is it possible to find a long term solution

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
sleepdancer2
Posts: 212
Joined: Sun Jun 29, 2014 7:46 am

Re: is it possible to find a long term solution

Postby sleepdancer2 » Fri Mar 11, 2016 10:48 am

I too am grieved that those suffering so much have to fight so hard to get the needed help. I've been through a lot of meds too, and been accused of doctor shopping when my insurance changed and I could no longer go to the same doctor. Was treated very badly by the new doctor. Even with my treatment of choice for my limb movements, I could not get help from a physician. I wanted to try using a TENS Unit before resorting to stronger meds. My ordeal with augmentation on Mirapex made me gun shy of any med's potential side effects. My sleep doctor wouldn't order a physical therapist to help me with the unit because this is not a recognized treatment for PLMD. The ortho doctor who had given me the unit for back pain would not ask a therapist to work with me as RLS/PLMD was not his specialty and he was not treating me for this diagnosis. None of his therapists had heard of this approach and had no idea where to start. So I was left to experiment on my own, resulting in a few weeks of trial and error hell. Fortunately I settled on how to use it to best help myself, and I've been able to manage my legs at night solely with the TENS for about 5 years. My results were confirmed by my sleep doctor through followup sleep studies. Thankfully I can get a replacement unit and supplies online without a prescription. I shudder to think about how hard it would be to have to find a doctor both capable and willing to work with me to find new solutions.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

ViewsAskew
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Re: is it possible to find a long term solution

Postby ViewsAskew » Fri Mar 11, 2016 10:17 pm

We could write a book about these stories...and maybe we should!

I'm trying to think of things I can do now that my teaching gig is coming to an end. Maybe I should go back to my writing roots and shop a few articles to magazines about what people go through to get the help they need. It can't be only us that go through this...
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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Location: Pueblo, Colorado

Re: is it possible to find a long term solution

Postby Rustsmith » Fri Mar 11, 2016 10:55 pm

Now might be the time for something like that, especially in light of the NPR spot a couple of weeks ago. Something needs to be done to get the pendulum to start swinging back the other way. I listened to the NPR spot, which had good info, but the questions at the end were all "Yeah, but what about addition ..." or "what about the abusers, ...".

I keep thinking about one of our members a couple of years ago, I think it was in Indiana, where he was subject to surprise inspections at home to count pills as well as monthly urine tests. There have also been a couple of our members who had to have monthly drug testing, but their insurance wouldn't pay for it.

As was pointed out today in a different thread, the rules vary from state to state, but they are constantly changing and some are getting to the point where those with legitimate needs are being frozen out of access.

So maybe some sort of publication describing what it is like for those with legitimate needs might be helpful. I won't turn the tide immediately, but the change has to start somewhere.
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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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: is it possible to find a long term solution

Postby ViewsAskew » Sat Mar 12, 2016 2:23 am

A recent story I heard privately - not sharing names because of that - was about testing.

The person was required to undergo a test at an annual visit. The nurse explained that the cost was around $2000.00 US (!!!!!!!) but that if insurance didn't cover it, to simply ignore the bill or to say that it wasn't affordable and to pay, say, $100, and explain it was all that the person could afford. The nurse said that they firm would stop bothering for payment after two of three attempts.

It seemed so strange to me that a firm would simply stop asking for the money after a few attempts. I wondered if that was some state provision - I am not sure what state it occurred in. I also didn't find out why the doctor was testing after not doing so - state law or doctor covering for some reason? it would be interesting to compare the laws, too.
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.

mh380
Posts: 20
Joined: Sat Aug 22, 2015 5:15 pm

Re: is it possible to find a long term solution

Postby mh380 » Tue Mar 15, 2016 9:02 pm

Joanie,
That's a terrible situation and I know I'd be really stressed if I were in your shoes. I wonder if you could educate your doctor a bit about opiates and RLS if you bring a copy of Clinical Management of Restless Legs Syndrome (second edition) to your appointment. Chapters 9 and 10 have some good information, such as that opiates are recommended if DAs and anticonvulsants aren't tolerated. The description of methadone on pp. 206-208 includes a rundown of the rationales for why RLS doctors often prefer that drug, despite the stigma associated with it.

Rustsmith
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Re: is it possible to find a long term solution

Postby Rustsmith » Tue Mar 15, 2016 9:56 pm

mhalusic, thanks for the reminder about the book. I finally get to see what may be my new doctor tomorrow after waiting many months for an appointment. Although I am a textbook case for methadone, I will not know whether that is going to be an option until I get to talk with her. I have been preparing all sorts of things to take with me, but I guess that I am so sleep deprived and stressed that I had forgotten about "The Book".
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.

Joanie60
Posts: 194
Joined: Thu Mar 15, 2012 2:48 pm

Re: is it possible to find a long term solution

Postby Joanie60 » Wed Mar 16, 2016 1:11 am

mhalusic, the scary part of my situation is that my Doc is in the same practice as ONE OF THE AUTHORS!!! With that said, you've given me excellent advice and I will follow it :-) I keep "The Book" handy and will copy pages 206-208.

Steve, good luck tomorrow! Please let us know how it goes :-)

Joanie

Rustsmith
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Re: is it possible to find a long term solution

Postby Rustsmith » Thu Mar 17, 2016 1:17 am

Joanie, see the summary of my very successful visit today at

http://bb.rls.org/viewtopic.php?f=4&t=9556&p=83723#p83723
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.

Joanie60
Posts: 194
Joined: Thu Mar 15, 2012 2:48 pm

Re: is it possible to find a long term solution

Postby Joanie60 » Thu Mar 17, 2016 1:40 am

Steve, I am THRILLED for you!!! I mean really really happy. I had only slight problems with methadone in the beginning (I think slight nausea?) and it WILL go away. I found Activia yogurt helps keep things moving. The best part in the whole wide world is the long half-life. I take 10mg at 10:00am and 5 mg at 5:00pm and that is it. No 4 hour swings up and down and up and down. I didn't realize how much that annoyed me with Percocet until I came off of it. In the beginning of this journey I was on 0.25 mg ropinerole and augmented my way up to 3mg and was a complete zombie during the day. After a run thru the other classes of meds, and side effects, iron infusion, several clinical trials, etc, I thought Percocet was the answer to all my prayers. And it was, but methadone is so much better, for me, because of the level relief.

With that said, seldom does 3 hours go by without me aware of my RLS but I have had three plus years of stability on Percocet and now over a year stable on methadone.

I am sure you were very discouraged with the three month wait for appointment but I bet you are feeling it was worth it now!! I came off ropinerole with the assistance of Percocet and Neurontin but looked thru my emails to my old doc from that time and I don't see any major complaints about the withdrawal process. Matter of fact, I gained a pound a day on Neurontin so I got off that pretty fast, so I guess the percocet was the main "crutch" to getting off DA. I predict smooth sailing ahead for you! About damn time, huh??

Congrats again and thanks for reminding us we are our own best advocates!

Joanie

Rustsmith
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Re: is it possible to find a long term solution

Postby Rustsmith » Thu Mar 17, 2016 2:28 am

Thanks. It is interesting that you wanted off of Neurontin as quickly as possible due to weight gain. I cannot gain weight for any reason and the only non-negotiables for me in my discussion today were that the DAs had to end and that I was not willing to completely give up my gabapentin. In addition to helping me sleep, it has been a miracle drug for reducing the number and severity of the migraine headaches that I experience. RLS is uncomfortable and I suspect that severe, untreated RLS could drive us insane (or at least to suicide), but migraines are a completely different matter. When I was getting the really bad ones, I knew that I wasn't going to die during a headache because that would have brought an end to the pain. :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.

Joanie60
Posts: 194
Joined: Thu Mar 15, 2012 2:48 pm

Re: is it possible to find a long term solution

Postby Joanie60 » Thu Mar 17, 2016 2:38 am

That would have been too easy, huh??

RLS is so weird. Mine is not "painful" exactly, but without meds (when I forget and run a couple hours behind) I end up in unrelenting tears. The misery...oh the misery. I know I am three hours from relief. Then I think of people in real physical pain (migraine, for example!!) and tell myself to buck-up. But RLS misery is very very real.

So glad you have found a double winner...RLS and migraine meds in one! Now top off with methadone and there will be no stopping you :wink:

Joanie


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