No progress yet

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leggo_my_legs
Posts: 119
Joined: Sun Oct 16, 2016 12:29 am

Re: No progress yet

Postby leggo_my_legs » Mon Nov 07, 2016 11:04 pm

She responded basically saying she was aware of the role of opioids in rls and there were certain things to consider like dependency and dose escalation "if you want to go that route." She said I'd need to make an appt with her to discuss or get the meds from my PCP "if she's willing."

My take on it is that she's less than enthusiastic but maybe willing to consider it? Suddenly I'm scared to try it, maybe partly from her response, it seems kind of "cool" in tone, but that's over email so it's always hard to tell.

I find myself feeling a little like a naughty child? Not sure if that's coming from her response or me being oversensitive. I have a bit of the "why can't I's." As in, 'Why can't I just tough it out and keep trying the other meds.' 'what's wrong with me?' etc. Not a good feeling.

badnights
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Re: No progress yet

Postby badnights » Tue Nov 08, 2016 4:40 am

She has to be cautious, but at least she didn't outright say no, so it seems quite possible that she'll do it.

Your approach should probably be one of laying out all your options with her, and discussing them one by one. Go through your experiences and why something didn;t work, or how it might work. Facts and feelings are both ok but clearly distinguished from each other. Your mind should not be made up already; you need to go in anxious to find the best solution, willing to listen but also being very clear about what has happened and what is needed in terms of results. I would think it would be obvious once everything is laid out that an opioid is the best "next thing" to try, but I don't know everything ... :)
Why can't I just tough it out and keep trying the other meds.
Her email has made you feel weird guilt and whatnot. Don't let emotion kill your logic.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
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ViewsAskew
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Re: No progress yet

Postby ViewsAskew » Tue Nov 08, 2016 5:47 am

One thing that might help is an email from Dr. B. He almost always answers. If you lay out the situation - not the part about your doctor, but about your situation and what you've tried, along with the side effects. You can mention that you are wondering about opioids - or leave it out. You don't want your doctor to think you pushed him.

If the response it helpful to your cause, you could take it to your doctor. It may help. It may not. It sounds as if she is willing to talk, but not all the inclined to go there. Reminds me of a doctor I saw not that long ago.
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.

legsbestill
Posts: 299
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: No progress yet

Postby legsbestill » Tue Nov 08, 2016 10:25 pm

I can so relate to your reactions, leggo. I started out feeling quite indignantly that opiates were my entitlement when my sleep consultant refused to prescribe them (she wanted me to try neupro first and like you I was v anxious about various side effects as well as the dangers of augmentation after going through the hell of coming off mirapexin without opiates). Then when my GP (pcp) prescribed OxyContin I had second thoughts and felt really scared taking it!
Unfortunately all effective meds for this condition bring their own problems and it is a challenge to find the optimum regime. I love your attitude to the medical suggestions - you are absolutely correct - whether or not you take the meds is your right as a patient. I am so glad you are getting such good sleep with tramadol. Enjoy it!

leggo_my_legs
Posts: 119
Joined: Sun Oct 16, 2016 12:29 am

Re: No progress yet

Postby leggo_my_legs » Wed Nov 09, 2016 3:47 pm

badnights, thanks for your advice and reminders about logic. You are right. I will work on keeping my emotions in check with her. My appt is Monday. If she declines I may ask for a referral to stanford, unless she has another compelling approach.

views, thank you for that idea! I may do that after my appt with her.

legsbe, thank you!!! Makes me feel normal to know someone else has the same reaction. Did the oxycontin work for you? Unfortunately my heart palpitations came back on the tramadol so I had to stop it. Once again I wake up totally exhausted, like I want to cry, and like I don't have it in me to get to work today. I usually feel a little better after the day goes on, but my work performance, and everything else, is definitely impaired.

legsbestill
Posts: 299
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Location: Dublin Ireland

Re: No progress yet

Postby legsbestill » Wed Nov 09, 2016 5:41 pm

Hi leggo, sorry to hear about the tramadol. It sounded so good - obviously too good to last!

30 mg of OxyContin more or less completely deals with my rls symptoms which is bliss. Of course, this condition being what it is, it is not so simple as that. The OxyContin has the effect of 'alerting' me so that I lie on bed wide awake for much of the night - I actually enjoy being awake on OxyContin but I am as exhausted during the day as if I had had a rls disturbed night. Also I am really anxious about being reliant on such an addictive narcotic and it has other undesireable side effects such as a general nebulous reduction in joie-de-vivre and also a loss of libido.

In consequence I continually mess around with reducing the dose and enduring the rls or using neupro and a lower dose of OxyContin. I am really struggling to find a regime on which I actually sleep at night. At present I am not working, although am theoretically responsible as an administrator for my husband's business as well as domestic administration and looking after my teenage sons. In reality I am getting nothing done because spend so much of my days so exhausted - often actually back in bed. I had been hoping to go back to work in 2017 but not sure I could manage a 'proper' job as things stand. On plus side: my sons are very independent and also are accomplished cooks as they pretty much have to fend for themselves. Also because I spend a lot of my nights doing yoga/stretches and sometimes weights and also OxyC reduces appetite, I am slimmer and more flexible than when I was younger!

legsbestill
Posts: 299
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Location: Dublin Ireland

Re: No progress yet

Postby legsbestill » Wed Nov 09, 2016 5:47 pm

Sorry, went on prolonged discussion re my daily life really as an introduction to say you should be so proud of yourself for holding down a job with these difficulties. Try not to despair, the human spirit is an amazing thing and there is a solution out there for you and for me.

leggo_my_legs
Posts: 119
Joined: Sun Oct 16, 2016 12:29 am

Re: No progress yet

Postby leggo_my_legs » Fri Nov 11, 2016 9:01 am

Oh no, I actually enjoyed the insider's story! It was helpful and humanizing to me. I hope you, and all of us, find something that works. It's so hard!

Thankfully, I do not have a regular 9-5 job. My job is flexible. But that only helps a limited amount. I mean a lot, really, but still limited because my performance still suffers and I still feel awful.

What ends up happening is I am so tired in the morning that I get a very slow start. Well, my natural work rhythm is as a morning person. So I miss the most productive hours of the day for me. I end up starting late, like noon even sometimes, then I stop at regular time, and do this until Wed or Thurs when I start to realize if I don't get it together, I'll be working on the weekend. Again. I am grateful I've been able to do this job but it's temporary in nature and I'm not sure I can go back to 9-5, or truthfully would want to! So I need a plan B flex job in about a year when this job may end.

I try not to go back to bed because my sleep is so unrestful I tell myself I won't feel better anyway so why do it. But sometimes I can't function and have to. I stay awake on caffeine and sugar which is quite bad for me and is impacting my health for the worst.

Give yourself some credit, you sound like a great mother and wife and you are accomplishing more than you realize!

ViewsAskew
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Re: No progress yet

Postby ViewsAskew » Fri Nov 11, 2016 10:23 pm

lovely post, leggo_my_legs!
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.

legsbestill
Posts: 299
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: No progress yet

Postby legsbestill » Sun Nov 13, 2016 10:06 pm

Thanks, Leggo, it is so nice to get that affirmation. In my new reality of post-mirapexin rls, I try to feel pleased with smaller achievements but it is hard to make the adjustment.

I have the exact problem you describe - I am a morning person but find that I am so tired when I wake up (even if I have had a reasonable night which is only about one in five) that I just don't want to/can't get stuff done and by the time I get going the day is half over and my most productive time has passed before it ever got going! I read in another post that Lyrica (pregabalin) helps with deep sleep and as I have a supply of it, I am going to try it again at a lower dose, along with OxyContin to see if it helps with restful sleep. I have also re-started 2mg of Neupro in the last couple of days so that I can take a lower dose of OxyContin to avoid undue 'alerting'. The experimentation continues ...

legsbestill
Posts: 299
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Location: Dublin Ireland

Re: No progress yet

Postby legsbestill » Sun Nov 13, 2016 10:25 pm

Btw, leggo, have you been back to your pcp about an opioid?

I think you said in one of your posts that you are anxious about taking new drugs for fear of how they will affect you. I often think of that because, again, I can really relate to it - I had completely vacated the marital bed for a variety of boring reasons but was so scared about taking the OxyContin that I went back in so that there would be someone else nearby if something dreadful happened. My husband was delighted and I relish the irony that, contrary to their usual reputation of ruining lives, in my case I might be able to say that narcotics saved my marriage!

I would definitely have found it worrying taking them for the first time if I had not had someone nearby - although actually my fear would have been groundless. I was wondering if you might think of taking them at first during the daytime - maybe late afternoon - just to be sure you were happy about how they affected you. It is also worth remembering that narcotics have been around a long time and that their bad reputation comes from their addictive qualities rather than an intrinsic danger of immediate negative reaction - a convoluted way of saying that they are actually relatively safe.

leggo_my_legs
Posts: 119
Joined: Sun Oct 16, 2016 12:29 am

Re: No progress yet

Postby leggo_my_legs » Mon Nov 14, 2016 5:44 pm

Yes, I just now came from the doctor! I am encouraged by her response to me. It probably helped my case that I started to cry.

I went in with an open mind. I had a chance to ask her more questions re neupro and I feel reassured so I will try it this weekend.

I felt that we met halfway...she gave me some norco to have during the week and to experiment with. I'm not real hopeful about it though as I think I'm already seeing some tolerance. OxyContin didn't come up in our conversation. I suspect she's doesn't feel comfortable with it.

She was however open to merhadone, in fact she's the one who brought it up as a backup if this fails. I go back in one month.

Legs, it's good to feel understood re the morning person issue, thank you. I'm glad my response was helpful. Sounds like a good plan re your experiments. Your comment re opioids saving your marriage cracked me up! I could make a bunch of cracks about that but I'll restrain myself lol.

legsbestill
Posts: 299
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Location: Dublin Ireland

Re: No progress yet

Postby legsbestill » Mon Nov 14, 2016 8:22 pm

As I understand it methadone is typically more effective and at lower doses when it comes to rls (not sure about plms) so your doctor sounds as though she is on the right track. I have OxyCodone because it was the one my php was prepared to prescribe - I think there are restrictions on the prescribing of methadone here in Republic of Ireland. I am sticking with OxyCodone for now as it is the line of least resistence and is reasonably effective for me but ultimately I think I will take on the system and see if I can find someone to prescribe Methadone.

ViewsAskew
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Re: No progress yet

Postby ViewsAskew » Tue Nov 15, 2016 5:27 am

YAY, leggo!!!!
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: No progress yet

Postby Rustsmith » Tue Nov 15, 2016 10:28 am

As I remember from Dr Earley's webinar on opiates (which is available to everyone on the Foundation's YouTube channel), methadone is unique among the opiates in that it also has some effect on the dopamine receptors. That is why it seems to be more effective for RLS than the other opiates.
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.


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