Sleep Study Last Night & Ivory Soap Update

[kteague]

My doc just returned from the AAN conference in Boston, and emailed me over the weekend that he wanted me to have another sleep study. Had it last night (WOW that was fast!).

The staff was very attentive and and the accomodations were more than adequate. But it was a long miserable fitfull night with the legs dancing all night. Haven't had a night that bad for a few weeks...hmmm... not since I put FOUR bars of Ivory soap in my bed.

Will update after doctor's visit to get results of study and other consultations.

Kathy

[Slinky]

Well, I've heard people sing "I Could Have Danced All Night" but you certainly are living proof that dancing all night over an extended period of time ceases to be fun, Kathy!!! I certainly hope that this sleep study provides some information that can help you get a full night of restful sleep - and then MANY MORE nights of restful sleep! Meanwhile, keep that Ivory soap handy at the foot of the bed under the sheets!!!

[SleepySandy]

So, Kathy are you going to tell the doctor about the Ivory soap ?

[TerryB]

Hi Kathy,
How exactly does one install four bars of Ivory so that the bars are not a discomfort in themselves. My wife has lots of leg cramp problems and I'd love to be able to sneak the soap in and help her sleep.

Thanks,
TerryB

[kteague]

Yes, I will tell the doctor AFTER he has given me all he has gathered in the consults. (Want to hear what he says before he thinks I'm crazy!)

[Jcastle]

I have read several threads here that mention the soap thing but could not find any one post to summarize it. Could one of you knowledgable ones please enlighten me?

[Wulfman]

I have read several threads here that mention the soap thing but could not find any one post to summarize it. Could one of you knowledgable ones please enlighten me?

Even though I don't have RLS, I've been trying to follow these threads and results, too.
Sounds to me like it works for some and doesn't work for others (especially when the bar falls out of bed and the dog gets hold of it ).

Den

[Lyza]

Ivory Soap still working for me! I keep 2 bars under the Bottom Sheet. They sorta roam around ankle/calf area because thats where my RLS tends to act up. Yeah you gotta reposition them every night, but thats no biggie.

[SleepySandy]

Kathy,

Really - you aren't taking ANY meds for your PLMD and you are finding the 4 bars of Ivory soap make a difference?

Do you have RLS? My mom has severe RLS and it affects her sleep but from what I've read here RLS is when you're awake and PLMD is when you're asleep?

I know you've posted about this before but I want to be absolutely sure I have the facts straight before I pass the info on to my mom. You seem like the most ideal person to indicate if there's something to the Ivory soap thing.

I'm thinking you haven't been taking any meds for RLS / PLMD and find the Ivory soap helps. Then you had the sleep study and were moving all over the place. You expect to sleep tonight with no meds but with the Ivory soap and it will help. Do I have that right?

[kteague]

Ok, here's all I know - I have RLS and PLMD and Ivory in my bed takes the edge off my movements. The bars are under the fitted sheet and I usually have my feet against or on them. (Be kinda hard to sneak it in on someone.) Generally RLS is when awake but it can happen during sleep. PLMD happens almost exclusively during sleep. (Have read about rare exceptions and one of my studies showed PLMD while awake.) The tech last night said I showed both RLS and PLMD.

I have been off Mirapex for several months now. Although I can tell from my daytime sleepiness and leg pain that the quality of my sleep is not good, I am not miserable with the leg movements waking me up repeatedly since I started using the soap in my bed. I do expect to go to bed tonight and not be utterly miserable like I was last night at the sleep study.

Why it helps some and not others, or why it works at all is a mystery to me. I am going to volunteer for my doc to do another study at his expense with the soap for comparison. I doubt he'll take me up on it, but I'll offer.

I will see my doc mid next week and will report back then.

Kathy

[SleepySandy]

I have been off Mirapex for several months now.

Why? Because of the new doctor? I kind of remember you mentioning something about that. There's no way my mom could survive off Mirapex and it doesn't even completely help. I know your symptoms are really, really bad so how are you able to function without any meds?

Do you have symptoms when you're not sleeping? My mom's legs start acting up around 8pm and she gets all fidgety and rubs her hands along her thighs and does that thing like when you bounce a baby on your knee. It's not uncommon for her to wake up in the middle of the night because of her legs and need to take a bath to try to relax them.

Be kinda hard to sneak it in on someone.

Oh, I was just going to tell her about it. I'm in Seattle. She's in Michigan. No sneaking intended even if it were possible.

But now I'm thinking - maybe sneaking IS possible. Just shave the soap into thin layers and lay them under the fitted sheet . Do they make unscented soap? The scent would give it away.

I am going to volunteer for my doc to do another study at his expense with the soap for comparison. I doubt he'll take me up on it, but I'll offer.

That's awesome. How funny would it be if he took you up on it. Didn't you post something about video taping yourself at one point? Maybe you should do that with the soap. That might make him more inclined to explore the soap angle.

[kteague]

I first considered going off Mirapex due to side effects (addictive behaviors) and stomach distress the whole time I'd been on it (4 or 5 yrs), but was waiting on an alternative. Then I had to quit working and was waiting on money. No money was in view so in about July 2006 I just didn't refill the script.

I really don't recommend anyone else doing that. It should have been gradual. Since I obviously have some short circuits in my wiring, I shouldn't have put myself thru that. I went to my neuro doc a few months later with some bizarre symptoms, and he said it was due to abruptly going off the Mirapex.

When on Sinemet in prior years, I developed a glitch where I would think about something (not with intention to do it at that time) yet my hand would perform the movement I thought about. For instance, if I thought "I need to call my mom later" my hand would reach for the phone. This and other involuntary movements are why I was switched to Mirapex.

After going off Mirapex, the glitch that appeared was a connection between what I see and what I feel. Whenever I observed anyone else's point of impact, I felt like I'd been kicked (between the legs no less). This is hard with a bunch of rambunctious grandkids jumping around. I've had to monitor what I see on TV and turn my head a lot. It has much improved, but not totally gone away.

While taking Mirapex I thought my PLMD had "progressed" since the movements had become wild flailings. The medicine's time of effectiveness had deteriorated to maybe 2 to 4 hours then the wild flailing kicked in . The longer I was off the Mirapex, the less wild were the flailings. I was actually getting better rest than on the med. Till the old original kicking and repetitive cramping began to build in intensity. I went to my neuro to see what we would try next, and he referred me to the Movement Disorder Center, which is where I am in the journey now. By the way, the compulsive behaviors improved also, and I stopped biting my nails without even noticing it.

This is probably much more than you asked for, but this is the story. I'm glad not everyone has the problems I had with the meds. In the beginning both Sinemet and and Mirapex were helpful, it just didn't last for me.

My new doc wanted me to stay off all meds until they knew exactly what they were dealing with. I never intended to tough this out this long. I'd been "sleeping" about 15 hours of every 24 in snatches here and there. Hence me trying the soap when I saw it mentioned.

Hadn't thought about a new home video, maybe I will pursue that, depending on what the doc says.

Kathy

[littlemo]

wow this is interesting!!! so you wedge your ankles inbetween bars of soap!!!!

Please be aware that RLS and PLM's are an indication of reduced Iron. supplementing you diet with with Ferrous with help but you should get your DR. to check this, menopause triggers this symptom! as does pregnancy and the symptom is alway worse when tired.
mo

[SleepySandy]

Kathy,

Thanks for all of the info about your meds. My mom actually did a clinical trial for a med that worked fabulously for her. Unfortunately, the drug company decided it wasn't different enough than other meds on the market to pursue development. She was bummed when I found that out because she had been waiting for it to hit the market - she was going to switch as soon as she could.

Please continue to keep us posted about your progress with the new doc.

Sandy

[kteague]

Hi. If anyone else has access to the video I shared in private, PLEASE do me the courtesy of deleting it. It was never intended for public viewing. The photobucket image has been deleted. If there were any questions that needed to be answered in the last two messages, please repost them. Thanks.
Kathy