Search found 194 matches

by sleepdancer2
Tue Jan 01, 2019 4:20 am
Forum: Just Joined?
Topic: introducing myself. very much in crisis
Replies: 7
Views: 214

Re: introducing myself. very much in crisis

I commend you for being open with your family and allowing them to intervene. Usually those with addictions prefer to keep their secrets so as to be able to continue the behavior. I had a simlar side effect on Mirapex. Once I got off the med it resolved. Unfortunately I stopped the med abruptly and ...
by sleepdancer2
Sat Dec 15, 2018 12:39 pm
Forum: Prescription Medications
Topic: Need some advice
Replies: 10
Views: 168

Re: Need some advice

I have used both of the dopamine agonists you mentioned. They helped at first but it didn't last, and at higher doses I had side effects and augmentation. Before your doctor prescribed these meds did they order bloodwork? The test we hear the most about is a ferritin level. Those with RLS are recomm...
by sleepdancer2
Mon Dec 03, 2018 6:32 am
Forum: Physical Treatments
Topic: Any luck with a sleep study?
Replies: 17
Views: 544

Re: Any luck with a sleep study?

... I actually through my knee out, I assume from PLMS.... My doctor says RLS and PLMS are different diseases, but I don't buy that. I think one is just an extension of the other. I figure if I go to a sleep clinic, the distraction will either help or I will just be up all night. I've been told I s...
by sleepdancer2
Sat Dec 01, 2018 3:13 pm
Forum: Physical Treatments
Topic: Any luck with a sleep study?
Replies: 17
Views: 544

Re: Any luck with a sleep study?

A sleep study can give the doctors justification for treatment. It can also let one know how severely their sleep is affected, and having that information can help with making treatment decisions. For mild movements with few arousals or sleep stage disruption, the risk of some of the meds may be gre...
by sleepdancer2
Mon Nov 12, 2018 1:26 am
Forum: General Topics: RLS/WED
Topic: Characteristics of PLMD/PLMs
Replies: 10
Views: 250

Re: Characteristics of PLMD/PLMs

Deb, all the standard descriptions of the movements go out the window when medication side effect or augmentation come into play. If you've seen my sleep video, my movements during augmentation look nothing like expected. I was accused of faking it because my movements did not fit "normal"...
by sleepdancer2
Fri Nov 09, 2018 6:37 am
Forum: General Topics: RLS/WED
Topic: Characteristics of PLMD/PLMs
Replies: 10
Views: 250

Re: Characteristics of PLMD/PLMs

For movements to be classified as a disorder (the D in PLMD) they have to meet a threshold of activity. Short of meeting that level, one can still have periodic limb movements. Doctors differ a bit on calling all limb movements that reach the threshold PLMD. Some do not classify them as PLMD if they...
by sleepdancer2
Fri Oct 12, 2018 2:13 am
Forum: General Topics: RLS/WED
Topic: Social Security - US
Replies: 36
Views: 2113

Re: Social Security - US

I filed for disability at age 53. Took me 3 years and was turned down iniitally and on appeal. Had to take it to a hearing with attorney representation. My attorney said it goes easier for those already at least 55, although I know someone else who had the same trouble getting approved and she is 58...
by sleepdancer2
Fri Oct 05, 2018 3:43 am
Forum: General Topics: RLS/WED
Topic: RLS Patient Symposium
Replies: 20
Views: 704

Re: RLS Patient Symposium

Thank you to all who have reported back. That whole day I felt restless (no pun intended lol) and regretful that I did not summon the energy to make it happen for myself. Would have loved to meet those who attended. This forum has been my only source of solace with those who truly understand what I'...
by sleepdancer2
Fri Sep 07, 2018 6:48 am
Forum: General Topics: RLS/WED
Topic: RLS Foundation hosting a Patient Symposium
Replies: 32
Views: 1963

Re: RLS Foundation hosting a Patient Symposium

@ViewsAskew Do you live in LA now? I hear you about it being hard to plan. @Rustsmith I think I would thoroughly enjoy this meeting. The interactions you describe appeal to me a lot. I have always wished more doctors could know a couple things about my journey, as it could possibly help someone some...
by sleepdancer2
Sun Sep 02, 2018 8:53 am
Forum: General Topics: RLS/WED
Topic: Published Research - General Sleep and RLS (WED)
Replies: 439
Views: 104688

Re: Published Research - General Sleep and RLS (WED)

Rustsmith wrote: use of TNS to study RLS

I'm having a "duh" moment. What is TNS?
by sleepdancer2
Sun Sep 02, 2018 8:46 am
Forum: General Topics: RLS/WED
Topic: RLS Foundation hosting a Patient Symposium
Replies: 32
Views: 1963

Re: RLS Foundation hosting a Patient Symposium

Anyone in Los Angeles making the 2+ hour drive down?
by sleepdancer2
Mon Aug 06, 2018 7:10 am
Forum: General Topics: RLS/WED
Topic: Sleeping position relating to RLS symptoms
Replies: 6
Views: 663

Re: Sleeping position relating to RLS symptoms

I find sleeping on my back optimal for rls symptom reduction. If I lie on my sides it can induce an attack. Lying on my front is occasionally helpful during an attack but I rarely choose to sleep that way. Unfortunately sleeping on my back exacerbates my snoring and, according to my sleep study, my...
by sleepdancer2
Tue Jul 31, 2018 8:01 am
Forum: Augmentation
Topic: 15 years is way too long
Replies: 36
Views: 3135

Re: 15 years is way too long

sleepdancer2..Yes that is very useful info. Sounds like its best to take it on an empty stomach. That was my dilemma. On an empty stomach it made me nauseous, so having some carbs with the med was helpful. I looked it up on what to avoid and saw it was proteins. Lots of good info on using that med ...
by sleepdancer2
Mon Jul 30, 2018 9:35 am
Forum: Augmentation
Topic: 15 years is way too long
Replies: 36
Views: 3135

Re: 15 years is way too long

Sinemet was the first drug I was put on after diagnosis in 1998. I was on it a few years before a different doctor told me it should be the last resort, not first. To the best of my memory, he said the agonists prompt the body to work but that Sinemet is a replacement and should be reserved for when...
by sleepdancer2
Mon Jul 23, 2018 9:25 am
Forum: Physical Treatments
Topic: Latest on TENS Unit Use for Nighttime Symptoms
Replies: 52
Views: 21793

Re: Latest on TENS Unit Use for Nighttime Symptoms

Please do let us know if the placement on either side of the lower spine has any effect for you. I would love to have a quality TENS and really get into all the bells and whistles. On second thought, that would probably be wasted on me. lol I'm so basic.

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