Hello - I am new to the site. Horizant Question

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EllenSpoehr
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Joined: Fri Aug 26, 2016 11:50 am

Hello - I am new to the site. Horizant Question

Postby EllenSpoehr » Sat Sep 23, 2017 1:14 pm

Hello All:

I am new to this site and have had RLS going back as far as I can remember but have been on Ropinorole for over 15 years. My symptoms became intolerable when I was pregnant with my daughter who is now 19. There have been many nights (car and plane rides, meetings, etc.) where I have felt that I just can't take it anymore, but I keep plugging along hoping that new meds/treatments will be found. RLS has taken away so many things from me - dinners out, movies, evening time with family, etc.

I am now at the stage where I must go off of the Ropinorole as it is no longer effective ( 2 dosage increases in the last 6 months) and I am experiencing augmentation, I think. I have seen a new sleep specialist in my area and I am going to try Horizant (IF my insurance company is willing to pay for it...and this is a BIG IF). I am very worried about this as it seems that Horizant seems to have its own set of horrible side effects. When and if this happen I will be tapering off the Ropinirole as I introduce the new drug.

Has anyone done this? Is so, could you tell me how it went? I will need to plan this carefully around my work/travel schedule and would appreciate any advice. Thank you!

Rustsmith
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Re: Hello - I am new to the site. Horizant Question

Postby Rustsmith » Sat Sep 23, 2017 7:13 pm

Welcome to the site EllenSpoehr but I am sorry that you have to be here.

Although my experience with pramipexole and Horizant are not completely applicable to your situation, I may be able to provide you with some useful info. When I augmented on pramipexole and later on rotigatine (Neupro), I was taking gabapentin to help prevent my migraines and hoped that it would help with my RLS. I found that even high doses of gabapentin did very little to control my RLS movement symptoms, especially while I was deep into augmentation. But it did help with the insomnia side of my RLS, in fact it is still far more effective for me than any of the typical sleep aids. My doctor suggested that I try Horizant and I found that at least for me, Horizant was no more or less effective than gabapentin. Horizant is a modification of gabapentin that helps improve adsorption into the blood stream and once the Horizant is in the blood, it becomes gabapentin. So if you insurance will not pay for Horizant, give gabapentin a try because it is FAR less expensive. Everyone experiences side effects of meds differently. For me, the only side effects with gabapentin/Horizant have been sleepiness (good thing if taken in the evening), a loss of emotions when I was taking too much and an inability to achieve orgasm that was also an indication that I was taking too much. Cutting back on my dose has fixed the last two issues. I should also add that it is far and away the most effective migraine prevention med that any of my doctors have ever given me.

As for getting off of ropinorole, that is going to be difficult for you if all that your doctor is willing to provide is Horizant because it will not cover the symptoms of withdrawing from ropinorole. Only a moderate to strong opioid will cover the sleep issues you will experience. What you can expect without an opioid is a period of five to seven days of virtually no sleep at all. After that, you will start to get slowly increasing amounts of sleep. For many who take this approach, it will be between two and four weeks before you return to your new post-ropinorole "normal", whatever that is. If you search some of the past discussion threads about getting off of any of the dopamine agonists, you will get an idea of what you can expect if you cannot get short term use an opioid. With an opioid to cover the symptoms, withdrawal from ropinorole is fairly simple for most.

Since you indicate that you need to plan around work/travel, it sounds like you need to take the opioid route. Since non-RLS specialist doctors are currently very hesitant to prescribe opioids, it would probably be a good idea to go in prepared. The latest issue of Nightwalkers from the RLS Foundation has a number of good articles that could be of use in this discussion, so that alone might be worth the cost of joining. You could also probably find something of use in the augmentation articles in the links in "badnight"'s signature. Other potential sources are the discussion threads in the Augmentation forum and Dr. Buchfuhrer's Q&A's at the Southern California RLS Support Group at http://www.rlshelp.org/
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.

EllenSpoehr
Posts: 6
Joined: Fri Aug 26, 2016 11:50 am

Re: Hello - I am new to the site. Horizant Question

Postby EllenSpoehr » Sat Sep 23, 2017 9:25 pm

Steve:

Thank you so much. I was a little concerned when my doctor did not offer an Opioid or other strong sleep medication as an option when I attempt to taper down and off the Ropinorole. The mere thought of having night after night of symptoms is terrifying as I would be truly unable to even lay down. Lack of sleep makes my RSL significantly worse so I see a horrible cycle potentially happening. I am now concerned that he does not have enough expertise in RLS - his practice partner is listed on this site. I have never gone even one day without the Ropinorole in the last 15 years.

The links you provide were very helpful. I have realized that I can no longer manage this on my own (with just my primary care doctor) and am hopeful that I will be able to do this.

Ellen

ViewsAskew
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Re: Hello - I am new to the site. Horizant Question

Postby ViewsAskew » Sat Sep 23, 2017 10:09 pm

Hi Ellen - so many of us here have done this - you can, too. It may take a doctor change, it may take some doctor education, and it may include some uncomfortable days. It WILL be worth it. Depending on what the doctor (this one or a different one) will do, you may have a few nasty nights or many. Either way, once you get on the other side of it, you will be very happy. Truly. I would be lying if I said this would be easy - it likely will not be, but may not be horrible, either. It varies from person to person.

How much ropinerole are you taking now? And, in a single dose or multiple doses?
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: Hello - I am new to the site. Horizant Question

Postby Rustsmith » Sat Sep 23, 2017 10:52 pm

Ellen, one resource that many of us have found to be very helpful is a book titled "Clinical Management of Restless Legs Syndrome" by Henning, Buchfuhrer and others. It costs about $30 on Amanzon. If you get it make certain you get the Second Edition. The book was written for doctors, but is understandable is easily understood by those of us with RLS. It can also be particularly useful to help educate your doctor (if he/she is willing to learn). Some of us have bought 2 copies and gifted the second copy to our doctor.

The other resource if you find that you need to change doctors is the RLS Foundation's list of Quality Care Clinics. You can be certain to get the best of care at these facilities. A number of us have to travel long distances (in some cases across the country) but in the end find that it has been worth the time and expense.
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.

legsbestill
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Location: Dublin Ireland

Re: Hello - I am new to the site. Horizant Question

Postby legsbestill » Sun Sep 24, 2017 11:30 pm

I cannot add usefully to what Steve and Beth have said but just wanted to let you know that you have my respect and admiration for educating yourself about what needs to be done for your RLS. Very best of luck with the next step.

badnights
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Re: Hello - I am new to the site. Horizant Question

Postby badnights » Mon Sep 25, 2017 4:26 am

Ellen, you'r approaching this the right way, by learning as much as you can before you tackle the actual withdrawal. I have to say, any doctor who would allow you to withdraw from ropinirole after 15 yrs on it - with the dose increases you mentioned, I'm going to assume you're well over the recommended maximum for RLS/WED patients of 1 mg - that doctor does not have the necessary understanding of the effects of withdrawal to treat you properly. That doctor would be putting you through unnecessary torture.

That said, it can be done and has been done by people without opioids. So if it comes to that, it is definitely do-able. In either case - whether you find a doctor with experience or have to stay with the one you have - either way, I strongly advise you to take at least a week off work. You'll be useless anyway, likely, so remove the stress of having to be somewhere.

Whether you taper or go cold turkey depends a lot on your current dose. A taper is probably better from higher doses. But there's a lot to be said for ending the taper and going cold turkey once you get down to a certain point, because the torture level maxxes out/ The best thing you can do then is reduce the duration of the suffering. The sooner you stop completely, the sooner your body can recover.

I am not that familiar with tapering withdrawals, though other members here have done them. But generally, with cold turkey quits, you shouldn't expect to sleep at all for 2 or 3 days. That's torture in itself, but on top of that you will be experiencing intense symptoms almost non-stop. IF you are mentally prepared for this, you won't succumb to the temptation to take some ropinirole to make it all go away - -leaving you in the same situation you're in now, which you've decided is unacceptable. In the midst of it, is't hard to remember your reasons and impossible to think clearly, so prepare yourself.

After about 3 days, you start to see the light at the end of the tunnel. You get some sleep. Your body is regaining control over things and the torture eases up.

I do hope you pursue the options the others have mentioned for finding a physician with experience in treating augmented WED/RLS. It is NOT a simple exercise, and every patient is different, so your best doctor will be one who has seen lots of patients and gained a wide variety of experience. Check the link in my signature block (below every one of my posts) for some links to material that you can print and bring to your doctor. You can say that you came across this information and you'd like his opinion on it.

I wish you the best of luck, Keep us posted and keep asking questions!
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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Re: Hello - I am new to the site. Horizant Question

Postby Polar Bear » Mon Sep 25, 2017 6:04 pm

badnights - this is a wonderfully descriptive post. Exactly what is needed for someone considering the stopping of a DA.
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

EllenSpoehr
Posts: 6
Joined: Fri Aug 26, 2016 11:50 am

Re: Hello - I am new to the site. Horizant Question

Postby EllenSpoehr » Tue Sep 26, 2017 9:58 am

Thank you for all of your wonderful support and suggestions. I am currently taking 3 mg of Ropinirole and often have to take another .5 or 1 mg because of the increased symptoms. (One night a few weeks ago I took almost 6 mg because I was being driven crazy - and I paid dearly for that the next day.) I took 1.5 for many years and then things started going downhill over the last 6 months - hence my new predicament and desire to change medications.

My new sleep specialist just checked my irons levels and it seems that my Ferritin is slightly low and he is recommending iron supplements as well. I have done some reading about iron levels and RLS but I honestly don't know enough about this either.

I did reach out to my new doctor with my concerns about needing additional temporary sleep meds during the transition - waiting to hear back. Still no word on the Horizant either but is does sound like Gabapentin may be another option.

Believe it or not I still have nightmares about my RLS symptoms during pregnancy (I didn't sleep for almost 7 months) and the mere thought of experiencing this again is truly frightening. That was the start of this RLS hell...that I wouldn't wish on my worst enemy - not that I have any ;-)

Ellen

legsbestill
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Location: Dublin Ireland

Re: Hello - I am new to the site. Horizant Question

Postby legsbestill » Tue Sep 26, 2017 9:18 pm

Worst enemies may not be bad enough to have rls wished on them but there are some medical professionals out there who might benefit from a temporary insight into the tortures of it ...

ViewsAskew
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Location: Chicago

Re: Hello - I am new to the site. Horizant Question

Postby ViewsAskew » Wed Sep 27, 2017 2:31 am

legsbestill wrote:Worst enemies may not be bad enough to have rls wished on them but there are some medical professionals out there who might benefit from a temporary insight into the tortures of it ...


Just five minutes....
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: Hello - I am new to the site. Horizant Question

Postby badnights » Wed Sep 27, 2017 6:11 am

Ellen
I don't think you need extra sleep meds during the withdrawal phase. Your sleep is impacted because of the frequency and intensity of symptoms. If those are dealt with, your sleep will follow. If, on the other hand, you take sleep meds when the symptoms are active, you will suffer badly with a brain that's falling asleep and a body that needs to walk or jump; and the sleeping pill, by causing relaxation, can actually bring on the symptoms. It is no use taking sleep meds unless the sensory/movement symptoms are under control.

Your ferritin should be over 100. AT LEAST over 75, preferably 100. Some labs will tell you 20 is normal, but WED/RLS patients need more - 100 is said to be a good level. Did something happen 6 months ago that would have cause you to lose a lot of blood, or caused your iron levels to drop? Did you suddenly have gastrointestinal problems that might have impacted iron absorption into your body?

Re nightmares about bad RLS - just keep reminding yourself that the more ropinirole you take, the more suffering you are buying for yourself. What you don't feel now, you will feel later. Conversely, if you can lower your dose back down to 2 mg, say, then the suffering you feel now, as you lower, is suffering you won't have to feel later; you will have bought yourself some relief.

Have you accessed any of the material in my signature link? There are a number of warnings there written by doctors - specialists in WED/RLS augmentation - that patients withdrawing from DAs should be put on a potent opioid for the duration of the withdrawal, in order to avoid causing them grave suffering. Those writings would be useful for you to bring to your next appointment. Gabapentin or Horizant will not likely make much of a difference during the withdrawal, though one might be fine for after.
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


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