I'm Tracy - new to RLS

[Chipmunk]

Can I just start by saying I really would like a good night's sleep? Just one night?

I have been lurking here for a week or two and you all seem very knowledgeable and resourceful so I'm hoping someone might have some insight into what I could try as far as treatment goes.

I don't know how long I have had RLS/EkD. I am 35 right now so I know that probably indicates a genetic cause for the EkD? After the birth of my second child (four years ago), my husband noticed that even after she was sleeping through the night I still wasn't acting like I got any sleep. That started the whole sleep stuff in motion.

First sleep study I was diagnosed with sleep apnea. No mention of limb movement being a problem.

The cause of that turned out to be vasomotor rhinitis, so my nose was swelling shut at night and blocking airflow. I had my nose cauterized so it wouldn't swell and hoped I would finally start to sleep better.

I did sleep better but still didn't ever feel refreshed, so I decided last summer to go back and get another sleep study to see if I still had the hypopnias (apneas). After waiting for the appt, then scheduling the sleep study, it was last November when I had the second sleep study done.

That one showed no apneas/hypopnias, but I woke myself up 145 times during the night moving around. The sleep doctor diagnosed me with RLS and then I hopped on the med train.

First my iron was low so she started me on iron & Vitamin C supplements (150 mg per day). I got it tested again a month later and it was at 55, which is above the 50 threshold, but I am continuing the iron supplements (fine by me) for another month or so. My TIBC also came back low, which can indicate anemia of chronic disease but my doctor said that it could just be because my body is too worn out to make the iron b/c my other tests came back normal.

I also have extremely low Vitamin D so I am on 2000 IU D3 per day with 50,000 IU D2 once a week.

First I tried Ambien. Half tablet the first night, meh. Increase to a full tablet the second night and the next morning I had lost all memory of the evening before.

Then I started on Mirapex 0.125 mg tablets, with directions to increase by 1 tablet every 4-5 days until I felt my symptoms were better. Long story short(er), first night I felt like I slept quite well. Second night I felt like I slept the same as before I took anything and the third night I was up around pacing the floor, my RLS was 10 times worse then it had ever been before. I got less than 2 hours sleep that night.

Luckily I had read that a worsening of symptoms after a dopamine agnostic could be augmentation so I ignored the nurse who told me to just try taking two that night and told her to ask the doctor, who then said to stop taking the Mirapex immediately and gave me a new Rx for Clonazepam.

I took the Clonazepam for a week or two but found that while it kept me asleep, it was just a drugged sleep. I had virtually no REM or deep sleep (I have a Zeo sleep monitor so I get a report each morning of minutes in each stage of sleep) - it was all light sleep. Both my husband and mom remarked that I seemed more tired than before I had started on the med.

I complicated matters by starting Melatonin at the same time as the Clonazepam so I'm not sure which one caused the lack of REM and deep sleep, but I quit taking them both.

So now I am back to square one. I am also on Wellbutrin 150 mg twice per day, and was on Prozac 10 mg but stopped taking it to see if that is perhaps exacerbating the EkD. I have been off that for a little less than a week; so far no improvement in the quality of sleep.

I take Adderall 15 mg per day (one dose in the mornings) for ADHD. When I was in grad school I took 60-90 mg per day to fully control my symptoms but I am back to teaching high school so my ADHD symptoms are not as much of an issue as when I had to read 40 page articles and write papers constantly.

The Adderall does not seem to affect the sleep quality (I had been off it for 3 weeks by the time of my sleep study) but it does make it so I don't get tired at night as quickly. 15 mg seems to keep me functioning until about 5:00 p.m. so it helps mask the symptoms of the lack of sleep.

I don't know where to go from here. I am allergic to codeine, so I am hesitant to take another type of opiod, and I am also nervous about the incidence of central sleep apnea with that class of drugs.

With my rapid augmentation I assume that other dopamine agnostics are out of the question?

I tried soap under the sheets because there are so many stories of people who swear up and down it works but I just ended up feeling like the princess and the pea with something hard under my mattress all night long.

Thanks in advance for any advice/comments/cures

[sleepdancer]

I was just responding to someone else about test results. Do you have copies of yours? Does it say you have Periodic Limb Movement Disorder? Go over the details of your report and figure out how often you had arousals or awakenings. If it was very frequently, I wouldn't trust those results about the sleep apnea. If you had long stints of both deep and REM sleep, and some of the REM while supine, then it could be reliable. Not saying that the tech or the lab did anything wrong, but they can only capture what you exhibit during that night. About the dopamine agonists, I've had temporary successes with them, and learned to give them time. One bad night does not make them a failure. And I would not increase too quickly. It can take days or even weeks for the body and the med to feel in sync. At one point I was up to taking 4 of the Mirapex and had major augmentation. More is not always better. But you may have given up too soon. Any time you take a med for other things, research if it is known to contribute to worsening RLS. I wish you well as you go forward - I know it's not an easy road. First step is knowing every detail of your test results and see if further questions come out of that.

[Chipmunk]

The apneas were in the first sleep study and I know for sure they were happening because that's why I went in in the first place - I felt like I was waking up all the time trying to breathe through my nose.

What I don't know is if I had the RLS/EkD at that time and it was just masked by the apneas, or if this is something that has developed in the past 2-3 years.

The second sleep study showed zero apneas or hypopnias so the surgery worked as far as that goes. If only there were surgery for RLS/EkD.....

[Chipmunk]

I just read your reply to the other poster - that is a good idea to request the full summary. I have read the one-page summary but you are right that doctors don't always see the significance of things at first.

[badnights]

Just a thought on the dopamine agonists. Because you augment on one definitely does not mean you'll augment on the other, so ropiniriole/Requip remains an option for you, and something you probably want to try before moving on to opiods. Another thing to try is a combination of a lower dose of the DA plus an anticonvulsant, like gabapentin/Neurontin or pregabalin/Lyrica. I don't think the Mirapex will work for you even in combo, because you augmented basically it seems in 3 days by which time you were at .375 mg? That's still a pretty low dose and you augmented quickly, so I'd stay the heck away from Mirapex.

Keep in mind that the hypnotics like Ambien and Clonazepam don't deal with the EkD symptoms, they just help you sleep, which they will not do if the EkD is bad enough. Better to treat the problem. You might still need help sleeping once your symptoms are being taken care of; then you can think about adding a hypnotic back in, but try for one like Zolpidem or zopiclone (not available in US I think) that has a short latency to action and a short half-life. Clonazepam has a 40-hr half-life so a lot of people can't tolerate it (the grogginess last all day and builds up over time). Ambien is good too but you seem to have reacted poorly to it once already. Hopefully you won't even need one once you get your symptoms treated.

[Polar Bear]

I wonder, is Lunesta the US equivalent of Zopiclone.....

[SquirmingSusan]

Lunesta is eszopiclone; it's the purified, active chemical in zopiclone. It's about twice as strong as zopiclone and does the same thing.

[Polar Bear]

Thanks Susan, I knew there was a difference but didn't know just what it was.

[Neco]

Please be careful with your Adderal.

It is a stimulant, and I'm sure you probably know can be pretty addictive. It will be very tempting to take just a little to help with your sleep deprivation but that is how bad things start.

I suggest printing out a copy of the Mayo Algorithm, and not stop making appointments until you find a Doctor who will READ it and actually write prescriptions / try different drugs based on the advice given in the Algorithm for Treatment of RLS.


Whatever you do, do NOT tell any doctor if you've ever taken your adderal for anything except the ADHD, or your treatment options will end up severely limited because they'll just assume your drug seeking.

[Chipmunk]

Yes, I felt last spring that I was getting into a bad cycle where I would take more Adderall to stay alert but then couldn't get to sleep at night. I was never taking more than is prescribed for my ADHD though. My psych said I could take up to 3 tablets per day (30 mg each). I have really bad ADHD lol, although sleep deprivation can mimic and/or exacerbate the ADHD. I have found that 1/2 to 1 tablet a day is a good balance between controlling my symptoms while still letting me get to sleep.