Checking in, a hodge podge

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leggo_my_legs
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Checking in, a hodge podge

Postby leggo_my_legs » Fri Mar 31, 2017 7:18 am

Hi friends! Sorry it has been so long. I have been distracted by other stuff.

My sleep doc put me on norco 5 mg. I've been taking it for 3 mos. I already seem to notice some tolerance. I alternate it with tramadol. When I first started the norco, I slept like the dead. It was amazing. I woke up in the same position I fell asleep in (I didn't  know you were supposed to do that!) I also noticed a huge decrease in my chronic pain, even after the norco wore off. I had no significant pain during the day, whereas before I was popping tylenol like candy due to chronic pain, which I guess was due to no restful sleep!

I know I'm slowly becoming tolerant because I wake up in a bit of pain now and feel less rested than before. It is disappointing because I didn't do well on the dopamine drugs.

Went to sleep doc today and she launched into her litany about all her bad experiences with patients and opioids in the past and how she's not going to do dose escalation etc.

I reminded her I wasn't asking her for dose escalation, I was just being honest with her about what's going on. Overall I like her, but she launches into the same overzealous litany EVERY time I see her. She does not seem to be dealing with the person in front of her, just relating to the taboo of opioids. It is really annoying.

Essentially she told me my only other option than norco 5 is klonopin or methadone. Seems like a bit of a leap to me but I'd be willing to try it. She said not yet though because the norco is still working well enough to try to stretch it for awhile longer.

This is a dirty, rotten illness that really affects one's quality of life...

I'm really afraid of what's going on in the US right now and am concerned about the availability of affordable healthcare in the medium to long term. I'm also concerned about opioids being demonized even more than they are now.  I say all this not because I want to get into a political debate. But because as someone with this condition, these things are weighing heavily on me and I'm scared. I worry what if the trucks stop running and we can't get meds. Not like you can stockpile them because you can only get them a week before you're due, etc.

I just got done with a **5 month battle** with my insurance company to cover my in lab sleep test, then to let me buy rather than rent my cpap machine. Essentially, I had to send 3 separate certified mail return receipt grievances to get them to follow their own policy! Ridiculous. I did finally prevail though.

Anyone else with sleep apnea creeped out that these cpap machines send electronic compliance reports to your doctor? I use my machine but I consider it an invasion of my privacy. Would you believe I would get phone calls from the equipment provider saying good job I see you are using your cpap 7 hours a night. I told them stop calling. Do I have the right to take the d*mn chip out of the machine?

Ok that's enough out of me. For now. :shock:

ViewsAskew
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Re: Checking in, a hodge podge

Postby ViewsAskew » Fri Mar 31, 2017 6:33 pm

OMG - the sleep machine thing! What I and my husband went through to buy his was maddening. Until we opened a case with the Better Business Bureau (a US thing - no idea if other countries have such an entity), they wouldn't talk to us, sent us to collections, and on and on.

Per the tolerance, if there is one thing I wish i could redo about my 12 years on opioids, it is to have dealt with tolerance better. You are not going to resolve it with another opioid, in my experience. You have to take a break with something else. For me, after much hand-wringing, it was DAs. I never take them for long, but once I started, I was able to completely stop the tolerance. I do not love what I do or how i take the drugs. But, it solves a very real problem and is as good as it gets, I suppose.

On the CPAP and the chip....we have never received the calls...wonder if IT husband did something...
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.

Rustsmith
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Re: Checking in, a hodge podge

Postby Rustsmith » Fri Mar 31, 2017 8:05 pm

leggo, I bought my machine from an online CPAP provider, so the machine regularly calls the manufacturer, but the manufacturer doesn't know what to do with the data because they don't know who my doctor is. If they went to the trouble to trace my CPAP prescription, then they are still out of luck because I fired that doctor a number of years ago.

As for the chip, my machine has an "airplane mode" option in the patient menu. If you turn this on, it turns off the machine's cell phone so that it cannot call out. The machine will continue to remind you to turn airplane mode off each morning, but that is simply a click of the button to ignore the reminder.

And I completely agree with your position, the data belongs to me and as long as I don't have to worry about compliance for an insurance company to pay a rental fee (yet another major scam), it isn't anyone else's business what I do unless my doctor specifically asks for it. The one time that she did ask, I brought in my chip, and then she found out that she didn't have any way to read it. :lol:
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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
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Re: Checking in, a hodge podge

Postby leggo_my_legs » Sun Apr 02, 2017 6:58 am

Ann, I'm glad the DAs help with the tolerance. I tried a few and they all made me feel rotten. I just didn't have the patience for them.

I never got the cpap calls until I started using Bennet Medical for the supplier. They're just watching out for their bottom line, ie if the patient stops using it, the ins won't pay and they'll lose money. Money, money, mooonneey.

Steve, thanks for the airplane mode info. As soon as they pay for my machine I'm going to disable the compliance data! I don't know why they can't rely on patient self report.

Speaking of patient self report, I was interrogated by the pharmacist today for getting my norco from a different doc than my tramadol and ativan. Seriously? Having 2 different docs (not, say, ten) is enough of a flag for them to ask me to explain myself. I don't even have an exciting DEA report. I wish I'd have given the pharmacist some grief back and gone on a rant about how tired I am as a valid pain patient of getting interrogated every time I pick up meds. Next time!

Both of you are angels for reading my rant! Thank you. :)

badnights
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Re: Checking in, a hodge podge

Postby badnights » Sun Apr 02, 2017 9:51 am

I read it too leggo - - Ann and Steve had already replied, so I didn't. I bet lots of people read it.

Multiple (even two) doctors is one of the warning signs they're supposed to look for to identify people with addictions. Too bad they don't train staff on how to interact with people who don't have addictions! When I read stories like this, I always think how lucky I am. I hate that I have to pick up once a month, see the doctor once every 2 or 3 months, but at least no one gives me a hard time. Mostly.
Beth - Wishing you all restful sleep tonight
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Polar Bear
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Re: Checking in, a hodge podge

Postby Polar Bear » Sun Apr 02, 2017 1:51 pm

leggo - many members will have read your post, not all members make comment, some members post occasionally.

I also had read your post.

Like badnights, I also have to pick up once a month, see the doctor every 6 months.
Fortunately have had no attitude from my doctor or pharmacist. Actually, I'd like to move to a doctor a little closer to home but know that my current GP will work with me as best he can. Even if I go see a prospective new GP and talk to him about RLS and the continuation of my current treatment, how do I know that he (or a colleague) won't suddenly decide to assess my medications - and find fault ??
Betty
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Rustsmith
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Re: Checking in, a hodge podge

Postby Rustsmith » Sun Apr 02, 2017 4:43 pm

leggo - your rant is an all too common for those of us on opioid meds. Be thankful that you can get your prescription filled at a local pharmacy (even one with an attitude). I had my valid, legal prescriptions refused at so many local pharmacies in my town that I gave up and now use mail order. One store told me that filling my prescription would get them in trouble with the DEA. Another confirmed that he could tell from records on the internet that I had already taken it to a couple of other stores and been refused. He refused because opioids are not on the list of approved meds for RLS, as if he was my doctor! I am now waiting for blowback from my mail order pharmacy on my latest script for something similar to your experience. My doctor wasn't available to sign my latest prescription, so another doctor in the clinic signed it. So I am waiting on questions of "doctor shopping" for narcotics.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

legsbestill
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Re: Checking in, a hodge podge

Postby legsbestill » Sun Apr 02, 2017 9:49 pm

Hi leggo, I too read your rant. I posted a long comment which seems to have disappeared into the system. It was in the middle of the night two nights ago and I can't remember much of it. I love your 'dirty rotten illness' description. I agree with Ann who is usually prescient on these issues that you might be better to try to find a means to temporarily reduce your norco to overcome dependence rather than increasing the dose. I appreciate this is easier said than done but of you managed it and clandestinely kept your existing script you might be able to build up a little stock of norco - I draw great comfort from having stashes of various meds. Maybe you could try Kratom to bridge the gap?

badnights
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Re: Checking in, a hodge podge

Postby badnights » Mon Apr 03, 2017 4:11 am

I agree with legsbe and Ann. Even tho you've had bad experiences with DAs, they might be your only way of keeping tolerance at bay. Their side effects might be totally different or non-existent if you use them differently - every few days or couple of weeks, to break from the norco.

I wanted to comment on your doctor's comment that the only place to go was klonopin or methadone. First, you're right, there are some other opioids she could try you on first that wouldn't be such a pain to refill, but as it goes, methadone would be an effective solution. Second, I cringe that she would think Klonopin (clonazepam) would take care of your symptoms. Although some people on this board have indicated that it controls their symptoms, most of us who have used it agree that it makes us sleepy but is totally inadequate to deal with the WED/RLS, so we end up stumbling around to deal with the WED while groggy and brain-sleeping, which is dangerous and extremely unpleasant. Relaxation triggers the symptoms, after all.

So I hope you choose the methadone if you have to make that choice. Though I'd rather she were more flexible about trying other things.
Beth - Wishing you all restful sleep tonight
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leggo_my_legs
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Re: Checking in, a hodge podge

Postby leggo_my_legs » Mon Apr 03, 2017 5:12 pm

Thank you for your thoughts and reassurances. I forgot to say, I have PLMS rather than traditional WED. Methadone is high on my list to try, but I worry because I'm in my mid-40s and what if that stops working?! I realize I may have to try the DA's again even just for "break" meds. I really didn't like them. I'm lucky my doctor believed me that they made me feel rotten.

Rustsmith, your pharmacy ordeal sounds awful. What a bunch of conjecture and poorly trained people. It seems that even just taking opioids has become taboo. For some reason, I don't think we can use mail order pharmacy on controlled meds here in CA. :cry:

It is a wonderful idea for pharmacies to have training on people who DON'T have addictions. What's really pathetic is that even most doctors don't seem to have training on how to recognize addiction vs pain patient. My doctor was griping about how the pharmacy is always faxing her. She was citing that as a reason why she isn't going to prescribe me multiple different meds.

Said pharmacist actually asked me, "Do your doctors talk to each other?" Geez. I told him that they do (true) but I fully expect him to fax them. Talk about being treated like a child. Maybe my CPAP machine will start analyzing my breath and calling the pharmacy as well soon?!

Polar Bear, yes it is a bad feeling to have to be concerned that the medication rug might be pulled out from under you at any time. It really seems like doctors aren't listening to patients so much anymore. We are taking a step back in time from the emphasis on good bedside manners and returning to doctor (pharmacist, ins company--in the USA anyway--) knows best.

Badnights, I know what that stumbly restless legs/sleeping brain feeling is! Because I get it when I take Benadryl. Which I don't do anymore since it's on the list of bad meds and I have experienced that.

Legsbestill, like you, I derive comfort from having extra meds at home. That is a direct result of not being able to get our needs met (or fearing the same) through standard means ... sad that it has come to that for just regular people.

Thank you all again for your wonderfulness!

Rustsmith
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Re: Checking in, a hodge podge

Postby Rustsmith » Mon Apr 03, 2017 6:06 pm

leggo, if you have PLMS and not WED then there is a chance that methadone may not do a lot for you. From what I have seen, there is even less research on PLMS than there is on RLS. I cannot remember where it was that I saw it, but it has been my understanding that methadone is not effective for PLMS. I have both RLS and PLMS. Last year before I started taking methadone, I was up to 1mg pramipexole to try to keep marginal control of my RLS. The day that I started methadone my doctor dropped my pramipexole to 0.25mg. She said that she wants me to stay on the pramipexole to keep my severe PLMS under control. In a sleep study last fall, I had zero PLMS albeit that I also only slept for about 3 hrs that night.

Also, methadone is a long acting opioid. Since your issue is PLMS, if (big if here) you need to switch to an opioid, one of the shorter acting ones might be preferable and would carry less of the stigma with your pharmacist that methadone carries.

As for my mail order pharmacy, my medical insurance requires me to use them for anything that has more than one 30 day refill. And like any other major corporation that doesn't have to see their customers face-to-face, they are totally uncaring and cannot do anything other than their normal routine.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

ViewsAskew
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Re: Checking in, a hodge podge

Postby ViewsAskew » Tue Apr 04, 2017 3:04 am

Yeah, so little research on PLMS.

That was what i started taking DAs for. The augmentation gifted me with daily RLS....grrrrr. Now I treat both. No question that the DAs do stop me moving. But, methadone, for me, does, too. I do this mad back and forth between them, but I agree with Steve's doc - my very best sleep is with a teensy bit of pramipexole (around .06 mg) and an average dose of methadone (7.5 to 10 mg). If I didn't have to fight side effects, augmentation, and tolerance, I would take this every day without question.
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
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Re: Checking in, a hodge podge

Postby leggo_my_legs » Thu Apr 06, 2017 11:56 am

Rustsmith wrote:And like any other major corporation that doesn't have to see their customers face-to-face, they are totally uncaring and cannot do anything other than their normal routine.


I think a lot of the major corporations that *do* see their customers face to face are the same way too. :roll:

I'm on a short acting opioid (norco), questions of possible tolerance. Trying to make it last as long as possible. It's weird as you get older, the shift goes from disease prevention to said disease not killing you and dying by some other means, if that makes any sense. Like thinking long range of what meds I want to preserve, don't want to try methadone too early etc. I'm 45...hopefully have some good decades left in me.

Views, that totally sucks about getting RLS after PLMS! I wonder if maybe you were going to get the RLS anyway. I think I tried pramiprexole but I'm not sure of the dose. I will probably have to revisit the DAs at some point. :(

legsbestill
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Re: Checking in, a hodge podge

Postby legsbestill » Thu Apr 06, 2017 5:42 pm

45 is young - very young

ViewsAskew
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Re: Checking in, a hodge podge

Postby ViewsAskew » Thu Apr 06, 2017 11:50 pm

leggo_my_legs wrote:
Rustsmith wrote:And like any other major corporation that doesn't have to see their customers face-to-face, they are totally uncaring and cannot do anything other than their normal routine.


I think a lot of the major corporations that *do* see their customers face to face are the same way too. :roll:

I'm on a short acting opioid (norco), questions of possible tolerance. Trying to make it last as long as possible. It's weird as you get older, the shift goes from disease prevention to said disease not killing you and dying by some other means, if that makes any sense. Like thinking long range of what meds I want to preserve, don't want to try methadone too early etc. I'm 45...hopefully have some good decades left in me.

Views, that totally sucks about getting RLS after PLMS! I wonder if maybe you were going to get the RLS anyway. I think I tried pramiprexole but I'm not sure of the dose. I will probably have to revisit the DAs at some point. :(


I had it before, too, just very very mild. Once or twice a month, get to sleep in 5 minutes of stretching most times, etc. So, I wasn't unaware...just wasn't worried about it. To go from that to 24/7 RLS because of augmentation...that really, really, really sucked. Especially because I hadn't slept for years because of the PLMS. Alas. Sometimes life doesn't work as you expect. I am only in mid-fifties, so I get where you are coming from. I was in my early 40's when I started the DA for the PLMS - it's been a crazy ride since.
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.


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