Charles, and welcome to the group. Most RLS doctors don't recommend that you quit taking antidepressants, but rather to treat the increased symptoms, if they occur. It's a fairly small percentage of people who are bothered by antidepressants, and some people actually have their symptoms improve while on them. But if you know that you can live without them, then it might be worth seeing if your RLS lessens when you stop taking them.

One thing that you may want to consider is that there are certain blood pressure medications that can actually help relieve RLS symptoms - one of them is called Clonidine (Catapres). I believe that propranalol is another one that can help with RLS. So you may want to ask the doctor if you can switch BP meds and see if that helps you.

Otherwise, there are a lot of non-pharmaceutical ways of dealing with the symptoms, if they are mild and occasional. We have a section in this message board devoted to those. And you'll probably want to study up a bit about RLS, and what aggravates it (certain meds and certain foods), and what can help.

Welcome to the forum.
Susan

lcharles7
Posts: 2
Joined: Sat Apr 25, 2009 10:24 pm

Post by lcharles7 »

thanks for your advice.
Fortunately, my symtoms are very mild. I have made some changes in my life and don't feel the need for the citalopram at this time. winter is always hard, so maybe in the fall may start taking it again. I'm happier than I have ever been. so I can safely go off the 1/2 pill.

Lori

mackjergens
Posts: 406
Joined: Sat Jul 21, 2007 5:10 am

Post by mackjergens »

Lori,
if you ever feel the need to take an antidepressant again, you might talk with your Dr about taking one of the ones known not to make rls worse. Many RLSer's say that Wellbutrin does not affect their rls.

Since you have mild rls, you sure want to be careful of what meds you take, you certainly do not want to end up taking a drug that would increase your rls. So read as much as you can about the dos/donts of RLS

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