No progress yet

Whether new to RLS/WED 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.
legsbestill
Posts: 315
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: No progress yet

Postby legsbestill » Tue Nov 15, 2016 10:13 pm

Yes; I have a similar recollection of Dr. Earley's webinar.

leggo_my_legs
Posts: 121
Joined: Sun Oct 16, 2016 12:29 am

Re: No progress yet

Postby leggo_my_legs » Wed Nov 16, 2016 6:03 am

Thanks guys!

I found out today apparently there was a "misunderstanding" when my doctor and I called my insurance separately to inquire if preauth is needed for an in lab sleep study. They claim to have been assuming when we asked about sleep study that we meant home sleep study, so they said no preauth was needed. So I just got a $4,000 bill for my in lab sleep study. Also I had the study Oct 5 and I still don't have my new machine!!!

Insurance says they will review the in lab bill retroactively but they need my sleep medical records AND my psych records!!! I was livid. What does that have to do with anything? They said it was "routine" because one of the exceptions for an in lab study is if people have a psychiatric disorder and wont be able to keep the electrodes on at home.

I told them that was an invasion of my privacy. I told them the reason why my MD wanted to do the in lab and not the home test was because I've never had an in lab test and she wanted to rule out the very thing I've been diagnosed with. So now I have to file a written appeal to the insurance company on their denial, to protect my rights. What a headache when you're only trying to breathe and sleep at night.

Then, they mailed the request for records to a corporate PO box where she will never get the request. So I had to call her and ask her to send the records. But I'm not releasing psych records without a fight, not when there's the already reasonable justification for the study.

ViewsAskew
Moderator
Posts: 14584
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: No progress yet

Postby ViewsAskew » Wed Nov 16, 2016 7:11 am

This insurance stuff in the US...don't get me started or the other mods will have to kick me off for the very point and unpolitic things I would say. Grrrrr.

I absolutely empathize and would be LIVID if I were you. Not that that helps anything, of course, but it is maddening. I hope your appeal works.
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.

badnights
Moderator
Posts: 4317
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: No progress yet

Postby badnights » Tue Nov 22, 2016 10:00 am

That insurance stuff is very scary. I admire your willingness to expend the energy to defend what's so obviously right.

Backtracking a little, legsbestill you;ve mentioned the alerting effect of the opioid you're taking. You;re certainly not alone with that experience, even though it's totally contrary to what doctors expect. I dealt with it (eventually) by starting zopiclone/Imovane (a mild hypnotic i.e. sleep aid). For a couple of years, zopiclone seemed to be the most innocuous of all the meds I was taking, but eventually I realized that my lingering daytime grogginess was probably a side effect of the zopiclone. So I cut it in half ,from 7.5 mg to 3.25 mg. It was pretty hard to feel sleepy on that dose, though, so recently I added in 75 mg of pregabalin/Lyrica. I can't take that daily because I'm afraid it will mess with my mood (I had bad experiences with gabapentin, and some hints that Lyrica might have the same effect), so I take it only 5 nights of 7.

All this to say, you might eventually decide it's worth trying a sleep aid, whether pregabalin or a hypnotic. The decision will bring a new set of problems, more rounds of experimentation. But it might be necessary at some point, because it just isn't feasible to try to carry on a normal life with such profound sleep loss. I wish there was a better solution, though.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

legsbestill
Posts: 315
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: No progress yet

Postby legsbestill » Wed Nov 23, 2016 11:20 pm

Dear Badnights, thank you so much for your post about my 'alerting'. By coincidence, I came to the same conclusion regarding the problems with sleep deprivation and about a week ago I resorted to taking some of the Lyrica (pregabalin) tablets I have left over from the summer, noting that a number of people posting here take it purely in order to induce sleep/counteract 'alerting'. I have been alternating taking two or three 25mg tablets every other night. My current regime is 2mg neupro, 10 or 15 mg OxyContin and now 50 or 75 mg pregabalin. This has produced the best, most refreshing sleep I have had since coming off mirapexin in May.

For the first time since May, I feel properly normal - back to 'me' - which is fantastic. At this dose I do not find that either the opiate or the pregabalin causes drowsiness the following day, especially if I take them in the early evening rather than just before bed, although every 3 or 4 days I need to take a long sleep - about 12 hours.

So far I have not experienced the 'gloomification' I had on a higher dose of pregabalin though I am monitoring myself carefully for this - and have husband instructed to do likewise. This good patch corresponds with my iron levels increasing and it is possible that it is just a period of less severe symptoms - I recall from pre-mirapexin (pre-treatment) days that I would get periods when symptoms abated completely so it is possible that is happening again. However I do feel vague echoes of rls when I first go to bed which makes me think that the drugs are working - preventing them from being more severe and interfering with sleep.

I am carefully refraining from feeling overly excited as hope has too often been trumped by experience but I am quietly happy - as you might expect.

ViewsAskew
Moderator
Posts: 14584
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: No progress yet

Postby ViewsAskew » Thu Nov 24, 2016 6:33 am

Reading posts such as yours above is one of the reasons I keep coming here. I have had a pretty crappy couple weeks in many ways and was a bit doom and gloom at the moment. And, then I come here and things are looking up for you - you are sleeping! Not just sleeping, but sleeping WELL! So glad it's working, Hope it does for quite awhile.
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.

Polar Bear
Moderator
Posts: 6657
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: No progress yet

Postby Polar Bear » Thu Nov 24, 2016 11:03 am

I do hope your good spell lasts a long time. Ir's great to read such a post and gives hope to others that all is not always lost.
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

badnights
Moderator
Posts: 4317
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: No progress yet

Postby badnights » Thu Nov 24, 2016 11:21 am

Nice! I feel much the same way about pregabalin - cautiously optimistic that it will be good for my sleep for a long while yet.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

legsbestill
Posts: 315
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: No progress yet

Postby legsbestill » Thu Nov 24, 2016 9:45 pm

Oh Ann, I am really sorry to hear things still not good with you. I hope they start to improve.
Thank you all for your good wishes. At some stage I will start my own thread to post my experiences - rather than constantly hi-jacking other peoples'.

ViewsAskew
Moderator
Posts: 14584
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: No progress yet

Postby ViewsAskew » Fri Nov 25, 2016 8:26 am

The crappiness is a mix of many things. I am a strong advocate of civil rights and recent US developments have me very concerned :evil: , I am living between two states, they made a mistake in the infusion (long story) so it cost $1600 instead of $800 :shock: , my best friend is leaving in a few days to move to Colorado :cry: , no results from the infusion as of yet, and my family unintentionally had Thanksgiving with me :roll:. Just life, lol.
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.

leggo_my_legs
Posts: 121
Joined: Sun Oct 16, 2016 12:29 am

Re: No progress yet

Postby leggo_my_legs » Fri Nov 25, 2016 9:03 am

views, I am with you on the recent US developments :mortified. And legs, I am so happy for you!!! That is fantastic!

I popped back in to update on my little saga here. At the moment I'm doing fair to ok with alternating norco 5 or 7.5 with tramadol 75.

I did get up my guts to try the neupro. Day 1 was ok but day 2 I felt sick to my stomach and too drowsy so I stopped the trial. I don't think MD will be happy with me since in her experience people only stop it for being itchy, it's not supposed to cause the reaction I had but then, neither was anything else.

So looks like I may be trying different opioids for as long as they work. I don't see that as a bad outcome since I have chronic pain too, but I know MD isn't going to be thrilled.

legsbestill
Posts: 315
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: No progress yet

Postby legsbestill » Fri Nov 25, 2016 10:27 pm

At least you know where you are going now, leggo. And as you say - 2 birds 1 stone.

Views, without wanting to wander down the potentially divisive road of politics, I can greatly sympathize with your anxieties about recent developments and must say that being left out of family celebrations, however inadvertently, must have felt like the final straw after all you've been through recently. I hope things pick up soon.

Polar Bear
Moderator
Posts: 6657
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: No progress yet

Postby Polar Bear » Fri Nov 25, 2016 10:57 pm

Views - There are double whammies, there are triple whammies. Then there are double triples . and it's a feeling of 'what next' ???
Dips and troughs/ this too shall pass etc .... so many useless trite phrases that we often use.

I sincerely hope that life's crappiness soon takes a turn for the better.
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

ViewsAskew
Moderator
Posts: 14584
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: No progress yet

Postby ViewsAskew » Sat Nov 26, 2016 12:19 am

Thanks for all the well-wishes. As Obama recently said - we have to take the long-view. We often focus only on the right-now and forget that there is a long-game being played, whether in our personal lives, in politics, or solving the conundrum of RLS. Am reminding myself that in a few years, I won't even remember much of what happened this last month.

We keep on keeping on. And, sometimes we get lucky! And, almost always, good triumphs and diseases are cured and people find their way to love and happiness. Or at least I will keep telling myself that, lol.
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.


Return to “Just Joined?”

Who is online

Users browsing this forum: No registered users and 2 guests