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Old 07-11-2012, 03:53 AM   #1
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losing it from RLS

I am new to posting for getting help rather than offering help, but I am desperate to get my RLS under control. It is terrible and keeps me up all hours of the night, practically every night. I have bad SI joint arthritis, so the RLS affects my pelvis too, so my entire bottom half is in pain and restless all night. I give up and get up and eat, work on computer just for distraction, but am getting no sleep as a result. I am on Sinemet 10/100mg but can only tolerate 1/2 pill, otherwise am dizzy for entire AM next day. Also take calcium, Mg at night. Have tried Neurontin but get too sedated and can't get awake and up in AM. I have sleep apnea, am on CPAP, so between the "gas mask" bothering my face and my bottom half in constant pain and unwanted motion all night, I am beside myself. Any ideas would be so appreciated!

 
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Old 08-16-2012, 12:27 PM   #2
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Re: losing it from RLS

It must be really difficult what your experiencing at the moment! Not being able to sleep, it's like a vicious cercle that triggers RLS...
I'm new to this, so I'm not sure if the advice that I'm able to give you can help you...
Have you try ativan (lorazepam), it help you sleep and it relax your muscle at the same time. Or, maybe you can take a walk, rather than sit at the computer to help you relax and change your mind. Also, I read somewhere that calcium and magnesium compete in your intestin for absortion. Maybe be taking calcium you reduce your intake in magnesium and that increase your muscle spames.
Hope it can help...

 
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Old 08-19-2012, 08:36 PM   #3
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Re: losing it from RLS

I have found that by not eating anything that is sweet, chocolate, or has caffine in it before bed time has helped tremendously. Also, exercising and keeping in shape keeps your legs occupied -- as it were.

 
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Old 10-12-2012, 12:12 AM   #4
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Re: losing it from RLS

I do gralise 600x3, clonzepam 1mg as needed<just be careful with that stuff>, stretching, specific low carb diet, cpap, avoid allergens, no foods after 6pm. Thats what I do. Drink water, magnesium etc.

Id get a refit on that mask if its bothering you. Maybe try a nasal or full face, switch em out? I make sure to clean my gear every week, I have pets and live in Texas, allergy central here. Also check to see if your filter is dirty, if it is try to get a new one or clean it just dont tear apart the fibers. Try a humidifier tank for cpap also if you can get one, that helps me alot. I also use a temp controlled hose. I tend to breath easier around 74 degrees for some reason.

Pick a time to take the meds, for me its 9pm, in bed by 10pm on average, sometimes Im up late working on things or reading news. My biggest problem is I start to feel fine and then begin to neglect sleep.

Test at doc your breathing, shud be at 600-650 I believe if its lower then that could be the culprit. I was taking all my meds, doing all the things right but my breathing was at 300 m/l on the test. So my legs were really restless! Once I got that under control, and back to 650 been sleeping like a baby every since!

No stress! Breath, relax. Take control and organize!

Good luck and hope this helps!

 
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Old 10-12-2012, 12:35 AM   #5
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Re: losing it from RLS

Thanks for your suggestions. What is Gralise? I am not familiar with that.

 
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Old 10-12-2012, 01:11 AM   #6
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Re: losing it from RLS

Gralise is an extended release of neurontin <gabapentin> It comes in 300mg and 600mg tablets. I take it 3 times a day, Doc told that going over 2400mg a day can have adverse affects on liver. Basically imagine the effects of gabapentin but throughout the day and night! Currently looking for something else though, dont like the effects it has on livers and such.

 
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Old 03-14-2013, 01:28 AM   #7
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Re: losing it from RLS

I have had restless leg syndrome since lower back surgery back in 1995. Back then there were no medications for RLS, so I was given Clozepan which is an anti-anxiety. When they came out with medicine for RLS I checked it out but the cost was 5x's more, so I stuck with Clozepan. Recently, I tried a new RLS med and had insomnia. So, I have decided to stick with what I have been taking. It's one of those, "If it ain't broke..." I know an anti-anxiety seems odd, but it works for me. Light exercise before bed helps too.

Good luck with your battle. RLS is very difficult to deal with.

 
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Old 03-17-2013, 03:20 AM   #8
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Re: losing it from RLS

Hi hon, I have had RLS for years. Last March I started going to a new dr. who put me on Mirapex(are the generic of Mirapex) and it has literally Changed My Life! It does cause some sleepiness but its worth every bit of it. I no longer have those long horrid nights of RLS..I had it in my whole body, Everywhere. I suggest to you to try this before Anything else, its like a MIRACLE..don't wait around suffering any longer..Hugs..Godbless U

 
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Old 03-23-2013, 07:20 PM   #9
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Re: losing it from RLS

ladybud I feel your pain. My legs hurt every day all day. I'm sorry that I don't have a cure for you, wish I did. I am currently taking Mirapex 4x day. I also take Gabapentin for diabetic neuropathy, in addition to several other drugs. For some time the Mirapex did help. Now it's just marginal, if at all. That's the problem with the meds that actually help RLS. They say that they work for a while and then stop helping. You change meds and it helps for while...etc. The most scary thing to me is that the older you get, the more RLS progresses. Maybe after we've gone through all the meds, we can start over from the beginning and the first one will help again. I would write more but my legs are killing me. I have to go stretch out. I, too, am desperate to get my RLS under control. Good Luck!!!

A fellow sufferer.

 
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Old 03-24-2013, 09:03 AM   #10
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Re: losing it from RLS

I do get some relief from Sinemet, available in generic too. I take 1/2 tab, a very low dose, of the 25/100 (or 100/25) about an hour before bed. It is RX, but works for me if you haven't tried that one. No side effects for me at that dose, but bigger doses available too. Since RLS is caused by Dopamine deficiency, it theoretically makes sense that a drug that raises Dopamine levels would help, like Wellbutrin or bupropion, taken in AM or twice a day. Might help the daytime symptoms and doesn't cause drowsiness. Worth a try too. Takes a couple of weeks of daily use to evaluate.

 
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Old 05-30-2013, 07:39 AM   #11
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Cool Re: losing it from RLS

Quote:
Originally Posted by ladybud View Post
I am new to posting for getting help rather than offering help, but I am desperate to get my RLS under control. It is terrible and keeps me up all hours of the night, practically every night. I have bad SI joint arthritis, so the RLS affects my pelvis too, so my entire bottom half is in pain and restless all night. I give up and get up and eat, work on computer just for distraction, but am getting no sleep as a result. I am on Sinemet 10/100mg but can only tolerate 1/2 pill, otherwise am dizzy for entire AM next day. Also take calcium, Mg at night. Have tried Neurontin but get too sedated and can't get awake and up in AM. I have sleep apnea, am on CPAP, so between the "gas mask" bothering my face and my bottom half in constant pain and unwanted motion all night, I am beside myself. Any ideas would be so appreciated!
i hear ya. rls is no joke and most people just don't get it. HORIZANT works well for me once a day at 5Pm no morning hangover however, it is currently of the shelf because glaxoKaline sold it to another company. I was on requip but it stopped working. horizant is supposed to be back "sometime in June" in the mean time i am jumping out of my skin. i asked a covering doctor for some painkiller to use until horizant comes back NO way! she made me feel like a drug seeker even though that is an acceptable treatment. ya know all the advise eveyone is providing is great, but this syndrome has a will of its own what works today may not work next week. HAS ANYONE TRIED THAT NEW NEUPRO PATCH.???? BTW...there are new cpap machinces that are more comfortable.....as far as rls i vote for horizant

 
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Old 05-30-2013, 05:09 PM   #12
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Re: losing it from RLS

Since I last posted, I've had a sleep study (which I detest). However, I am committed to using the CPAP once again hoping this time I can tolerate it. The doctor 'reading' the sleep study wrote that he believes the use of the CPAP will 'cure' the RLS. I have no faith in that assessment. I wish, though, it to be true. Also, the sleep study specialist that ordered the sleep study also says she believes that RLS will be 'cured' with the CPAP.

I have had RLS since I was a child. My Dad had it, I have 3 brothers that also have it. Why on earth would I believe that use of a CPAP would cure me? None of them use a CPAP, I realize, but I guess I will believe it when I see it (or feel it, rather). I've been disappointed in my doctors for some time. I'm beginning to think none of us will ever find a doctor that will LISTEN and BELIEVE us.

Wishing everyone the best.
rlsgrandma

 
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Old 05-30-2013, 05:38 PM   #13
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Re: losing it from RLS

I wouldn't hold your breath (ha, ha) as I AM on CPAP for apnea and still have RLS. Maybe you can hope it will be less severe, but I wouldn't expect a cure!

 
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Old 05-31-2013, 09:52 PM   #14
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Re: losing it from RLS

omg u need to take pramiprexole i have acute rls and every thing else is a waste of time, sinemet will give u rebound effects,u need a dopamine agonist either pramiprexole requip/repinrole.

 
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Old 07-09-2013, 05:54 PM   #15
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Re: losing it from RLS

I see a chiropractor on a regular basis. Every once in a great while, the RLS acts up and he adjusts something in my lower back and boom!!! it's gone.

I used to have a terrible case of it. Not anymore.

 
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