Hi, new here

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Midnightmarathon
Posts: 9
Joined: Sat Sep 03, 2016 7:54 pm

Hi, new here

Postby Midnightmarathon » Wed Sep 07, 2016 12:16 am

Hello all,
I am brand new here and thought I would introduce myself. I apologize that this will be long, but there’s a lot to say. I have had RLS/PLMD for at about 30 years and over the last decade it has become very severe progressing to the point that sometimes I am getting as many as 3 or 4 PLM a minute. I have had a sleep study that showed absolutely 0 minutes of REM sleep, even though, ironically (do I get points for an iron fortified word?) my RLS was very good that night! I have literally been driven to the point where I am having suicidal thoughts as I take my 2nd hot bath of the night.
Why is this disease not taken seriously? I think anyone who vetoes funding for RLS research it should be sentenced to walk 6 months in our midnight shoes.
Until recently, I was blissfully on a 3 mg neopro patch + .5mg Clonazepam for almost 3 years and for the most part, that patch worked like magic. This past June 24th, I had a total knee replacement and it seems my health took a total nosedive. I was ok the first month because I was on oxycodone and I’m assuming this controlled not only the pain but the RLS as well.
When I weaned off of it, the dominos started to fall. Some other background - I also suffer from Chronic migraines, asthma, hypothyroidism and severe osteoporosis and now diabetes. My job which is a super stressful 9-10 hour a day, no break deal, was calling me 2 weeks’ post-surgery asking when I’d be back and continued to harp on me.
The migraines came back with a vengeance, as did the RLS/PLMD. My neurologist increased my patch to 4mg which did not help. I also started feeling nauseas all the time and I 10lbs, becoming scary thin.
I saw a “movement disorder specialist” on 8/3 and she I was going through Augmentation with the patch and she lowered it to 1mg and put me on CarboLevoDopa, along with the Clonazepam as needed. She also said she believed my iron was low and ordered iron levels. She said she would be available to manage my meds by phone but she then went on vacation for over a month and the practice has just referred me back to my primary in the interim. The change of meds helped for about a week and then things got bad. I have since
had no relief or guidance. I am hoping she will contact me tomorrow.
I have MANY questions concerning meds, iron levels, disability (mine surgical disability is about to run out but I am a train wreck), and just coping in general. I know there are worse things but geez after 4 or 5 nights of no sleep sometimes it don’t feel that way.
Looking forward to connecting and thanks in advance for any advice! :D

stjohnh
Posts: 324
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Hi, new here

Postby stjohnh » Wed Sep 07, 2016 2:17 am

Hi Midnight, you are in the right place. Lots of folks with experience in all the problems of RLS, as well as a community that "gets it" about how terrible life with RLS can be, meds that work poorly and/or have serious side effects, unresponsive or uneducated doctors, family problems, etc, etc
.... Ask away !!
Blessings,
Holland

Rustsmith
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Location: Pueblo, Colorado

Re: Hi, new here

Postby Rustsmith » Wed Sep 07, 2016 2:21 am

Midnightmarathon, I wish that your introductory message was unusual either in length, in complexity or problems created by physicians but it unfortunately is not.

First, it is not unusual for something such as surgery to trigger a step change that worsens the severity of someone's RLS. I have never seen any reason why this happens, but it plays a frequent role in many of the stories that are told here.

As for your RLS issues and meds, I also suffer from migraines, asthma, hypothyroidism and PLMS all combined with RLS. Shortly after I was diagnosed with RLS, I asked that my migraine med be changed to gabapentin so that it would do double duty for both my migraines and my RLS. It doesn't help with my RLS movement issues but it is the only thing that I have found to help with my RLS induced insomnia.

I was also on Neupro for 15 months, 2mg for a short time, then 3mg and finally 4mg before the augmentation became too severe (and this was with 900mg of gabapentin at the same time). Since I had already augmented on pramipexole and I was already on gabapentin, the only option left was an opiate. I am now taking methadone and it works well. Yes there is the stigma of being a chronic user of a narcotic and there are a number of complications involved with getting prescriptions, but the opiates work (as you found with the oxycodone).

So, my suggestion if you get to talk with you doctor tomorrow is first to propose the use of an opiate (it doesn't matter too much which one, as long as it works for you). Second, you might propose trying gabapentin both as a treatment for your migraines and also as a supplement to the clonzepam (and maybe eventually as a replacement). You may get some pushback from your doctor on the opiates, but if she really understands RLS, she will know that the combination of Neupro and CarboLevoDopa was not going to be a long term solution.
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.

stjohnh
Posts: 324
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Hi, new here

Postby stjohnh » Wed Sep 07, 2016 3:41 am

General iron info: your brain needs iron to work properly. Many people with RLS have low brain iron and if increased rmtheir symptoms may get better. There is no good test for brain iron, but the crediting test indicates your overall body iron. The normal range doctors use is about 20, but that is for judging if you have enough iron to make red blood cells, not to have your brain work properly. It has been found that a ferritin above 75 will help the symptoms of RLS. For many people.
Blessings,
Holland

ViewsAskew
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Re: Hi, new here

Postby ViewsAskew » Wed Sep 07, 2016 7:47 am

Great info so far - hope it's helping you. I didn't see this commented on, but could have missed it. Not sure why your doc would use carbidopa/levodopa when augmenting. For most of us, that makes things MUCH worse. I can certainly attest to that for me! Stopping the dopaminergic is good - one school of thought is to just stop and deal with hell for 5 to 20 days without any other meds (need to clear out the receptors). Other school of thought is that using a strong opioid during this time is the right thing, then you can reassess in a few weeks and see about other options.
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
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Location: Northwest Territories, Canada

Re: Hi, new here

Postby badnights » Wed Sep 07, 2016 9:07 am

Hey there
The first thing that struck me is that your specialist, who happily diagnosed you with augmentation, then put you on the medication most notorious for causing augmentation. I am baffled. I hope she's reading up on augmentation in RLS/WED while she's away. iiho, you have to get off the levo-carb as well as the Neupro. Getting off dopamine meds is tricky for people with WED/RLS, especially if they've augmented. Augmentation is a worsening of the disease caused by the medication that was given to help. It is pretty much unique to RLS/WED so most doctors aren't familiar with it and do what they did to you - raise the dose which makes the problem even worse. The doctors who are familiar with it, though, usually have a clue about how to treat it - there are two main methods, and neither of them involve giving the patient levo-carbidopa!! (I am still amazed and worried by that prescription)

Getting off a dopamine agonist or levo-carbidopa for people with RLS/WED involves a withdrawal phase during which the sensory symptoms and urge to move become even more severe than the augmented symptoms. In other words, it can be hell. This periods lasts from days to weeks, but typically the first 3 days are hell, by the 5th day there is definitely a light at the end of the tunnel. This is the general experience of someone who quits the medication cold turkey. It seems, from people I've listened to here, that tapering off the medication instead of quitting abruptly just prolongs the agony. This is because the withdrawal starts as soon as you lower the dose and continues at the same intensity until it;s all out of your system.

The one thing that lessens the hell is a potent opioid like hydromorphone or oxycodone. Even a moderately strong med like Tramadol (which acts like an opioid) can help. There is no reason a physician sworn to help people should let someone with WED/RLS go through DA withdrawal without an opioid - - except they don't get how excruciatingly unbearable it is. They really have no idea. My GP saw me once when I was in withdrawal and she literally drew back in horror. (I hope she learned something ha ha that was a bitter laugh btw)

So when you're advised to ask for an opioid, it's for that purpose. A three or four week prescription (really a 2-3 week prescription at the right dose would probably be enough). Asking for an opioid is tricky though, as you can guess. You might want to print a reference, or say "I was researching augmentation, and I read that the withdrawal symptoms are even worse than the augmenation itself, adn that the only thing that makes it bearable is an opioid. Have you heard of this? What do you advise that I do?" If you click on the link in my signature (below this post), you will find links to a number of references dealing with augmentation and with ferritin levels.

As holland said, RLS/WED patients should have ferritin levels in their blood of at least 75. Ferritin is a protein that contains iron. IT's not always included in an iron panel, so be sure it's on the requisition. And if the lab says the result is "normal" be sure to ask for the actual number, because 20 or above is normal for non-RLS patients, but it's way low for us. It's been known for a few years now, but hasn't seeped out into the world of practicing medicine, that people with low ferritin are more likely to augment on the dopamine meds. So sadly, whoever put you on the Neupro should have checked your ferritin first and advised you to take oral iron supplements if it was low. Ferritin levels are also inversely correlated with RLS/WED severity - meaning the lower the ferritin, the more severe the symptoms.

Taking oral iron is something you can do to help yourself right now - but only if a medical professional verifies that it won't harm you. Take each iron pill with vitamin C (say 500 mg) on as empty a stomach as possible, to get the best absorption. Ferrous sulfate or ferrous fumarate are common formulations.

Taking vitamin D can help as well. I notice increased severity of symptoms within a day of stopping iron, within 1-2 weeks of stopping vitamin D. I take 4000 IU of D daily and 3 doses of iron each 65 mf elemental iron. That's what works for me; oithers are different. Some people with WED don;t take iron at all, and their ferritin is fine. So find out what that number is, and record it for future comparisons.

After you've gotten off the dopamine meds, some doctors will re-introduce the offending medication at a lower dose, or try you on a different dopamine med, but most of us eventually augment again. It may be years before that happens, though, so for some people it might be a reasonable option. But I would advise never ever going anywhere near a dopamine agonist or levo-carbidopa again, not for steady every-day use. I use levo-carbidopa sparingly for breakthrough symptoms. Never more than one 25/100 a day, never more than 3 days in a row or 4 days in any given week, and usually less. Ann (viewsaskew) alternates pramipexole (a DA) with another med every few days (or she did). So dopamine meds have their uses in people who have augmented - but they can't be your main solution. You will need an anti-convulsant, an opioid,
or a combination of both. Or perhaps a combination that includes a different DA than rotigotine/Neupro.

I wish you luck with all this, but to fortify the luck, read the papers in the link in my signature, and search this board for topics about augmentation
Anyway, what are your symptoms like now, and how do they compare to before the Neupro, and since the change to lower Neupro?
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

Polar Bear
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Location: N. Ireland

Re: Hi, new here

Postby Polar Bear » Wed Sep 07, 2016 2:33 pm

I can't add much to what has already been said - all excellent advice.

The fact that you were prescribed levocarbidopa jumped right out at me - it is notorious for causing augmentation unless used irregularly.
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

Midnightmarathon
Posts: 9
Joined: Sat Sep 03, 2016 7:54 pm

Re: Hi, new here

Postby Midnightmarathon » Mon Sep 12, 2016 10:13 pm

Hi all, sorry for delayed thanks but I know you understand when I tell you I was busy trying out for part in "the walking dead". Figured I'd be a shoein as no makeup required.
Anyhow, thank you all sooo much for you support and even more so for the valuable information! Wow, I had no idea my "specialist" (a "movement disorder specialist" at a big medical center here in North NJ) was so off course!!!! I think part of the problem may be the current climate in the medical world to not perscribe opitates unless the patient is literally screaming in pain. I had a total knee replacement (THE most painful surgery, and my surgeon was hesitant about giving me a refill!)
Anyway, she DID mention opiates a few years back, but never offered it to me now. I’m thinking because of what I just said. I’m in the middle of trying to get an extension on my ST disability and she seems willing to help with this, so I am hesitant to ask for more until I have that from her.
I have also been under the care of a wonderful therapist because me sleep deprivation got so bad that I was literally becoming suicidal, something I’ve never even contemplated. This is truly a horrible disease.
I DO have an old tramadol script so maybe I will try to use this to get off of the CarboLevoDopa and the Patch which I’m now on 3mg again and not working. Doctor told me to go back on patch AND continue CarboLevoDopa as needed. I was up to 75mg while she was away. Been on 25mg now with the patch and still not working. So I think you guys are the true experts and I will have to try to get off of this stuff.
BTW, I forgot to say, I am on Gabapentin 1200mg. It doesn’t help the RLS/PLMD but does help make me sleepy but not sleepy enough. My primary care doc prescribed Ambien and even that didn’t work for hours, my symptoms so bad. my ferritin level was 175 so good, but my iron binding capacity was a bit low.
Now for some questions. How do you go about finding a specialist who knows what the heck they are doing? How about one that is sympathetic and willing to prescribe opiates when needed? I thought I was going to a real specialist here. Guess not.
Has anyone gone to John Hopkins? I contacted them for an appointment. They would be “out of network” and very expensive, but desperation is desperation. Wondering if you guys think worth it?
Anyone have any docs in NJ/NYC they can recommend?
Again, thank you all for the info. At I’m scared about trying to get off of the patch and CarboLevoDopa but if it gives my body a break from these will make them work again I’m all for that!

stjohnh
Posts: 324
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Hi, new here

Postby stjohnh » Mon Sep 12, 2016 10:45 pm

Look here
http://www.rls.org/qcc-directory
These docs "get it" and many are the leading researchers in the country for RLS.
Blessings,
Holland

ViewsAskew
Moderator
Posts: 14894
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Hi, new here

Postby ViewsAskew » Tue Sep 13, 2016 5:07 am

The break will likely be miserable. But all of us who've done it are SO glad we did - at least that's what we seem to hear again and again. I know I am glad!

Many of our members have gone to JH. It can be great - but as I understand it, they have a no opioids policy for new patients! It's not their idea - they are trying to fight it, if I remember correctly - so you are right about the opioid climate. BUT - even if they could prescribe them, they have the philosophy that stopping everything (slowly if required, depends on the med) for at least 10 days is required. EeFall went through it (one of our members) and documented it, as well as a few others. It's not fun, but they will help you get through it.
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
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Location: Northwest Territories, Canada

Re: Hi, new here

Postby badnights » Tue Sep 13, 2016 8:42 am

I have also been under the care of a wonderful therapist because me sleep deprivation got so bad that I was literally becoming suicidal, something I’ve never even contemplated. This is truly a horrible disease.
What's horrible is that you're seeing a therapist instead of taking effective medication. For most of us there's no need to suffer that degree of sleep deprivation. Stories like yours make me realize over and over again how much unnecessary suffering still goes on because of gross ignorance of this disease in medical circles.

I am on Gabapentin 1200mg. It doesn’t help the RLS/PLMD but does help make me sleepy but not sleepy enough. My primary care doc prescribed Ambien and even that didn’t work for hours, my symptoms so bad
You will not be able to sleep if your urge to move and physical sensations are not controlled. No amount of sleeping aid can overcome that; all that happens when you take Ambien or stronger sleeping meds is that your brain gets all foggy and zombie-like but you have to keep moving, so you fall and bang into things and you're unable to wake up enough and unable to sleep and it's horrible.

Johns Hopkins has an excellent team of RLS/WED specialists, and I would go there if I were you and it was anywhere within my means. I would walk there if I had to. Specialists don't always - can't - know everything about their supposed specialties. Some of the best WED doctors turn out to be GPs, some of the worst are neurologists, go figure. There are two main classes of "specialist" who might be very good WED/RLS docs: neurologists (because it is a neurological disorder) and sleep specialists. Sleep specialists never start out as such, they start out mainly as one of three other types of specialist: neurologists interested in movement disorders, which affect sleep, psychiatrists (interested in eg. insomnias), and pulmonologists (eg. sleep-disordered breathing). But doctors interested in sleep issues and movement issues can come at it from different places, so you can't really predict who will be good by what their specialty is. You can only go by reputation, by the doctor's actual experience with refractory WED patients.

It would be really nice for you if you could get off the patch with some help from a knowledgeable doctor. MAybe you could try to dtich the levo-carbidopa on your own first? What does your GP think about all this, just goes along with the neuro? You could try showing the information you've collected about augmentation - and how common it is with levo-carbidopa - to him/her and say "please get me off this med!".
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: 349
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Hi, new here

Postby legsbestill » Wed Sep 14, 2016 2:01 pm

Anyone who can make a good joke about iron when going through such trauma deserves better treatment than a consultant who delivers apparently inappropriate advice and then disappears for weeks on end. Unfortunately such medical care is far from unusual for RLS/WED and is very similar to my own experience.

I came off mirapexin earlier this year after years of taking it in increasing amounts. While the withdrawal period was as horrendous as people claim, it was definitely the correct thing to do and I am delighted that I did it. However, I would say that I do not think it would be possible to work a normal job, let alone a high stress one, when coming off dopamine and you would do well to sort out your disability leave in advance. My medical advisors were not aware of the role of opioids in treating RLS and in particular in assisting withdrawing from dopamine agonists. I took pregabalin but found it made no appreciable difference to the symptoms and I eventually stopped taking it. As you are already taking gabapentin that information is probably of little significance for you in any event.

A huge benefit to coming off dopamine for me is that I can see more clearly what medication my RLS responds to and how well. I hope that you manage to accomplish it and wish you all the best.

Midnightmarathon
Posts: 9
Joined: Sat Sep 03, 2016 7:54 pm

Re: Hi, new here

Postby Midnightmarathon » Wed Sep 14, 2016 3:58 pm

Thanks all AGAIN for the great advice! John Hopkins here I come! Does anyone know if Yale has a no opoids policy as well. I could go there instead. I have an appt at JH for January. Another question, when you come off of Dopamine drugs how long do you recommend staying off of them? Seems like the mistake was getting on them to begin with!

Rustsmith
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Re: Hi, new here

Postby Rustsmith » Wed Sep 14, 2016 4:55 pm

Midnightmarathon, the current opinion leans toward once you have augmented on two DAs, you cannot go back to them as the primary mode of treatment. You can use them as a temporary supplement (like before flying) or in a mode where you regulary alternate with an opiate or an alpha-2-delta med.

In my case, my primary RLS treatment has been methadone for the last six months. I also take pramipexole each night to treat my PLMS. However, my doctor has a sleep study scheduled (earliest was November) to see whether my sleep problems are due to poor control of my PLMS or whether it is straight RLS induced insomnia (I cannot stay asleep for more than about 6 hrs).
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.

Rustsmith
Moderator
Posts: 2660
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Hi, new here

Postby Rustsmith » Wed Sep 14, 2016 8:09 pm

Does anyone know if Yale has a no opoids policy as well.


I cannot tell you for certain, but it is my understanding that one of the criteria for the RLS Foundation for granting a Quality Care certification is the willingness to prescribe opiates. With that said, it has been reported that Johns Hopkins is going through issues where there are restrictions on writing opiate prescriptions for new patients. However, Johns Hopkins has been a Quality Center since the beginning of the program but Yale is new to the system. That would therefore lead me to believe that Yale will not have a prohibition for writing opiate prescriptions when necessary.
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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