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.
![Confused :?](./images/smilies/icon_confused.gif)
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.
![Sad :(](./images/smilies/icon_sad.gif)
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.
![Sad :(](./images/smilies/icon_sad.gif)
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.
![Laughing :lol:](./images/smilies/icon_lol.gif)
Thanks in advance for any advice/comments/cures
![Smile :)](./images/smilies/icon_smile.gif)