Search found 79 matches

by Kimberly
Wed Aug 08, 2012 3:59 am
Forum: Prescription Medications
Topic: Heart Stopper: Mirapex And Undisclosed Data
Replies: 13
Views: 3024

Heart Stopper: Mirapex And Undisclosed Data

I'm not great at site searching, but did try and did not find this article posted. I was on Mirapex for 10+ years and quit cold turkey after discovering on my own that I was experiencing almost ALL of the worst side effects listed for the drug. In pre-screening for an upcoming surgery, today I learn...
by Kimberly
Tue Jun 12, 2012 8:02 am
Forum: General Topics: RLS/WED
Topic: Surgery Needed....Now what??
Replies: 9
Views: 1430

Surgery Needed....Now what??

I am going to be needing to have a lap. hysterectomy soon and am wondering if anyone has any tips/advice/suggestions for how to: 1) Pre-op - no eating or drinking for 12 hours when I am not even able to do fasting bloodwork. 2) Post-op - endure the recovery for someone like me, who's PLMW is so seve...
by Kimberly
Sat Apr 28, 2012 7:58 pm
Forum: Everything Else...just no RLS/WED!
Topic: Share what you ENJOY doing when you just can't sleep....
Replies: 10
Views: 2624

Re: Share what you ENJOY doing when you just can't sleep....

Kimberly - I will definitely try the loud music and rocking. I use my iTunes when I walk on my treadmill, so I am set up to listen to music at night when RLS strikes. I will make a special playlist with some good rocking' tunes to play. OR - do you recommend quiet music? I recommend both, actually....
by Kimberly
Thu Apr 26, 2012 6:34 am
Forum: General Topics: RLS/WED
Topic: Night rolling
Replies: 13
Views: 2605

Re: Night rolling

Not to sound like I'm looking for sympathy or a woose or anything but sometimes (like last night) I'm afraid to go to bed--the consequences of falling asleep are just too much to voluntarily put myself through, some days. The thought of this being a progressive disease is truly horrifying. Oh boy, ...
by Kimberly
Thu Apr 26, 2012 5:33 am
Forum: General Topics: RLS/WED
Topic: does anyone really know what sets off their symptoms?
Replies: 36
Views: 7377

Re: does anyone really know what sets off their symptoms?

The subject is pretty much it. I find myself frustrated in the task of helping myself, because i can't seem to be able to narrow down the things that set off the symptoms. Do you know what will or has caused your symptoms most of the time? Yes. I am certain that the only thing that triggers my symp...
by Kimberly
Thu Apr 26, 2012 5:31 am
Forum: General Topics: RLS/WED
Topic: Disability Claim
Replies: 11
Views: 2877

Re: Disability Claim

This is not SSDI, this is a group disability policy with MetLife. SSDI is a whole other ball game. I think I was sort of in the same situation years ago. I was only getting 2 hrs of sleep per night and still trying to work full-time. When it became too much, I asked my company to put me on short-te...
by Kimberly
Thu Apr 26, 2012 5:03 am
Forum: General Topics: RLS/WED
Topic: Nationally known RLS Doctors?
Replies: 5
Views: 1724

Re: Nationally known RLS Doctors?

Some years ago I had great success as a patient of Dr. Frankie Roman, who is one of the Directors of the National Sleep Foundation, but stopped seeing him when I moved hours away. Even with the long drive, I am considering making an appointment to see him again. He has offices in the Canton/Massilon...
by Kimberly
Thu Apr 26, 2012 4:47 am
Forum: Everything Else...just no RLS/WED!
Topic: Share what you ENJOY doing when you just can't sleep....
Replies: 10
Views: 2624

Re: Share what you ENJOY doing when you just can't sleep....

I am very envious of all of you. Being able to sit at a computer or do anything with WED. I can't sit long enough to even google anything. Sorry to hear that. When my PLMW tics are severe, I can't do anything but stand, walk and pound my feet on the floor....but at some point over the years I reali...
by Kimberly
Tue Apr 03, 2012 4:58 am
Forum: Everything Else...just no RLS/WED!
Topic: PLMD
Replies: 17
Views: 4570

Re: PLMD

Kimberley that's horrible, how have you managed to cope? God I wish I could take it all away. I am not surprised by your comment on quantity of life, unfortunately; I think it's clear that chronic sleep loss causes earlier death. When you posted before, you hadn't tried opiods yet, had you? Or have...
by Kimberly
Tue Apr 03, 2012 3:54 am
Forum: Everything Else...just no RLS/WED!
Topic: Share what you ENJOY doing when you just can't sleep....
Replies: 10
Views: 2624

Share what you ENJOY doing when you just can't sleep....

Preventing/stopping my PLMW tics requires visual and mental stimulation throughout the night, with as little physical stimulation as possible, except for when I'm forced to stand/walk to stop the movement. Sometimes I save dinner dishes for 3am I used to flip through tv channels, browse the internet...
by Kimberly
Tue Apr 03, 2012 1:42 am
Forum: Everything Else...just no RLS/WED!
Topic: PLMD
Replies: 17
Views: 4570

Re: PLMD

I have had RLS for 30 years, but periodic limb movement while awake and during sleep since 1995. My PLMW is in all 4 limbs and is so severe that, at present, it responds to no medications and for about three years now, has prevented the onset of sleep for between 8 and 10 hours EVERY night. I am now...
by Kimberly
Fri Jul 15, 2011 6:21 pm
Forum: General Topics: RLS/WED
Topic: Have you we tried NOT to move your legs?
Replies: 26
Views: 2745

.... In some senses, sleep disorders can be many times as debilitating (non-functional 24/7) but we show up for work and seem ok so people think it's not that bad. But really we are one step away from killing ourselves, intentionally or accidentally, and meanwhile are living half a life. In 2003, I...
by Kimberly
Fri Jul 08, 2011 3:29 am
Forum: Prescription Medications
Topic: Advice needed
Replies: 25
Views: 4838

My situation is also similar. Symptoms for 30+ years, and now 24/7. Fortunately I am still able to take the Requip although it is not sufficient and it is supplemented with tramadol, and I am medicated throughout the day. Otherwise I just would not function. Sleep is a different issue. My meds help...
by Kimberly
Fri Jul 08, 2011 3:21 am
Forum: Prescription Medications
Topic: Advice needed
Replies: 25
Views: 4838

Wow

[quote="ViewsAskew"][/quote] Wow Ann.....That's some schedule! Let me ask you this....with all that medication, what have been your results, exactly. Can you tell me what your sleep/wake schedule is like as I described in my post....i.e., number of torture hours, number of sleep hours, num...
by Kimberly
Thu Jul 07, 2011 6:33 pm
Forum: Prescription Medications
Topic: Advice needed
Replies: 25
Views: 4838

Advice needed

My sleep/wake cycle for over a year has been @ 8pm - 5-7am movement/torture time, 7am - 11-1pm sleep, 1pm - 8pm normal life. Lately, the movement/torture time is increasing, reducing the time I am able to live a somewhat normal life. My problem has always been finding a med that will either 1) stop ...