Quitting Neupro Cold Turkey

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.

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badnights
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Re: Quitting Neupro Cold Turkey

Postby badnights » Tue Mar 28, 2017 5:02 pm

I currently don't use the CPAP machine as it is uncomfortable and it makes my RLS worse
This is a bit chicken-and-egg. Your mask will drive you nuts if you're having WED symptoms. Your RLS/WED needs to be controlled before you;ll be able to lie there with a mask on. Steve is right, you need to see someone familiar with both WED/RLS and SA.
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

badnights
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Re: Quitting Neupro Cold Turkey

Postby badnights » Tue Mar 28, 2017 5:06 pm

It sounds like you can make a return trip to the pain center after you;ve given the gabapentin a fair trial. If it's not working and you're using your PAP machine, they should reconsider. While you wait for an appt at Johns Hopkins.

I don't know why most doctors don't appreciate the devastation caused by inadequate sleep. I think it's because they imagine that we will simply fall asleep if we get exhausted enough.
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
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Re: Quitting Neupro Cold Turkey

Postby legsbestill » Tue Mar 28, 2017 6:14 pm

I feel your pain. In a mirror of your situation, though with less severe symptoms, I was diagnosed with central sleep apnea after a sleep study recently.

It was attributed to my OxyContin use (which I was taking for my rls) and my sleep consultant, who believes that it is not possible to augment on neupro (rotigotine - slow release version of ropinerole) and doesn't believe in opioids for rls used it as a reason to insist I stop taking OxyContin and just use neupro.

She tells me the apnea is relatively mild 'at this stage' and should be fine if I stop using OxyContin. I guess I am lucky not to need a mask provided I stop taking Oxy.

I am wholly convinced that I will augment on neupro and really want to use it intermittently at most so that it remains effective for me for as long as possible. It was at that point that I ordered my first batch of red vein Borneo Kratom. I understand (hope) it is not as directly implicated as a cause of central sleep apnea as opioids.

It was such a blow to learn that there was a counter-indication to the OxyContin as I believed at the time I had devised a relatively effective regime for my rls. It sounds like a central sleep apnea specific mask might be the way to go for you. At least it will enable you to continue the opioids.

IThinkImInTorture
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Re: Quitting Neupro Cold Turkey

Postby IThinkImInTorture » Tue Mar 28, 2017 6:34 pm

I had two sleep studies done, one at Virginia Hospital Center which was inconclusive. So my doctor sent me to a "better" sleep center, American Sleep Medicine in Tysons Corner, VA who said I have severe sleep apnea. I don't trust the results.

Rustsmith
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Re: Quitting Neupro Cold Turkey

Postby Rustsmith » Tue Mar 28, 2017 8:32 pm

You could be correct in your skepticism of the results. My first sleep study said that I had sleep apnea and recommended the use of CPAP, which they wanted to sell to me. I accepted the results, but bought my machine from an online supplier for much less. About a year later I finally got the detailed results of my study when I tried to join the RLS clinical study at Johns Hopkins. That was when I found out that the doctor had rounded my AHI number up so that I would qualify for insurance coverage. He also "forgot" to mention that I had been diagnosed with UARS (Upper Airway Restriction Syndrome) and not obstructive sleep apnea. He did that because insurance will not cover CPAP for UARS. So he fudged the info in his report in an attempt to sell the machine.

I still use the machine when I am at home, not because I need it but because my wife says that it has stopped me from snoring.
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.

QyX
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Re: Quitting Neupro Cold Turkey

Postby QyX » Tue Mar 28, 2017 9:53 pm

Generally a doctor doesn't want to prescribe a med that could enhance central apneas, but when the choice is the med or a patient who is either insane or who becomes so depressed that suicide becomes a very real option, it is time for that doctor to reexamine their normal practices.


Always this black & white thinking!

It's not that he is like going to take 100 mg of Oxycodone at night.

They must know that side effects and problematic interactions also depend on dose.

Looks like this is going to be a longer battle.

Stay strong!

ViewsAskew
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Re: Quitting Neupro Cold Turkey

Postby ViewsAskew » Wed Mar 29, 2017 12:14 am

My first sleep study was in a maternity ward - no I was not pregnant, nor had given birth - but that was where they had an empty bed. Two technicians set up outside my room and watched for....apnea! That was ALL they wanted to see and when my PLMS started and I had an awakening, they didn't even bother to notice that I hadn't stopped breathing. They woke me, put on a mask and said I'd be so much happier now. NOT.

The doctor who read it called them imbeciles and didn't even bother to schedule a second test. In that short time, he could see I'd had many movements - severe, IIRC - and treated me appropriately.

Apnea is the disease of the decade at least in terms of sleep. The techs are sure we all have it...even when we do not.
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.

IThinkImInTorture
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Re: Quitting Neupro Cold Turkey

Postby IThinkImInTorture » Wed Mar 29, 2017 12:16 am

This gambentin and ultram are a good combination. 300mgx1 and 50mgx4 respectively.

badnights
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Re: Quitting Neupro Cold Turkey

Postby badnights » Wed Mar 29, 2017 5:58 am

Only 300 mg gabapentin and you feel it's helping! That's great
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: Quitting Neupro Cold Turkey

Postby Polar Bear » Wed Mar 29, 2017 11:35 am

ITIIT - Are you taking the gabapentin 300mg and Ultram 200mg at the same time.
So glad you've had some relief.
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

IThinkImInTorture
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Re: Quitting Neupro Cold Turkey

Postby IThinkImInTorture » Sat Apr 01, 2017 4:27 am

Well, 5 days on 300mg of Gabapentin with 4 x 50mg of Tramadol and I already asked my neurologist if I can increase the dose to 600mg per day of Gabapentin. He agreed and tonight I took 600mg of Gabapentin and 4 x 50mg of Tramadol at 5pm. At 1030pm I got out of bed and apprehensive to go back to bed as my RLS symptoms in the calves have come back. Should I go up to 900mg?

badnights
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Re: Quitting Neupro Cold Turkey

Postby badnights » Sat Apr 01, 2017 5:10 am

900 is a reasonable dose, and people go higher. I was using 1800 a day at one point I think. I question how much good it will be to you if you have to raise the dose so much already.
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

IThinkImInTorture
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Re: Quitting Neupro Cold Turkey

Postby IThinkImInTorture » Sat Apr 01, 2017 5:08 pm

Its noon on Saturday, was laying down watching a movie on my phone and possibly falling asleep and I had to get up as my RLS in my calves kicked in. So, I took 4x50mg of Tramadol and 3x300mg of Gabapentin, increasing the dose to 900mg of Gabapentin per day. I took them at 1pm instead of the evening.

badnights
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Re: Quitting Neupro Cold Turkey

Postby badnights » Sun Apr 02, 2017 9:14 am

All of it? Will it last through the night? Splitting it might be better, bear with some symptoms earlier in the day and save most of it for before bed? How did it work out? How do your symptoms compare to before you quit the Neupro? Are you feeling better in other ways?
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

IThinkImInTorture
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Re: Quitting Neupro Cold Turkey

Postby IThinkImInTorture » Sun Apr 02, 2017 10:02 am

I felt really tired eventually fell asleep and woke up at 5pm just in time to take my wife out to dinner for her birthday. I noticed that I didn't feel antsy, I could sit at the table after eating and talk more for a while. When we got back home, paid the baby sitter I went to bed with no problems. I woke up at 530am with a killer headache which I never get as I quit caffeine and alcohol years ago. Could be allergies as the pollen is peaking slowly here in Virginia. I just cleared my sinuses with water and I got a nose bleed which I don't get. So maybe the gabapentin thins the blood? I didn't take my evening dose of bp med as I messed up my evening routine. My bp with the meds is 150/120. My headache is going away as I right this. I had a tall glass of water. Its dry in the house.

The Gabapentin does lower your mood, more solemn. Coincidentally I was walked out of work on Thursday 1pm so solemn I feel as a result but I am bouncing back. It is the end of the month too so my health insurance expired then.

The 600mg doesn't work so I'll take the 900mg with tramadol this evening instead of in the middle of the day. I have been emailing my neurologist at each decision to up the dose. It is Sunday so I haven't heard back from him as it is the weekend. I shall see what he says about going further to 900mg.


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