New member Hello! And Questions

[EdSoFlo]

Hello to all fellow RLS suffers...just knowing we're not alone has such great value itself. My specific situation: I'd suffered for me entire life (I remember going to the doctor as a kid and describing feeling "crazy legs"), I finally was officially treated at a very highly regarded sleep disorder center in Los Angeles about 6 years ago and got the official diagnosis. Long story short, all the proper testing was done (was not iron deficient, etc), every first and second line med was tried (Mirapex, Requip, Neurontin, etc, and he then tried the opoid route, prescribing 5mg Oxycodone per night. It was like the magic bullet for me, virtually total relief with zero side effects. We stayed this treatment course (with six month follow up including tox screening which of course he had to do with a highly controlled substance) for about 5 years and it never failed to work, nor did my body become overly accustomed to it and requiring a higher dose. The very low dosage of 5mg seemed just exactly what my system needed to return to normal at night. I've now moved to South Florida, and it has been a nightmare finding a sleep specialist at all, let alone one that is comfortable with this line of treatment (even though the most cursory research would indicate it's a standard and highly tested efficacious treatment for RLS). I've found a neurologist who has been 100% sincere in trying to help! we've tried everything I'd hadn't before from Lyrica (AWFUL!) to the Neuro Patch (did nothing) and was about to give up when he tried Sinemet (Carbodopa/Levodopa 25/100) and lo and behold it worked pretty well. I was so relieved to have found something almost as effective as the Oxycodone (I'd say about 65-70% as much which was far better than nothing). He would not prescribe Oxycodone or even Tramodol (which is not controlled and I've read can be effective) as I think South Florida used to have a bad pill mill problem so they've gone so far the other way with legislation that doctors are terrified to write opoid prescriptions even when 100% medically called for and correct. So I was so happy to have found what looked like finally a solution until the problem with this med pretty quickly kicked in -- SEVERE AUGMENTATION. I was waking up at 3 AM with symptoms worse than I'd ever had before, I'd get symptoms starting much earlier in the day than ever before, needed more and more of the med to be effective...all of what I've come to find are pretty expected side effects of this medication. It's become so bad I think I'd rather just live with my naturally severe RLS than the monster this has unleashed. Sorry for the (very) long backstory but wanted it there for my subsequent questions; 1) is anyone aware of a good sleep doc ANYWHERE throughout S Fla (I'm in West Palm but happy to travel anywhere in region for the right person) who understand RLS in an expert fashion? 2) has anyone else had this awful experience with Sinemet, and how the hell do you taper off of it? I'm at my wits end here. I knew I was leaving a progressive area with excellent medical care to, well, let's just say a slightly more backwards one, but had no idea getting proper treatment would be so difficult. Any answers on either would be greatly appreciated. Thank you so much and glad to be part of the group! PS don't want to violate board rules but if OK I'd like to post on Medication board as well, admin perhaps you can tell me if this is OK...thank you!

[Polar Bear]

Welcome to the discussion board. Yes, please feel free to post on any of the relevant sections.

It's good to hear that you've found an understanding neurologist, it's just a shame that his understanding doesn't follow through to the opiods.
For your own information and for discussion with your doctor I'd suggest you get yourself a copy of this book.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Make sure to get the second edition. These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon. There is a section on augmentation and its treatment.

Also, have you had your ferritin serum level checked, this is pretty important. It is a blood test that is not normally done with routine blood works and you need to ask for it. This tells the level of iron stored in your brain – and that is what is important to us sufferers of WED/RLS. We need a level of around 100, especially if we are taking a DA drug such as pramipezole or ropinerole. When getting the results of this test please ask your doctor for the actual level = do not accept ‘normal’ as an answer. Doctors and Labs may consider 20 to be normal… but it isn’t normal for us. And none of us should be using the DA medications unless our ferritin serum is up around 100.

You really do need help to get though the sorting out of augmentation and ramping up of symptoms while withdrawal takes place.
There are experts at John Hopkins and also further South, also Dr Buchfuhrer in California. (sorry to be vague, I'm in UK)
There is a list here on the discussion board and if I find it I will come back and edit this post.
Recommendations are best, some doctors may claim to treat WED/RLS and yet they are very limited in what they know.

[ViewsAskew]

As soon as I read you'd had success with Sinemet, I was waiting for the augmentation in your story.

It's such a terrible thing that doctors are stymied by this anti-opioid hysteria. I've had two or three docs say they'd try it and in the end, they each "fired" me as a patient because they were too afraid of it.

I don't know your situation financially....but I do what Polar Bear suggested. I fly to Southern Cal once a year. Dr Buchfuhrer's office mails me my scripts. It's expensive to pay for Fed Ex, but no more than I'd pay if I had a more expensive drug. The first visit was about $300, but my annual ones are around $125 or so, I think. The airfare I try to get on sale - usually about $350 to $400 RT. Then a rental car. I am lucky that I have relatives and friends there, so I have no hotel cost. And, I turn it into a vacation. This year, I'm turning it into a work trip - my husband and I have a business. I am not that active these days, but we're looking to find contract work for him in the So Cal area so we can start spending our winters there and our summers here (or wherever).

Closer to you is Dr Rye - in Georgia at Emory. He has WED. I have NO idea if he sees patients who do not live locally. I believe Dr Ondo does - he's by Houston. I know that the folks at Mayo Clnic - Dr Silber, for one - do. And, the folks at Johns Hopkins do.

In terms of doctors, look through the post in the General Discussion thread - it lists all recommendations we've had. Also, try a site search for the word Florida and see what happens.

Per double posting, thanks for asking! We would remove it if you did. The board is pretty small in terms of regular contributors (lots of people come when they have a problem, then leave - a few of us hang around all the time) and most of us read the whole thing.

[EdSoFlo]

Thank you both very much for all the info above. I actually had a great sleep doc in CA as I said before who was careful to monitor the opoid use, but was perfectly OK with it and even sent my a script here in Florida when I first moved here (which of course pharmacies wouldn't fill here, they looked at me like I was insane. Luckily at that time I had insurance that filled it via mail.) Yes sadly politicians and the media need their drug war boogeymen to show how tough they are on "drugs" and Oxycodone seems to be the one of the moment, tragically even terminal cancer patients have trouble getting enough of it here in S Florida or so I've read. My neurologist has referred me to a pain clinic so we'll see if they're willing to take on my case. He really does want to help just is fearful I think of writing the prescriptions. So ridiculous. Hopefully 5 or so solid years of non-abusive totally efficacious use, and a track record have trying everything else literally under the sun will make them feel ok about prescribing. Even if so I'm worried about how to deal with this augmentation issue as I get rid of the Sinemet. It's truly awful as those that have experienced it know, worse than even normal symptoms by far. I wish I had never heard of this drug. It is so very frustrating to know that I had my problem essentially solved with zero side effects with a small dose of what it seems some people like to abuse at far higher levels and I (and many others) have to pay the price. But that's reality and I'll just press on until I find someone here that can help. As for a trip to CA I would just go see my Dr at the St Johns Sleep Disorder Center in Santa Monica (which is wonderful) though not sure if they're open to treating people who've moved out of state. I had far better health insurance at the time through my work now carry my own which is pretty lousy but I'm willing to pay out of pocket for a specialist who can truly help (as I do now for my Neuro)

I will get the iron test thank you so much for breaking that down for me, and will read the other boards searching for more info. Thanks again to all! What a resource.

[Yankiwi]

How frustrating for you, having had a good medicine that you now can't use.
I tried Sinemet about 10 years ago, had rapid augmentation and also diarrhea so I got off of it. Lots of crying in the bathroom at night. I did use the rest of my prescription for long car rides, movies and concerts but can't use Sinemet at all now due to taking Ropinerol. Dr Buchfuhrer, via email, recommended I try hydrocodone for short term use but it isn't available at all in New Zealand. Now I'm stuck too.

[ViewsAskew]

I don't think that the pharmacies can refuse to fill a script, can they? That is insane. I have trouble once in awhile because Illinois has different requirements for how the script is written and the office sometimes forgets. But, they call the office, get confirmation, and all is OK.

All opioids are on the hotseat, unfortunately. Tramadol might be one that is low flying enough to get under the radar (it WILL cause physical dependence, though - but is easy to taper). But, oxy really is at the top of the list of opioids. With methadone right behind it, I think.

I would definitely check to see if there is a pharmacy that would take the out of state scripts. Walgreens or one of the large national pharmacies - it seems that they would. And if they wouldn't, I'd call the corporate office and ask why not! It seems that the key to you getting what you need, if you cannot find someone local, is that a pharmacy will fill what someone out of state writes.

I waited ten years to treat my PLMS - it was much worse than the WED/RLS for me. I knew about how many difficulties there were. But, when the dopamine agonists came out, it seemed a wonder drug for many of us. I was convinced that it would work. I am one of the few that augments very fast - it was under two weeks and I had RLS/WED daily (at that time, I only had it once or twice a month, mildly). The doc was clueless. Looking back, I often wish I'd NEVER taken anything. But, most likely, I'd still have ended up in the same place - unable to work in a normal job because I can't get good sleep and am often too tired and sleep deprived. So, I am where I am!

I think, but am not sure, that the period of increased symptoms after you stop it is much shorter with Sinemet than with the dopamine agonists, such as ropinerole and pramipexole - maybe 5 to 7 days? With an opioid, it should be relatively easy to get through. (I hope I'm remembering that correctly...someone will correct me if I'm wrong.)

[Polar Bear]

EdSoFlo and others - My apologies for saying that it was ok to post also on the Medication Board.
I have misunderstood.
I did not mean that it was ok to 'double post'.
I thought you meant ... in general, could you post on the Medication Board.

[ViewsAskew]

EdSoFlo and others - My apologies for saying that it was ok to post also on the Medication Board.
I have misunderstood.
I did not mean that it was ok to 'double post'.
I thought you meant ... in general, could you post on the Medication Board.

Indeed! You are welcome to post anywhere - just not the same post .

[EdSoFlo]

Hi, I just wanted to post an update, and simultaneously ask a question. I finally found a pain clinic (ONLY such clinics are willing to prescribe opioid medication on a regular basis in Florida to the best of my knowledge) to see me and treat my RLS. After filling our about half a book in forms agreeing to every manner of ridiculous release and promise not to do things like sell my medication on the street, etc, and a urine drug screen, they prescribed oxycodone 5 mg (sadly with acetaminophen, unlike in California) 1x per night, as I had been taking for six years prior to moving here. It was such a relief to be back on the med that had virtually vanquished my RLS, and with no side effects or augmentation. It literally was a sense of, finally, I have relief and can get back to my life again. There was some residual augmentation from the Sinemet, but it went away after a few days. I saw them again after 30 days (you have to see them MONTHLY to get a refill, absurd) and all was well. Until the bill arrived. My insurance will not cover this, and the total for two visits came to - $1400+!! Most of which was from the urine drug screen. Now I understand the need for such things when prescribing a highly controlled substance that many people abuse, and I was tested at my LA sleep clinic at my twice yearly appointments. But this is totally insane. They bill a fee for the test, $125, then ON TOP OF that add fees for every other drug they are testing for, a process they call "confirmation", for example 'barbiturates' is $100, 'skeletal muscle relaxants' $125, etc. This test must be done every three months. When I called in alarm about this, they said it was due to Florida statute, and had no choice. Has anyone heard of such a thing? I'm certain my CA clinic ran a very thorough screen, and while insurance paid the bill. I saw it, and it was around $75 I think. Needless to say I told them I thought this was outrageous, and I could/would not continue my treatment with them.

I'm just trying to see if anyone knows anything about this 'confirmation' process in a drug screen, and also to vent my frustration at such an incredibly insane policy if it is indeed statute. I'm sure if it is the labs that do these tests sure lobbied for it. And as bad as it is for me, and it's been pretty awful to return to Sinemet and all its baggage when I have a perfectly effective med that is a widely used and researched line of medication for this condition, one that I have a track record of using with great effectiveness and zero side effects/complications (just because it's some politicians boogeyman of the week), I feel terrible for those in true excruciating daily pain that cannot function without these meds. It's like extortion.

In any event would greatly appreciate any feedback/thoughts. Cheers!

[ViewsAskew]

Oh, my. That sounds insane!!!!!

I have not dealt with a pain clinic, so I am no help to you at all. I just can't believe it really costs that much. I'm sitting here shaking my head....

But, very glad you have relief again!

[EdSoFlo]

Thanks, even when you know something is nutty, it's always nice to hear it back! And that's the thing, I'm not getting relief...due to the crazy cost I ceased treatment there and am back using the Sinemet. That's the most frustrating aspect. I'm going to look more into it, maybe this place just wanted to bill sky-high lab bills, and it's not a legal requirement and I can find someone else. We shall see.

[jul2873]

I'm very sorry for the horrible time you're having. I use a mild, legal opioid called kratom, that is a powdered leaf from places like Thiland, Borneo etc. Here is a book of research on it: http://smile.amazon.com/Kratom-Other-Mi ... rds=kratom

It is completely effective for me. Because, of course, it's not time-released, I need to take a dose (about a gram) every few hours throughout the day--usually 6 doses over 24 hours. I stir a gram into a small cup of orange juice, let it sit for at least 20 minutes, and then drink it. I keep a tray of these doses made up in the refrigerator.

Kratom is available from many places on the Internet. The Red Leaf Borneo strain, that I buy at Velvet Soul, works best for me. Good luck to you.

[pinkynose]

I live in South Florida and agree with you 100% about how backwards our state is.
Have you tried a neurologist recommended on the RLS Foundation's website? I plan to go to a recommended neurologist listed in Hollywood, FL next month when I get back from visiting my son in Ohio. I tried a neurologist in Miami who was competent in neurology but not RLS. Perhaps the recommended doctors will be more knowledgeable about the need to include opioids for some patients.

[EdSoFlo]

Thank you to you both for your replies sorry for the delay in response. I have tried Kratom, I ordered a powder form and it didn't do much but upset my stomach and make me feel kind of funky, mood-wise, the next day. There is a Kava joint that sells a pre-made tea that works a lot better but not great, and it's $10 for a little bottle. Maybe it's a matter of what type you use, and from whom...I'll check out the one you recommended much thanks.

I didn't know there was a listed neurologist who is good with RLS in Hollywood that's great news I'll look into that ASAP. The one I'm seeing now is pretty good (tho he rushes me in and out like an afterthought) he's just not willing to prescribe an opioid, even to patient like me with a track record of years of safe effective use. He referred me to the pain place that treated me, but I don't think he or his staff were aware of their obscene drug testing fees. Which, by the way, they told me were mandated by FL law, I researched the relevant statues and could find nothing of the kind. Hmm.

Thanks again to all.

[jul2873]

I am so sorry the kratom didn't work. When I started it I had never taken any prescription meds and so had no tolerance or augmentation. You probably need a larger dose than a gram at a time. It doesn't upset my stomach as long as I let the powder dissolve first in orange juice. Otherwise it sometimes does. Good luck. I am so sorry you are having this awful time.