Nice to find you. I have had RLS for forty five yrs

Whether new to RLS or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
badnights
Moderator
Posts: 5870
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Nice to find you. I have had RLS for forty five yrs

Post by badnights »

Sometimes I wish I had a broken leg or something else that could be *Seen*
Oh so true! I've said that a million times!

If your doctor is actually LEARNING, then you have hope, and may not need to shop around. Take in some carefully selected papers, if you can print them, with parts highlighted that you think are relevant. If you can 't print them, copy out the citation, or the web address, and ask him to look at them and get back to you about what he thinks of them.--- I've probably said all this to you before, sorry.

I am concerned about the ropinirole. Reducing as much as you can is good, but you are not necessarily going to experience a reduction in WED, just in the side effects of ropinirole, until you quit it completely, which as you know will be hellacious without your doctor's informed assistance. So I hope it happens!

I think a real naturopath would have a lot to offer, but all the ones I have encountered include homeopathy in their bag of tricks, and for me, that classifies them as charlatans or irreparably ignorant. Homeopaths will readily admit that the solution they give you is so diluted it cannot possibly contain even one molecule of the "curative" substance; they explain that it works anyway because the water molecules "remember" the substance. Which is blatant nonsense; in effect, they are claiming it works by magic. If only they would concentrate on natural remedies that have proven effects, or at reasonably might have provable effects, instead of bunkum.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

EeFall
Posts: 1529
Joined: Thu Jan 03, 2013 4:11 am
Location: Washington State, USA

Re: Nice to find you. I have had RLS for forty five yrs

Post by EeFall »

Oceanwalker,

It is good to see all the help you have been getting on here. It is a remarkable place for sure and they have all helped me too.

I haven't had a chance to look around the site much for the last few months, too much into my own WED problems I am sad to say, but now things are getting back to normal again for me, at least for the WED/RLS. I also wish WED were something others could see because others, even family members, do not realize how much of our lives are driven by the disease.

Sleep deprivation alone can change our personalities, and then the medications we take can change them even more. Often I have thought that I should rig the house up with cameras for when things are going bad and I am pacing all night, falling asleep on my feet, and walking into walls. Maybe a YouTube video of that would put a little light on RLS/WED.

I am just glad there is a forum like this with others who have it, know how it is, and can help or share their experiences. When I have been very down this place has lifted me up. I wish you the best and that you will get WED under control again. The nice thing about WED (if there is anything nice about it) is that there is always another way to control it when something stops working.

badnights
Moderator
Posts: 5870
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Nice to find you. I have had RLS for forty five yrs

Post by badnights »

eefall wrote:Often I have thought that I should rig the house up with cameras for when things are going bad and I am pacing all night, falling asleep on my feet, and walking into walls. Maybe a YouTube video of that would put a little light on RLS/WED.
I have had the same thoughts, and gone so far as to acquire cameras. I would like to put together an educational thing, have some ideas but no time. Also no videos, because I was waiting til I went off meds. If you take videos, let me know? Toss ideas around.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

rthom
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: Nice to find you. I have had RLS for forty five yrs

Post by rthom »

badnights wrote:
eefall wrote:Often I have thought that I should rig the house up with cameras for when things are going bad and I am pacing all night, falling asleep on my feet, and walking into walls. Maybe a YouTube video of that would put a little light on RLS/WED.
I have had the same thoughts, and gone so far as to acquire cameras. I would like to put together an educational thing, have some ideas but no time. Also no videos, because I was waiting til I went off meds. If you take videos, let me know? Toss ideas around.



What kind of looked a year ago but it seems around here they just don't know or have much that can both photo and sound a moving object for less that a few thousand a piece and even then they are not sure it will work, :-(

ViewsAskew
Moderator
Posts: 16259
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Nice to find you. I have had RLS for forty five yrs

Post by ViewsAskew »

It's really hard to do low-light video. You need really expensive equipment. Most of us just don't have that kind of stuff.

That said, I know my hubby has a little video camera that is excellent in relatively low-light. It wasn't that pricy. Not sure it's good enough for something like this, though.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

EeFall
Posts: 1529
Joined: Thu Jan 03, 2013 4:11 am
Location: Washington State, USA

Re: Nice to find you. I have had RLS - Video Camera aside

Post by EeFall »

I was thinking about something like this, instead of investing in expensive equipment purchase something like this:

http://www.amazon.com/Swann-SWDVK-82550 ... ra+systems

In case you can't see the link it is on Amazon and is a:

Swann SWDVK-825508 8-Channel Digital Video Recorder with Smartphone Viewing and 8 x 600TVL Cameras

It is under $500 USD (4 camera models are about $250) and records video in both color and infrared. The infrared comes on automatically when it isn't light enough. They are surveillance cameras mostly for the outside of a residence but one could hook them up inside the house to watch someone with WED go through 24 hour period. Actually the hard drive that comes with it can record 60 days from each of the 8 cameras. Pretty amazing really.

It would pretty much cover our whole place (except for bathrooms of course :lol: ). Some rooms probably wouldn't need to be covered though so you could have a couple of cameras looking two different directions in 4 rooms. The major problem would be setting it up with all the wiring required. It would just be temporary though and then it could be put up outside afterwards or sold.

Then there would be editing the 8 cameras of data. You would have to go through, for a 24 hour period, 8 days of digital info and cut it down to maybe 45 minutes for the entire presentation. Most YouTube stuff isn't much longer than that and you don't want to bore your audience.

EeFall
Posts: 1529
Joined: Thu Jan 03, 2013 4:11 am
Location: Washington State, USA

Re: Nice to find you. I have had RLS for forty five yrs

Post by EeFall »

Also one could get the GoPro Camera which is not really that expensive for what it does.

Here is Amazon link:

http://www.amazon.com/GoPro-CHDHE-301-H ... pro+camera

This is what it is if you can't see link:

GoPro HERO3: White Edition $199.99

Let's not forget the head strap :lol:

http://www.amazon.com/GoPro-Head-Strap- ... head+strap

GoPro Head Strap Mount for HERO Cameras

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Nice to find you. I have had RLS for forty five yrs

Post by oceanwalker »

Hello Ann and Beth and Eefall:)
Thanks for all your sharing!
Yes..I know the worse is yet to come when I am off the ropinirole :( Ahh well..I will patiently wait and see ..try to do this..TrY! This is all I can do is TrY and nothing more. Give it all I have. I probably will cave :( cos this is so horrendous...but I can TrY one day at a time.

Yes Yes I too thought about setting up camera's to give *light* to WED and to show my doc but it is very expensive.
Thank God I can safely come here and feel ok to share without people judging me..Thank God I can say anything / share anything and feel safe!! I have learned so much and I thank you all.

LOL sometimes I feel like I am walking on my eyebrows hah ! Unreal how we can *manage* if you will...this constant walking, moving, stretching, etc. You all know what I mean. The pain of the body's muscles the next day. My constant fight to stay awake at times when I need to. ETC.
Yes; I wish people could see us suffer too. I know there are people out there with worse diseases etc..but we need to think of ourselves as well. All my life it's been about others ... now it's time for me. And Thank God I have a supportive husband. Thank God I have this site. Without everyone here...the postings, the shares etc. I would be in total darkness about WED.
Thank You all from my heart! huggss to all.(maybe this sounds sappy but it's the truth)

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Nice to find you. I have had RLS for forty five yrs

Post by oceanwalker »

Well ...here it is Sept. 14th. seems like one month ago I posted lol. I have been reading a lot here and it's fantastic information. Family members as well are getting educated. Not all but some..it's a great start.
My plan on totally giving up on the ropinirole didn't work yet; because I haven't tried it yet. Still on .25 approx. of ropinirole.
With the help of the dilaudid and rivotril at bedtime I am able to get more sleep than before for some unknown reason? 2 hours at bedtime/I wake up and walk around for 1 hour/back to sleep for another 2 or so hours. This is great for me. Absolutely still getting a lot of sensations during the day ..but I am doing the best I can. Developing quite the leg muscles.
Wishing everyone all the best !
Oceanwalker

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Nice to find you. I have had RLS for forty five yrs

Post by oceanwalker »

Hello ..I posted in *Need Support* as well and I don't believe I should be posting here too??
Sorry if I messed up.

I thought I had it planned well. Guess I have so much more to learn.

Well it's day six and ugh!!! Off ropinirole for 6 days. I know - no biggie- but for me it's been absolutely horrific. Have an appt.with my doc this coming Friday. That will be day nine...I believe. Anyways I don't know what to do. By that I mean I don't know if I should take a drug holiday?? or stay off of ropinirole as pre planned? I will again ask my doctor again his opinion..and I already think I have that answer. I don't see any doc's specializing in WED/RLS anywhere here or Vancouver that I can visit. Am taking gabapentic, rivotril, and dilaudid for my WED/RLS. They are just short acting and short lasting. There is no sleep anymore...just total body exhaustion type of sleep for 30 minutes or so.
I joined the Willis-Eckbom Disease group on FaceBook and it's been interesting. Helps at times when I am able to actually sit at the computer. (which is not often)
Does this *Drug Holiday* work at all?? Any help in this matter is soo totally appreciated.
Thanks to all and to all the very best
Sincerely,
Oceanwalker

Polar Bear
Moderator
Posts: 8009
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Nice to find you. I have had RLS for forty five yrs

Post by Polar Bear »

You have been off ropinerole for 6 days... and you say it is no biggie !!!! I think it is a very big biggie.
Well done. And when you get to your GP it will be 9 days. It's possible that by day 9 you might have reached the point where it won't get any worse.

Look how positive you are being, and at the stage of wondering if you should go off the ropinerole for always, or take a drug holiday.
From my own point of view, if I reached the stage of being off ropinerole I would be trying not to use it or any DA again, unless nothing else was working.
Good luck.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Nice to find you. I have had RLS for forty five yrs

Post by oceanwalker »

Thanks so much Polar Bear!!

badnights
Moderator
Posts: 5870
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Nice to find you. I have had RLS for forty five yrs

Post by badnights »

oceanwalker
I have been away, so sorry! Maybe you are posting in another thread too, but I will respond to this one. Vancouver! I was just there! Passing through - a 3-day trip on the Island, then a conference in Whistler, then a 5-day trip in Nevada. I am exhausted but happy. I managed my disease well, I caught sleep whenever I could, I didn't participate when I couldn't.

Anyway - I see from this and your other thread (yes, you should stick to one thread, unless it's about something completely different, just to help people who are respsonding) that you are on a relatively low dose of hydromorphone. I take the extended-release version, 18mg daily. You are coming off ropinirole, which makes symptoms roar through the roof for a few weeks, so I Would guess you simply don't have enough meds.

I went through six kinds of hell before I got prescribed hydromorph contin. It was prescribed initially at 9-12 mg ( I took 9 some nights and `12 other nights). Over the last 3 years I've increased to 18 mg daily (spread through the day because I was getting physical illness from mini-withdrawals once I reached 15 mg daily). This may be due to tolerance or to gradual worsening of the disease - impossible to say.

I think it's remarkable that you've taken yourse;f off the ropinirole. I realize some time has passed and you may have written more in other fora that I have not read yet;I hope you're still off the ropinirole, because once you're augmented I don't think many people manage to go back on without augmenting again, and a few specialists are thinking augmentation may create long-lasting changes for the worse.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Nice to find you. I have had RLS for forty five yrs

Post by oceanwalker »

Hello Beth and Hello Polar Bear... much to perhaps everyone's horror (strong word lol) I did finally give in on trying Mirapex. Just another DA but I do need to give it a try. If this bails...I will again go off of it the same way I did with Ropinirole. I understand once any DA doesn't work...others won't either. But!! I wanted to give it a try.
As soon a s I feel augmentation ..I will decrease immediately. Am only on the lowest dosage. May go up one and that's it.
Yes Beth I cannot receive enough proper meds (dilaudid, * hydromorph) to get me over this patch.
Here the doctors just will NOT prescribe it. They are all frightened due to addiction. This I know will NOT happen to me. Plus I am good at tapering off of medicines. I do my best with the short acting 2mg of dilaudid..but it's just not enough to get me over any patch. It was horrible. But I will endure this again if I have to.
Sent letters - emails I should state..off to sleep disorder clinics etc. Requested Sleep Disorder Specialists... not much happening there. :( Sadly... I need a doctor's referral and I am working for that. Then I will need to wait one or two years to get into the clinic. It's a lose - lose situation.
I am trying to bring forth more awareness to WED/RLS by printing off material for doctors, pharmacists, etc. Now that I am getting some more sleep. Hmmm 4 to 5 hours straight / night. I will have some energy for this.
Getting ready to write the newspaper and I requested that a TV Doctor do a segment on it. Just doing what I can and when I can. As I have other health issues.
This group has been a life saver for me ...I thank you all.
Sincerely,
Oceanwalker

EeFall
Posts: 1529
Joined: Thu Jan 03, 2013 4:11 am
Location: Washington State, USA

Re: Nice to find you. I have had RLS for forty five yrs

Post by EeFall »

oceanwalker wrote:much to perhaps everyone's horror (strong word lol) I did finally give in on trying Mirapex. Just another DA but I do need to give it a try. If this bails...I will again go off of it the same way I did with Ropinirole. I understand once any DA doesn't work...others won't either. But!! I wanted to give it a try.


I tried all the DA's after augmenting on Mirapex so I sort of did it the other way around. None of them worked though, not from augmenting though they just didn't work for me. Hope Mirapex works for you, I hope you have taken the smallest dose that works, if so you have a much greater chance of it working for a long while. I augmented on it around 2008 after taking it for several years. Then I would get off of it and try it every few months until it worked again. I did that until I would have to be off of it and get practically no sleep for a month or two to get it to work for a month if I were lucky. That was miserable to say the least and a big mistake on my part. I think it could work for you though, I hope it does.

Post Reply