Starting At Emory

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.
EdSoFlo
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Joined: Tue Jan 06, 2015 4:44 am

Starting At Emory

Postby EdSoFlo » Fri Dec 22, 2017 4:13 am

Hi all -

Just a brief background. I've had pretty severe RLS my entire life. As a young kid I remember describing it to a doctor as 'crazy legs'. I was officially diagnosed about 11 years ago at a very good sleep disorder clinic in Santa Monica CA, at age 38. Started with the usual DA's, didn't work and side effects. Tried Neurontin. Nope. My doctor then suggested opioids, which I had no clue were utilized in RLS care at that time. Started at 5 mg Oxycodone, and the very first night is was as if a switch on my RLS had been shut off. I had no side effects, and on the occasional bad night would need to increase to 10 mg but not often. It began the first period of what I'd call normal sleep in my entire life, and was life-changing to say the very least.

I then moved to South Florida in 2013, and got a taste of the opioid panic. The first neurologist I saw flatly refused to continue that treatment, so Lyrica (awful drug, worst nightmares I've ever had in my life) was tried, Neupro patch, and then Sinemet. The Sinemet actually worked a bit, at about an efficacy of 30% of the oxycodone. Better than nothing. Well you guessed it - after a few months BOOM, a truly frightening augmentation episode from hell. Which this poor idiot didn't even understand or had heard of, he just kept jacking up the dosage, I think I was up to 400mg per night. It entered my arms, trunk, everywhere, it was horrifying, like being electrocuted. I was very close to rushing to the ER one night. I wrote Dr B in desperation and bless that man he wrote back and said I MUST cease the meds and get back on opioids ASAP to relieve the augmentation. Thank god I found a sleep specialist here who upon hearing my story, obtaining my records from CA etc, was willing to prescribe the oxycodone again. I had to titrate up to 10 mg/night but that did the trick and has now perfectly well for close to a year and a half. He's cranky and makes it clear he doesn't like prescribing it but to his credit he does.

Sorry for the long background but just wanted to paint a clear picture. I have now moved to Atlanta, and have an appointment booked end of January with Dr Rye at the Emory Sleep Center. His reputation, and that of the clinic, are stellar and I'm so pleased they are in the area. That said I am hugely concerned that the current utterly hysterical media and political hype surrounding the 'opioid epidemic' - which let's be honest is about very ill people horribly abusing huge quantities of extremely potent drugs obtained on the street, and is about as far removed from the way us RLS patients are responsibly prescribed/use these medications as is possible - is going to make it impossible for even the best RLS treatment facilities and expert practitioners to prescribe these medications anymore. At 50, the thought of returning to a life of nightly misery and days of being in a daze is almost unthinkable. Has anyone had experience with Emory and Dr Rye? Has anyone elsewhere heard that after January it will be harder and harder to get these prescribed? I ultimately have faith however that being in the best hands and with a facility of such a stellar reputation I'll be able to continue my treatment and my normal, healthy life. Cheers and best to all.

ViewsAskew
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Re: Starting At Emory

Postby ViewsAskew » Fri Dec 22, 2017 6:22 am

Welcome to the board. And thank you for sharing your story.

I hope that Dr Rye doesn't disappoint. He has RLS and I would see him if I lived anywhere close to him.

Do you mind sharing the name of the Dr you saw in Santa Monica? I moved to So Cal recently. I see Dr. B now, but he is in his mid-60s and I hate to think of what will happen when he retires. Of course, you mentioned Dr. B, so maybe you saw him at some point.
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: Starting At Emory

Postby Rustsmith » Fri Dec 22, 2017 1:37 pm

Welcome to the discussion board.

I don't have anything to add about Dr Rye other than that I understand that one of the requirements to become a Foundation Quality Care Clinic is that they must be willing to use opioids to treat RLS in those of us who have experienced augmentation.

I share your opinions of the current opioid hysteria and have two suggestions for you along that line.

The first is to join in the advocacy campaign that the Foundation as started in Washington D.C. All that you need to do is send an email to Peter Herzog at herzog@hmcw.org. You will need to provide Peter with your mailing address in the email so that they can use it to determine your congressional district. They will then provide you with a letter where you will add about a paragraph explaining the situation with your RLS with respect to opioids. They will then use this to contact the appropriate staffers for your congressman and two senators. The purpose of this is to specifically get "carve outs" for the use of opioids to treat RLS.

The second suggestion is to join the research project run by Dr Winkelman at Mass General Hospital in Boston. You can start the process by going to http://www.massgeneral.org/rls-registry. This involves providing them with your phone number so that they can call your for an interview that takes about 30 minutes. They are collecting information about those of us who use opioids to treat our RLS. The purpose of this project is to collect enough info to show how we do not abuse our medication and that it is required to continue an effective treatment. The project will run for about 5 yrs.
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.

EdSoFlo
Posts: 20
Joined: Tue Jan 06, 2015 4:44 am

Re: Starting At Emory

Postby EdSoFlo » Fri Dec 22, 2017 3:31 pm

ViewsAskew wrote:Welcome to the board. And thank you for sharing your story.

I hope that Dr Rye doesn't disappoint. He has RLS and I would see him if I lived anywhere close to him.

Do you mind sharing the name of the Dr you saw in Santa Monica? I moved to So Cal recently. I see Dr. B now, but he is in his mid-60s and I hate to think of what will happen when he retires. Of course, you mentioned Dr. B, so maybe you saw him at some point.


Absolutely. His name is Dr Daniel Norman at Santa Monica Sleep Disorder Center. I think it's affiliated with St. John's Hospital but not sure. He's a terrific doctor and very kind and empathetic man. Could not recommend him more.

I never saw Dr B I simply had read about him I think here or another board which had his email.

ps welcome to So Cal, it's my home and despite all of it's hassles and problems, it's a great place and I miss it.
Last edited by EdSoFlo on Fri Dec 22, 2017 3:45 pm, edited 2 times in total.

EdSoFlo
Posts: 20
Joined: Tue Jan 06, 2015 4:44 am

Re: Starting At Emory

Postby EdSoFlo » Fri Dec 22, 2017 3:41 pm

Rustsmith wrote:Welcome to the discussion board.

I don't have anything to add about Dr Rye other than that I understand that one of the requirements to become a Foundation Quality Care Clinic is that they must be willing to use opioids to treat RLS in those of us who have experienced augmentation.

I share your opinions of the current opioid hysteria and have two suggestions for you along that line.

The first is to join in the advocacy campaign that the Foundation as started in Washington D.C. All that you need to do is send an email to Peter Herzog at herzog@hmcw.org. You will need to provide Peter with your mailing address in the email so that they can use it to determine your congressional district. They will then provide you with a letter where you will add about a paragraph explaining the situation with your RLS with respect to opioids. They will then use this to contact the appropriate staffers for your congressman and two senators. The purpose of this is to specifically get "carve outs" for the use of opioids to treat RLS.

The second suggestion is to join the research project run by Dr Winkelman at Mass General Hospital in Boston. You can start the process by going to http://www.massgeneral.org/rls-registry. This involves providing them with your phone number so that they can call your for an interview that takes about 30 minutes. They are collecting information about those of us who use opioids to treat our RLS. The purpose of this project is to collect enough info to show how we do not abuse our medication and that it is required to continue an effective treatment. The project will run for about 5 yrs.


Thank you so much. I really feel fortunate to have a Quality Care Clinic in town. He is a hard man to see I'll say that, I made the appointment in mid October and end of January was the soonest open slot! Which I take as a good sign =)

I reached out yesterday actually to participate in Dr. Winkleman's study and will do so enthusiastically. As for the advocacy campaign I will do so ASAP, that's a wonderful thing.

Thanks again and all best.

Polar Bear
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Re: Starting At Emory

Postby Polar Bear » Fri Dec 22, 2017 5:03 pm

It's wonderful that your treatment is going so well. I have only heard of Dr Rye but would believe that you will not be disappointed.

Isn't it a shame that you went through such a bad time when you first moved to South Florida. Most of us have attended doctors who proclaim to treat RLS only to find that we often know as much as they do. My own GP admitted he knew little about RLS but was willing to consider information that I printed out from the Foundation Website and also responses of Dr B to emails that I had sent him.

Forgive me if you already have this information This book is wonderful, it is easy to read and can be used for discussion purposes with your doctor.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. If you are interested in this book 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. This is what I use to help my doctor to help me.

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.
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

ViewsAskew
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Posts: 15214
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Starting At Emory

Postby ViewsAskew » Sun Dec 24, 2017 12:45 am

thanks for the doctor info in Santa Monica. In San Pedro for the moment, but depending on work, will likely end up on the west side and be closer to Santa Monica. I have family in the state and have loved it for a long time - happy to be here full time.
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.

EdSoFlo
Posts: 20
Joined: Tue Jan 06, 2015 4:44 am

Re: Starting At Emory

Postby EdSoFlo » Sun Jan 07, 2018 2:24 am

Polar Bear wrote:It's wonderful that your treatment is going so well. I have only heard of Dr Rye but would believe that you will not be disappointed.

Isn't it a shame that you went through such a bad time when you first moved to South Florida. Most of us have attended doctors who proclaim to treat RLS only to find that we often know as much as they do. My own GP admitted he knew little about RLS but was willing to consider information that I printed out from the Foundation Website and also responses of Dr B to emails that I had sent him.

Forgive me if you already have this information This book is wonderful, it is easy to read and can be used for discussion purposes with your doctor.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. If you are interested in this book 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. This is what I use to help my doctor to help me.

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.


Hi thanks so much for the info. I did have iron checked during initial diagnosis, and also did recently at check up. Seemed fine but I cant recall the number, I'll check it out.

I think timing had a bit to do with my issues in Florida, they had been through a really bad 'pill mill' situation and I arrived just after the crack down, so there was a real atmosphere of paranoia and panic about opioids there at the time. It's also the 'recovery' capital of the world it seems too so that added to the paranoia. I'm just grateful I (finally) found a sleep Dr who was willing to help, and a pharmacy that didn't give me any hassles. The pharmacist was actually nice, though asked one day how my RLS was, and that she understood how an opioid could help because it limits dopamine and we RLS sufferers already have too much (!!) I absolutely kid you not. That shows you the level of utter cluelessness out there. I just smiled and said, "yup!" and drove away...

Polar Bear
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Re: Starting At Emory

Postby Polar Bear » Sun Jan 07, 2018 1:08 pm

EdSoFlo - You say you have had your iron checked out. Please check on this i.e. what iron, because it is likely to have been a standard blood check.

To have Ferritin Serum levels checked is a specific request and is not usually done among standard blood works.
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

badnights
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Re: Starting At Emory

Postby badnights » Sun Jan 07, 2018 11:33 pm

Ditto what Betty said, ferritin is not always checked in an iron panel.

an opioid could help because it limits dopamine and we RLS sufferers already have too much
It seems odd, but there is a theory that we have dopamine in excess. Check out the Foundation's dopamine webinar RLS and the Dopaminergic System at https://www.rls.org/member-portal/webinars

This is what I understood: dopamine can either excite or inhibit the action of neurons, depending on its levels in the body, with high levels causing excitation. The mechanism by which this happens is the two types of dopamine receptor (there's actually 5, but they fall into two groups for the purposes of this discussion). One type (D2, D3, D4) has an inhibitory effect when activated, the other (D1, D5) has an excitatory effect. The inhibitory receptors are more attractive to the dopamine meds that we use, but when we take too much, they're overwhelmed and the excitatory receptors get activated. If the inhibitory-group receptors aren't functioning properly, they fail to inhibit various sensations. ...

... Darn, I haven't explained it. I would have to look at the webinar again. But I am sure they speculate about too much dopamine. They gave an example of a study on mice legs (no brain) in a bath; when dopamine was added to the bath, the legs started twitching.

So that pharmacist may not have been as out-to-lunch as she sounded.
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

Billdel
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Joined: Sun Jan 28, 2018 10:22 pm

Re: Starting At Emory

Postby Billdel » Sat Feb 03, 2018 11:32 pm

Hi. I read your history and noted that you have an appointment at Emory. It all sounded so familiar. It suffered since I WAS A KID, experiencing the serious throws of it a when I was older. Was prescribed Pramipexole and quickly got to 1 mg 3 times a day. And, recently found I needed more and was going to 4 times a day with tremors in both shoulders. I looked on line and found RLS Foundation and finally got some really knowledgeable information. Unfortunately the first item was that I was augmented to Pramipexole. Not having a Dr. I was confident in, I decided to withdraw and STOPPED the Pramipexole, cold turkey. WOW, what a ride I had for about 8 days. I got about 4 hours sleep with the symptoms running 24/7. It began to ease a few days ago except 7 PM to 7AM, when the attach was on. I was so tired and exhausted I couldn't sleep when it was not bothering me. A doctor whose wife has it offered a Rx for Klonopin 2 mg to take at bedtime. He said if that doesn't help call the Emory Clinic. Well, I had made an appointment at the Clinic right after I stopped the Pramipexole. Problem that shook me to my foundation was they couldn't see me until March!!!! Well last knight I took the 2 mg of Klonopin, and for the first time sine I started this roller coaster Jan. 21. I got a REALLY good nights sleep. Twelve hours to be exact, even if I have been groggy all day.
Now that I have taken it and had such good results, my question is what is others experience. Is it addictive , or require withdrawal at some point? I've had all the withdrawal I want to experience. for a life time.
Sorry for the tirade, I just wanted to get it out there for comments.
Thanks,
Bill

Rustsmith
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Re: Starting At Emory

Postby Rustsmith » Sun Feb 04, 2018 12:10 am

Bill, congratulations for getting off of the pramipexole. You will find that many of the members of this board have been through a similar experience (both before and during the withdrawal process), so your "tirade" is something that is similar to what many of us have posted. As far as your experience, there are also a number of us who could only get through it with the use of an opioid to cover the withdrawal symptoms, so you really did well.

As for the Klonipin (aka Clonazepam), it is a benzodiazapine. And yes, the benzos are addicting. In fact, many report that they are even more difficult to get off of than the dopamine agonists, like pramipexole. So, you have a choice to make at this point. Limited use of the Klonipin may help you recover from the withdrawal and get some sleep before your appointment next month. But obviously you don't want to trade one problem for another.

As for having to wait until March for the appointment at Emory, you are really lucky to have gotten an appointment so soon. Many have had to wait for months to get into one of the Foundation Quality Care Centers. It is all a case of too much demand and not enough doctors who understand how to treat RLS. But, I am certain that once you get in to see them, you will agree that it was worth the wait. So now, you just need to survive your RLS until then.
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.

badnights
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Re: Starting At Emory

Postby badnights » Wed Feb 07, 2018 5:31 pm

I echo Steve in congratulating you. That was one brutal journey you made.

Clonazepam/Klonopin is addictive but some people have no problems with it. Others have a terrible time stopping it after only a couple of months on it. It all depends on your body chemistry, and there's no way to predict how your body will react, so I'd follow Steve's advice and not take it every night.

Also, it has an extremely long half-life - 40 hours or something but don;t quote me - which means it will build up in your system over time, and for some people causes unbearable next-day grogginess. Other people don;t seem to have an issue with that.

Your inability to sleep even when no symptoms are present that is manifesting itself is probably a part of the disease. There is a hyperarousal that most of us experience, that is very poorly understood, but preliminary research suggests there is an excess of glutamate in our brains (glutamate is an excitatory neurotransmitter in the brain - it encourages neurons to become active). Even more recent research suggests that a problem with our adenosine receptors is what causes this glutamate excess. Craziness!
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

Frunobulax
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Re: Starting At Emory

Postby Frunobulax » Wed Feb 07, 2018 6:44 pm

Rustsmith wrote:As for the Klonipin (aka Clonazepam), it is a benzodiazapine. And yes, the benzos are addicting. In fact, many report that they are even more difficult to get off of than the dopamine agonists, like pramipexole.


I took Clonazepam and Alprazolam, and can confirm that it's not easy to get off them. Alprazolam was worse for me, I took it for a month and stopped cold turkey. Over the next 3 weeks half of my nights were with less than 2 hours sleep, often no sleep at all. The other nights were maybe 5-6 hours.

I took Clonazepam for 2 weeks and tapered it. Sleeping was a bit harder during the tapering, but still possible. I still use Clonazepam now and then, I found that I can take it for up to 2 nights without paying for it later. There is some drowsiness during the day, but it's not worse than the usual exhaustion from RLS-marred nights.

Both did nothing against the urge to move, though. But part of my RLS is that I often can't sleep even though I don't have that urge, and both help a bit there - just a little bit. (Non-RLS patients report that both knock them out completely. For me the effect wasn't anything near a knockout.)


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