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Re: Checking in, a hodge podge

Posted: Fri Apr 07, 2017 7:48 am
by leggo_my_legs
legsbestill wrote:45 is young - very young


It's been quite some time since anyone called me young! Thanks! :lol:

Views, I suspect I have very mild WED/RLS too. Triggered mostly situationally, like on a long flight , I get it in my whole body and am like almost convulsing and impulsively thrashing about. And other mostly isolated incidents. In addition to the DAs making me feel bad, I am creeped out by them so trying to stay away.

Re: Checking in, a hodge podge

Posted: Mon Apr 10, 2017 8:18 am
by badnights
given Ann's experience, you're wise to be cautious of DAs. But I imagine you will need some, so the best approach is to keep the dose as low as posisble by combining with an opioid, and to keep your ferritin levels up.

I've often wondered since I talked with Ann about it whether I too wasn't more of a PLMS than a WED/RLS person before DAs. I went to the doctor because I was dreadfully tired all the time. I woke up a lot at night - - I would be dragged up out of a deep exhausted sleep by some unknown force, and as I became conscious I knew what was happening and dreaded it - and I would just lie there wide awake. I would get up almost immediately.

I had the creepy sensations and urge to move, have had since I was a kid, but if I could get to sleep past them I was ok, and I usually could. The sensations weren't a big part of why I went to the doctor. It took me an entire year to get a diagnosis, and during that time, the same multiple awakenings per night (that I Was aware of) went on, and I still wasn't complaining about creepy sensations. But when one doctor asked me about it, I said yes, I get that. So he diagnosed me with RLS/WED and put me on ropinirole.

It worked like a dream the first night. The second night, not so well. Augmentation in under a week. And the whole sordid mess followed and still follows.

Re: Checking in, a hodge podge

Posted: Tue Apr 11, 2017 7:59 am
by leggo_my_legs
badnights,

Wow, augmentation in under a week. How rotten!

I have also had symptoms since I was a kid. I used to kick the covers off my sister if we shared a bed in a hotel. I got in big trouble, but nobody thought to take me to the doctor.

I was diagnosed in September 2016 after I started taking off my sleep apnea mask in my sleep. My sleep doctor was right...in general I was thrashing about and demasking myself just as part of all the restlessness. Very grateful to her for suggesting in-lab sleep test!

Re: Checking in, a hodge podge

Posted: Tue Apr 11, 2017 8:35 am
by badnights
When we have this from an early age, we never think to mention the sensations to anyone. It's like they're a part of life, and if we even give it a thought, we assume everyone feels them.