Thanks for the add Rustsmith

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JoLyn
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Thanks for the add Rustsmith

Postby JoLyn » Thu Jan 25, 2018 12:58 am

Hi All ... I am a 68 yo female and have had RLS for about 15 years. I was only diagnosed about a year ago because I didn't realize this was what I have. I'm not sure if anyone else suffers from this but my symptoms include a bladder component. I can be dead exhausted and just begin to fall asleep when I feel the urge to urinate, combined with creepy crawly sensations in my legs making me unable to keep my legs still. I have to get up and use the bathroom to (try to) urinate when there is really nothing there. This can happen all night long with my getting up a whole bunch of times per night (I have never really counted but probably 20'ish times). It is just awful. I cannot sleep unless my bladder is entirely empty but then the horrible sensations will just start all over again as soon as I relax trying to sleep.

About 3 years ago I was given nortriptyline when a urologist assumed this was an overactive bladder issue. She didn't get the part about my leg movements and how I HAD to get up and move around. The nortriptyline worked for a couple of years until I stopped taking the Vicoden Rx I was taking. When I stopped the Vicoden my symptoms went crazy. I lived with that for a while then started back on Norco. My PCP then diagnosed RLS and prescribed Requip which worked perfectly for about 6 months or so. At that time I made a change from Norco to Ultram and once again my symptoms returned but not as bad. I eventually went back to taking Norco as it workes better for me. My PCP then prescribed Mirapex when I told him the Requip no longer seemed as effective. Recently I was diagnosed with Severe Obstructive Sleep Apnea and was taken of off Norco because of the respiratory issue.

It was just last night that I made the connection between taking opioid medication along with the RLS meds, Requip & Mirapex. Looking back I can now see that when I was on a combined treatment I was okay. So, right now I am taking Mirapex 0.5 mg once at night. I am in a pretty horrible way because my symptoms are very active and I am getting hardly any sleep at all. I am waiting for my CPAP machine and hoping when I start using that regularly my doctor may prescribe something like Norco to help me.

I am just beginning to understand what has been happening to me. This has been a real trial and I am not doing well at all. I also have a lot of pain with various problems like osteoarthritis, etc. I did a search on here to see if anyone else has the awful bladder issue along with RLS but haven't found anything so far. If you can help me with an understanding of what I am going through I would appreciate it so much.

I am glad to have found this group ... JL

stjohnh
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Location: Palo Alto, California

Re: Thanks for the add Rustsmith

Postby stjohnh » Thu Jan 25, 2018 1:29 am

I don't have that bladder problem, I'm a 70 year old guy, I do have to get up frequently to pee but usually a small amount comes out (big prostate=small bladder).

I mostly I wanted to check to make sure you are off the nortriptyline as it is one of the early generation antidepressants and will likely make your RLS symptoms worse.

You're on a relatively high dose of Mirapex, it is possible that you were augmenting on Requip. It would be helpful if you would tell us more about your symptoms, and the reason for saying that the Requip stopped working. You may be augmenting on the Mirapex.

Augmentation is where drugs like Requip and Mirapex stop working in spite of higher doses and symptoms worsen.

Most doctors are not familiar with augmentation, it doesn't happen except during RLS treatment. Even some sleep specialists and neurologists don't know much about it.
Last edited by stjohnh on Thu Jan 25, 2018 1:47 am, edited 1 time in total.
Blessings,
Holland

JoLyn
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Joined: Wed Jan 24, 2018 8:47 pm

Re: Thanks for the add Rustsmith

Postby JoLyn » Thu Jan 25, 2018 1:44 am

Hmmm ... I just had a phone appointment with my doctor and he wants me to increase the Mirapex to 0.1 mg at night. Holland, you say that 0.5 is a high dose but now I am to increase. This is alarming to me. My doctor also said the frequent urge to pee is a symptom of my sleep apnea and not related to the RLS at all. He explained why it only happens at night but I cannot remember exactly what he said. I am no longer taking the nortriptyline. I have been off of that for a year or more. The only medication I am taking for RLS is Mirapex.

I assumed that the Requip had stopped working because my symptoms got much worse. But at that time I had changed my pain medication too. When I am almost asleep the urge to urinate happens along with an uncontrollable movement in my legs. I cannot stop it and have to get up. It is a really awful feeling but I would not call it pain but a sensation of (hard to describe) something under my skin.

Does this make things clearer Holland?

Rustsmith
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Re: Thanks for the add Rustsmith

Postby Rustsmith » Thu Jan 25, 2018 1:45 am

JoLyn, you are welcome. We are always happy when we can help out our members.

I agree with Holland that there is a good chance that you have augmented on dopamine agonists. Please take a look through some of the info in the Augmentation forum to see if you agree. If so, getting off of Mirapex will be difficult if your PCP won't provide you with an opioid. Even if he/she will, you will need to discuss what you will do once you get off of Mirapex. Many of us have had to go to full time use of an opioid, which can be a problem with the current war on opioid abuse. If your PCP isn't very receptive of allowing you to go onto one of them full time, you might want to take a copy of the paper at this location to convince him/her that it is accepted practice (once your sleep apena issue is addressed).
http://www.mayoclinicproceedings.org/article/S0025-6196(17)30825-X/abstract
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.

JoLyn
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Joined: Wed Jan 24, 2018 8:47 pm

Re: Thanks for the add Rustsmith

Postby JoLyn » Thu Jan 25, 2018 2:02 am

Thank you Steve. I will read the info on Augmentation. I am very concerned about the increased Mirapex dose :-(

The link you have posted is what I sent to my doctor this morning. That info was what made me aware of my increased symptoms when I went off or changed my pain meds. I had previously only been given opioids for pain management.

I believe that having the sleep apnea addressed will make many things clearer for me. My CPAP machine should be here this week.

stjohnh
Posts: 546
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Thanks for the add Rustsmith

Postby stjohnh » Thu Jan 25, 2018 2:04 am

JoLyn,

Rereading you posts I now realize you are in a very difficult treatment situation. Failing Requip and Mirapex makes augmentation very likely but the sleep apnea makes opioid use much riskier (opioids depress normal respiratory drive).

Current recommendations for RLS treatment in someone who has augmented include switching to a long acting med like Neupro patches or a different class of meds like gabapentin or Horizant. Unfortunately it seems as though the success rate with those simple switches is fairly low. This means that getting adequate control of your RLS symptoms will likely require an opioid.

With your sleep apnea, you will almost certainly need a sleep specialist or neurologist to help navigate the relative problems of treatment approaches.

I suggest you call your doc and ask for a referral.
Last edited by stjohnh on Thu Jan 25, 2018 2:22 am, edited 1 time in total.
Blessings,
Holland

JoLyn
Posts: 13
Joined: Wed Jan 24, 2018 8:47 pm

Re: Thanks for the add Rustsmith

Postby JoLyn » Thu Jan 25, 2018 2:14 am

Blessings to you as well Holland. You have clarified my situation beautifully. This is all new and a steep learning curve for me. I am so grateful I found this forum because I was all on my own trying to figure this all out. I appreciate the help and advise so very much! My PCP was interested in the Mayo Clinic link I sent him and was not adverse to opioids for me, but not until I am using my CPAP successfully.

I finally feel hope and that I am on the right track!

Thank you ... JL

stjohnh
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Location: Palo Alto, California

Re: Thanks for the add Rustsmith

Postby stjohnh » Thu Jan 25, 2018 3:02 am

JoLyn,
About dealing with you symptoms now, I suggest asking your pcp to switch you to Neupro patches. This has the dual advantage of being FDA approved for RLS and is an accepted treatment for RLS augmentation. Be sure and get enough for 1-2 weeks only. Neupro is very expensive ($1000/ mo), likely dose changes will be needed and a substantial number of people have to stop it due to rashes. You don't want a whole month of an expensive med you can't use. Hopefully you have good pharmacy insurance coverage.
Blessings,
Holland

badnights
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Re: Thanks for the add Rustsmith

Postby badnights » Thu Jan 25, 2018 7:53 am

Hi JoLyn
It's absolutely dreadful, isn't it? But I suspect that you can improve your symptoms by getting off the dopamine-type meds. As the other s have said, you need to have a physician working with you on this.

I wanted to add to what they said, that you should ask for is an iron workup that includes ferritin levels (it's sometimes not included in the standard iron workup, so be sure to ask specifically for ferritin). When you get the results, ask for the number, don't accept "it's normal". The link under my name below leads you to papers you can show your doctor, if he needs convincing, that WED/RLS patients should have ferritin levels of at least 75, preferably 100, even though non-WED people are ok with levels as low as 20. The new recommendations for max dose of ropinirole and pramipexole are also there, in the Buchfuhrer paper; but you can also get those in the Foundation's Medical Bulletin which you can download if you're a member, That one publication is worth the cost of membership, it would be a good one to give your doctor.

If your ferritin is less than 100, you can supplement with oral iron but only if you're not in any danger from doing so ( eg. thyroid meds, or hemachromatosis - check with your doctor first). Take it on an empty stomach with vitamin C. I take 3 tablets daily of ferrous sulfate, each containing 65 mg elemental iron.

Consider taking up to 4000 IU vitamin D, as well. Vit D is linked to neuron health, and many of us are deficient.

It's an interesting problem, the OSA vs RLS/WED dilemma. Doctors will generally come down on the side of breathing - the theory being that nothing can be as important as breathing and the sleeping that it disrupts. But I don't think they would find it so clear-cut if they could observe just how badly WED/RLS disrupts sleep, and how impossible it is to keep a CPAP mask on while having RLS/WED symptoms. There is little point in treating sleep-disordered breathing for a patient who can't sleep. In those cases, in my non-medical opinion, the WED/RLS needs to be treated first. But give that machine a good honest try. It can work both ways - if your OSA improves, your WED/RLS will improve too. Anything that stresses the body will worsen the RLS/WED.
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

JoLyn
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Joined: Wed Jan 24, 2018 8:47 pm

Re: Thanks for the add Rustsmith

Postby JoLyn » Thu Jan 25, 2018 9:57 pm

I'm kind of shocked at what I am learning here ... I thought the requip/mirapex, etc., was the standard treatment for RLS. Now having my PCP wanting to increase the mirapex dose, wow. I just looked it up and I started with requip about 6 months ago. So only 6 months on the dopamine type meds.

Holland, do the Neupro patches have any pain relieving properties? Because of the sleep apnea, the only thing I am taking for pain is ibuprofen so I am hurting a lot 24/7.

Beth, thank you for vitamin, etc., info. I am kind of in shock right now over all of this so I will wait till after the weekend to contact my PCP about the blood work and all. Doing my 8 night sleep study was horrific because I could not lie still enough to fall asleep. Do you have OSA too Beth?

Is there a specialist that works with RLSl? I read somewhere not to go to a neurologist so now I am confused.

You all are so very helpful and I am grateful ... JL

stjohnh
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Location: Palo Alto, California

Re: Thanks for the add Rustsmith

Postby stjohnh » Thu Jan 25, 2018 10:24 pm

JoLyn wrote:I'm kind of shocked at what I am learning here ... I thought the requip/mirapex, etc., was the standard treatment for RLS. ...

Holland, do the Neupro patches have any pain relieving properties?...


JoLyn, you are correct that Requip and Mirapex are the standard medications that are usually used for initial treatment of restless leg syndrome. Because of the high incidence of augmentation, there is a shift by some RLS specialists to initially recommending gabapentin, Lyrica or Horizant. Your PCP shouldn't be faulted for starting you off on those medications, they are the standard of care for RLS, although that is starting to change.

Neupro has no pain relieving properties. Sorry.
Blessings,
Holland

Rustsmith
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Re: Thanks for the add Rustsmith

Postby Rustsmith » Thu Jan 25, 2018 11:32 pm

Is there a specialist that works with RLSl? I read somewhere not to go to a neurologist so now I am confused.


The type of specialists who you would have the best luck with for understanding RLS are the neurologists. However, because RLS was generally not included in their training, many may only have a cursory understanding of how to treat it. If you can find one, you would have a better chance with a neurologist who is a specialist in movement disorders.

Finally, if you are close to one, you will get the best care if you can go to one of the Foundation's Quality Care Clinics. The doctors at these clinics are all extremely familiar with RLS and the latest thinking in how to treat in. In fact, many of them also conduct research into the causes and treatment of RLS. You can find out about these clinics at https://www.rls.org/treatment/quality-care-centers
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.

JoLyn
Posts: 13
Joined: Wed Jan 24, 2018 8:47 pm

Re: Thanks for the add Rustsmith

Postby JoLyn » Fri Jan 26, 2018 4:37 am

Thank you Holland & Steve!

I am with Kaiser Permanente here in California so I don't know what my options may be at this point. I will find out though. I was encouraged when I talked to my PCP because he seems to be willing to check out options. As I said earlier he wants me to double my Mirapex dose ... with what I have read I am very hesitant to do that.

JL

Polar Bear
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Re: Thanks for the add Rustsmith

Postby Polar Bear » Fri Jan 26, 2018 4:42 pm

JoLyn - Dr Mark Buchfuhrer is in Southern California and he is most definitely a wonderful man to see if at all possible. He is a Sleep and RLS Specialist and is heavily involved in the treatment of this condition. I am in a rush just now and don't have the contact details just at the moment but I'm pretty sure that googling his name will soon locate the information.
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

JoLyn
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Joined: Wed Jan 24, 2018 8:47 pm

Re: Thanks for the add Rustsmith

Postby JoLyn » Fri Jan 26, 2018 5:21 pm

Polar Bear wrote:JoLyn - Dr Mark Buchfuhrer is in Southern California and he is most definitely a wonderful man to see if at all possible. He is a Sleep and RLS Specialist and is heavily involved in the treatment of this condition. I am in a rush just now and don't have the contact details just at the moment but I'm pretty sure that googling his name will soon locate the information.


Thank you for thinking of me Betty ... I am in Sacramento which is quite a ways from L.A. area. Right now my PCP is working with me but if I feel the need I will ask him for a referral. I am with Kaiser Permanente so referrals are within their network. The more I am learning from you all the more I see I need someone who is really up on RLS treatment. With the sleep apnea plus RLS, this is really a complex issue. And added to that I think I may be experiencing augmentation. Ugg!

Thanks much,

JL


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