Restless Legs Syndrome (RLS) Discussion Board

Does anyone else experience this?
Out of the blue my RLS symptoms temporarily recede and I experience overwhelming sleepiness so that I sleep more or less solidly for between 30 and 40 hours. If I wake up, it is for an hour or two and then am again engulfed in sleep. If I force myself to get up I am absolutely wiped out and end up crawling back into bed and am sound asleep within minutes. It sounds fantastic to the RLS sleep deprived but it is very disconcerting as it comes without warning and I find it very difficult to leave my bed when I am in the midst of an attack.
The first time lasted for at least 5 days but that was when I was in the throes of withdrawing from pramipexole and had had hardly any sleep for over a month.
Since then it has happened four or five times in the space of about a year though for shorter periods of two to three days. It seems to happen irrespective of what medications I am on - though it never happened when I was on pramipexole.
I am normally an active person and typically do not like to be in bed during the day (unless very sleep deprived by RLS). It would be a consolation to hear someone else had experienced it.

I get sleep attacks intermittently. Am relatively sure it is related to blood sugar...but cannot prove that and it can happen without eating or after eating. I had one this week. Mine, however, are much shorter - I usually sleep 45 minutes to 2 hours and RLS symptoms are always what wake me. I can have one a day for a few days, or none for years, then one here and there.

Legs, that must be very difficult...my husband and I discussed your case and we both thought "thyroid!" But that's our experience so we're biased. Years ago, my husband experienced what you described, before his Hashimoto's hypothyroidism was diagnosed. He spent several months in the state you described. If you get a blood test, along with the thyroid panel, also ask them to check your thyroid antibodies (TPO, TGAb) to see if you have the Hashimoto's version of hypothyroidism. I have hypothyroidism too (we do everything together) but I've never had antibodies show up on a test. It's important to know your results. If it is hypothyroidism, it's fixable with a daily medication upon waking every morning. He's never had a sleeping attack like that since being medicated. Also, maybe email Dr Buchfuhrer and ask him about your situation?

Thanks, yawny. I didn't think of that. Would that also cause the massive drop in appetite which I have also experienced? Maybe I will go back to my GP. I have had so many false dawns there that I look for reasons not to go ...

legsbestill wrote:Thanks, yawny. I didn't think of that. Would that also cause the massive drop in appetite which I have also experienced? Maybe I will go back to my GP. I have had so many false dawns there that I look for reasons not to go ...

Yes, hypothyroidism can definitely cause a drop in appetite but it can also cause an increase. That's the fun of it, it can cause anything different or weird because the thyroid is so central to everything and you can't predict how it'll show up in any one person. My husband lost weight and I gained it. But it almost always wipes you out energy wise. Thyroid issues are very common, often overlooked, and can show up at any age. Once I was medicated, I had my energy back within a week.

yawny and legs, I have found all of this to be very interesting because I had the opposite problem. Three years ago my GP decided that I needed to be on thyroid meds because the TSH was on the high end of the acceptable range. I didn't show any of the normal symptoms of thyroid issues other than those that could be attributed to RLS.

Well, last winter my metabolism seemed to go into overdrive. I was losing weight even though my BMI started at 19 and I was eating 4 full high calorie meals a day. I finally started doing my research when I started getting jittery and anxious, which was completely out of character for my Type B personality. I decided to quit the thyroid meds and advised my current GP (different doc) of what I had done. The nervousness symptoms went away almost immediately and when my doctor restested my TSH, it was where it had been with the meds. My weight is now slowly coming back and my appetite has returned to normal.

What I learned from that as well as my research reflects exactly what yawny said, the symptoms vary from person to person and are often polar opposites for similar thyroid levels. If not for the nerves, I would still be on the meds and my BMI would probably be around 17 by now.

When I'm having a period with no symptoms, I sleep longer, 12 to 13 hours at night, but not what you have experienced.
There can be many things that change sleep.

Rustsmith wrote:yawny and legs, I have found all of this to be very interesting because I had the opposite problem...

Wow, Steve, that's quite a reaction to thyroid medication. And then to have your numbers stay the same after stopping medication. I've heard some interesting thyroid related stories but this one takes the cake.