RLS or Separate Condition?

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mikereyes001
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Joined: Wed Aug 14, 2013 5:15 pm

RLS or Separate Condition?

Post by mikereyes001 »

Hi all,

I'm a new user to the site. I developed severe RLS about 2 years ago. After seeing my doctor, he started me on Mirapex which helped immensely (I would be unable to sleep at night at all without it). A few months later, I noticed about an hour after waking, I would start feeling incredibly sleepy as if I had only gotten a 2-3 hours of sleep. This even though I would sleep fine throughout the night. Every day would get worse until I was barely able to function. I had a sleep study done which indicated that my sleep was 'normal' and not affected by my RLS while taking the Mirapex. I did try ambien in addition to the Mirapex. This worked like a charm for awhile, but then it seemed to stop working. My sleep specialist put me on an antidepressant, Imipramine. This worked great for a couple of months and then seemed to stop working as well. I also noticed that throughout all this, I sleep like a rock if I take a nap during daylight hours and feel much better. The Doc wants me to try another anti-depressant. I'm also considering trying Lunesta as well.

I'm a pretty healthy guy in my mid 40's with no other medical issues. My mom has had depression and sleep issues, so I'm not sure if anything genetic is involved. I'm not 'depressed' as far as I know and am pretty happy when I dont experience sleepy symptoms.

I'm wondering if this daytime sleepiness is related to RLS or is a separate Sleep Disorder condition? Any other suggestions/comments?

Thanks!
MIke

ViewsAskew
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Re: RLS or Separate Condition?

Post by ViewsAskew »

Have you tried something other than pramipexole (Mirapex) for the WED/RLS? It is known to cause daytime sleepiness. Maybe a switch to another drug for a short time will help determine that.

Do you have a job where you can sleep during the day? I can imagine it would be problematic for many people!
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.

mikereyes001
Posts: 14
Joined: Wed Aug 14, 2013 5:15 pm

Re: RLS or Separate Condition?

Post by mikereyes001 »

Thanks for the feedback. That may be worth considering, although the sleepiness does not feel like the groggy/foggy feeling of a medication side effect. I did try Requip awhile back as an alternative, but the RLS symptoms were terrible on the night I switched (I switched directly from the 0.5mg Mirapex to 0.25mg Requip.....maybe I can try again)

Unfortunately, I am a financial planner with lots of meetings throughout the day that I need to be alert for. But, I'm working to get into another firm which gives me more control on my work schedule.

ViewsAskew
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Re: RLS or Separate Condition?

Post by ViewsAskew »

mikereyes001 wrote:Thanks for the feedback. That may be worth considering, although the sleepiness does not feel like the groggy/foggy feeling of a medication side effect. I did try Requip awhile back as an alternative, but the RLS symptoms were terrible on the night I switched (I switched directly from the 0.5mg Mirapex to 0.25mg Requip.....maybe I can try again)

Unfortunately, I am a financial planner with lots of meetings throughout the day that I need to be alert for. But, I'm working to get into another firm which gives me more control on my work schedule.


OK - couple of thoughts.

First, about pramipexole (Mirapex in the US). The top doctors now think you shouldn't take more than .25 mg of it per dose. Not sure of the max per day. The reason is that at doses higher than .25 mg, it tends to greatly increase your chances of augmentation. Augmentation is when the drug makes your symptoms worse, the symptoms start earlier each day, or the symptoms spread to other body parts. It often starts slow, but always continues to escalate.

Second, about ropinerole (Requip in the US). You usually need 2 to 3 times the dose of it as you do of pramipexole. So, taking .25 mg of it when you're used to .5 of pramipexole wouldn't come close to helping.

I haven't a clue if the tiredness is related to medication - just that it is a possibility. Stopping it is an easy way to determine if it's the culprit. The only issue is that ropinerole can also call the same issues - so subbing it may not tell you as much as you want. I take it that you have daily WED that must have meds to be controlled? Was it that way when you started taking pramipexole?
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.

debbluebird
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Re: RLS or Separate Condition?

Post by debbluebird »

I was wondering why you are on the antidepressant. It didn't sound like to me that you are depressed. Most antidepressants make WED worse. If you do stop that, you might have to wean off, or at least see how the doctor would want you to stop it.
With the Mirapex, most people start with 0.125mg early in the evening then another 0.125mg a few hours later. I was wondering if cutting back would decrease the sleepiness.

mikereyes001
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Joined: Wed Aug 14, 2013 5:15 pm

Re: RLS or Separate Condition?

Post by mikereyes001 »

Wow, I didnt realize that the standard dose was around 0.25. My primary physician said the 0.25 I was taking was too low. I've been up as high as 0.75 or 1mg. My WED is really severe in that I would not be able to sleep at all during the night without Medication. I tried avoiding pramipexole at the beginning 2 years ago, but after no sleep for days I feel like I was just about ready for the hospital. I could try the Requip again or cut down the pramipoxole dose into 2 smaller doses. I'm curious when the standard recommended time to take pramipexole is (single dose) ? 90 minutes or 2-3 hours before bed?

Some antidepressants have sedative qualities and are used by doctors to treat insomnia and other sleep disorders. They are more accepted for longer term use that a lot of sleep medications like ambien. Thats the real question here as to whether my sleepiness is related to WED, a separate sleep disorder, or even medication side effects as has been suggested here. I'm getting good feedback, so this is really helping.

debbluebird
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Re: RLS or Separate Condition?

Post by debbluebird »

I used to take a dose at 5 pm then again at 9 pm, bed around 10. When I was taking a single dose I took it at 9 pm, but I was taking Methadone at 5 pm. I've always needed that early dose. If your WED is getting worse while you are taking Mirapex, then you are probably augmenting and will have to stop it all together. Changing to Requip won't help. I'm very sensitive to meds so I wouldn't take the antidepressant. While other just increase their meds and take the antidepressant.

mikereyes001
Posts: 14
Joined: Wed Aug 14, 2013 5:15 pm

Re: RLS or Separate Condition?

Post by mikereyes001 »

Ok, thanks. Maybe I'll try splitting my primapexole dose to see if that affects anything too.

badnights
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Re: RLS or Separate Condition?

Post by badnights »

I also thought first thing that the pramipexole might be causing the sleepiness. I stopped taking it after three weeks (perhaps not a long enough trial) for that very reason - I just wanted to sleep all day.

An additional thought: why did you suddenly develop WED 2 years ago? Has your doctor worked with you to try to determine if the WED is secondary to another problem or a lifestyle change? Did you start or stop taking any medication or other substance - food, drink, supplement - then? Did anything else in your life change? Crazy thought, but might you have internal bleeding? What are your iron stores like? Did you have an operation? Are your kidneys OK?

Btw, you should not be taking DAs like pramipexole if your ferritin levels are under 100 ng/ml (serum ferritin, i.e. in the blood).
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

mikereyes001
Posts: 14
Joined: Wed Aug 14, 2013 5:15 pm

Re: RLS or Separate Condition?

Post by mikereyes001 »

I would probably think the same thing about the pramipexole sleepiness except when I first went on it, I had no problems with being groggy.

Actually I had WED a bit more than 2 years ago in a mild form. Then 2 years ago it suddenly became severe. Why is a mystery since I didnt have any lifestyle changes. I did have my Iron checked at that time and it was ok. I'll go back to my records to see the exact results.

ViewsAskew
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Re: RLS or Separate Condition?

Post by ViewsAskew »

mikereyes001 wrote:I would probably think the same thing about the pramipexole sleepiness except when I first went on it, I had no problems with being groggy.

Actually I had WED a bit more than 2 years ago in a mild form. Then 2 years ago it suddenly became severe. Why is a mystery since I didnt have any lifestyle changes. I did have my Iron checked at that time and it was ok. I'll go back to my records to see the exact results.


I have taken pramipexole (Mirapex) for many years. Over time, my reaction to it has changed several times. Initially, I had to be by a bed within 90 minutes of taking it, or I'd fall asleep wherever I was. I"d always sleep through the night. Over time, I wasn't drowsy after I'd take it. After some more time, I'd start awakening after about 4-5 hours and would be exceedingly hot and would have to cool down before I could get back to sleep. Now, I start awakening after about 3 hours and awaken every 3 to 20 minutes for the remainder of time I try to sleep.

Make sure that they checked your ferritin, not just your hemoglobin. And OK to them could be anything over 10 or 15. If you have WED/RLS, it must be at least 50, and better if it's 100.
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.

EeFall
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Re: RLS or Separate Condition?

Post by EeFall »

My RLS became severe like yours when I was about 45 (13 years ago). Several years before that it was bothering me but did not ruin my sleep. I was put on Mirapex and it worked for an incredible amount of time before augmenting - 6 years - but as others have mentioned my dose was low, .125 mg and I had severe RLS 24 hours a day. Taking a large dose will usually decrease the time that Mirapex will work until it starts working against you - augmenting. Larger doses of Mirapex tend to make me sleepy during the day (now I am completely off and take methadone only.

I was put on remeron, an antidepressant, before the Mirapex because they thought I was depressed but it turned out to be I had severe sleep apnea and I was just not sleeping at night. The sleep study revealed that I was waking up about every 30 seconds. After a while they took me off of remeron and I found that it had made me very groggy during the day so that could be affecting you some too. I would not take an antidepressant unless I was clinically depressed and it sounds like, like me, you are just plan tired.

Things change too, it could be that your sleeping has changed at night and that you aren't getting as good sleep as the tests originally revealed. There are devices you can purchase like the Zeo Mobile Sleep Manager that will show you pretty much how much sleep you are getting at night. They do not measure as accurately as a sleep study the awakenings but will show you if you are sleeping and what states of sleep you are in at night like REM or deep sleep.

jul2873
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Re: RLS or Separate Condition?

Post by jul2873 »

I know this is from left field, but when my levels of vitamin D get low, I get daytime sleepiness. The medications may have stripped your body of vitamin D. I need over 1000 units of it a day to prevent sleepiness. D-Ribose (a supplement available on Amazon) also seems to help. Anyway, couldn't hurt to try.

Because of all of these side effects and the worry of augmentation, I'm making do so far with kratom, which is a mild, natural opioid, available without a prescription over the internet. I use the power form, and take a total of 4-5 grams a night, spread out in 4-5 doses. It lets me sleep 3-4 hours at a time, and when I wake up I just take another dose. No side effects so far, and enough sleep that I'm doing fine.

Anyway, good luck to you

Mary

Mary

badnights
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Re: RLS or Separate Condition?

Post by badnights »

Vitamin D has actually been shown to be related to increased WED/RLS symptoms, so it's definitely a good idea to supplement. The proper level is around 20 or 30 (depending on who says it).

Some antidepressants have sedative qualities and are used by doctors to treat insomnia and other sleep disorders. They are more accepted for longer term use that a lot of sleep medications like ambien. Thats the real question here as to whether my sleepiness is related to WED, a separate sleep disorder, or even medication side effects

Two thoughts. One, inappropriately timed sleepiness seems to affect a lot of people on here, but I can't say if it's part of the disease or an effect of the medications. Extra wakefulness at nighttime, in conjunction with the symptoms (nasty sensations and urge to move), is indeed part of the disease, so much so that a lot of us take a sleeping aid.

Two. I have issues with the mentality that makes a doctor feel it is better to prescribe an anti-depressant with sedative qualities than a sedative. There is no scientific reason for this attitude, according to someone who knows better than I do about these things. Intuitively it makes sense to avoid treating a part of the system that doesn't need fixing.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

mikereyes001
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Joined: Wed Aug 14, 2013 5:15 pm

Re: RLS or Separate Condition?

Post by mikereyes001 »

HI,

Sorry about the long response time. I got engaged a few weeks ago and have been caught up in the flurry of Wedding Planning with my fiance'. Thanks for all the input, I will try the different suggestions (i.e. Vitamin D, Ferratin testing etc).

I checked into the Zeo Sleep Manager. It certainly has possibilities. From what I can see, the company went out of business earlier this year, but there are still units available online. Unfortunately, I havent found another company that produces a device that does its measurements from a headband instead of on the wrist (i.e. fitbit). The wrist method has less accuracy apparently.

Thanks for all the help. I'll check in if I have any more updates.

Mike

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