Quitting Neupro Cold Turkey

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IThinkImInTorture
Posts: 41
Joined: Thu Feb 05, 2015 2:53 pm

Re: Quitting Neupro Cold Turkey

Postby IThinkImInTorture » Mon Apr 03, 2017 2:41 am

10:39pm, My RLS came back so 4 x 50mg of Tramadol and 3x300mg of Gabapentin doesn't resolve my RLS symptoms in my legs after going to sleep. I guess I'll have to go back on Neupro.

legsbestill
Posts: 296
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Location: Dublin Ireland

Re: Quitting Neupro Cold Turkey

Postby legsbestill » Mon Apr 03, 2017 9:36 am

Sorry to hear it. Well done for experimenting - if nothing else you know what doesn't work for you. It does seem that, although they do help some, for the majority gabapentin and pregabalin are of limited value.

ViewsAskew
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Re: Quitting Neupro Cold Turkey

Postby ViewsAskew » Tue Apr 04, 2017 3:13 am

How long were you off the Neupro, IThinkImInTorture?
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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Re: Quitting Neupro Cold Turkey

Postby badnights » Thu Apr 06, 2017 9:07 am

Did you go back or did you hold off? It could have been a temporary fluctuation not a permanent re-worsening. Did you take any allergy meds? The older kind (first generation antihistamines) triggers strong RLS symptoms.

I don't think you answered my question - many posts ago - about getting your ferritin tested. Low ferritin in the blood has been correlated with two things: severity of RLS/WED symptoms, and liklihood of augmenting on Neupro and other DAs. It's very important for all WED/RLS patients to get tested for all iron measures, especially ferritin which is not usually tested for in iron panels. If your ferritin is less than 100, supplementing with oral iron can reduce or eliminate symptoms. For me, it reduces them, even when my ferritin is over 100.

When is your appointment, not until May? Do you still have a stash of oxycontin that you could use on bad nights?
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

leggo_my_legs
Posts: 117
Joined: Sun Oct 16, 2016 12:29 am

Re: Quitting Neupro Cold Turkey

Postby leggo_my_legs » Fri Apr 07, 2017 7:35 am

What awfulness that your cpap makes your rls worse! I have both sleep apnea and PMLS. My PMLS was only diagnosed because my doc ordered an in lab sleep test when I started suddenly removing my mask in my sleep after years of wearing it ok!

Now with the norco I take I don't remove my mask and I wake up in the same position I fell asleep in, which is a miracle. I gope you can get it straightened out.

IThinkImInTorture
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Joined: Thu Feb 05, 2015 2:53 pm

Re: Quitting Neupro Cold Turkey

Postby IThinkImInTorture » Fri Apr 07, 2017 11:54 am

Stable dosage: The 900mg of Gabapentin helps significantly with my RLS but again only if I keep taking Tramadol. I tried to take only 2 tramadol and my RLS symptoms came back. So, the stable dosage for me is 900mg of Gabapentin and 3x50mg of Tramadol.

QyX
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Location: Berlin / Germany

Re: Quitting Neupro Cold Turkey

Postby QyX » Sat Apr 08, 2017 1:31 am

150 mg of Tramadol is a very low dose. I do take an euqivalent dose of more then 2.000 mg Tramadol.

IThinkImInTorture
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Joined: Thu Feb 05, 2015 2:53 pm

Re: Quitting Neupro Cold Turkey

Postby IThinkImInTorture » Sat Apr 08, 2017 1:47 am

I spoke too soon. My RLS symptoms came back when only taking 3x50mg of Tramadol and 900mg of Gabapentin. I have taken my 4th tablet of Tramadol in an effort to get to sleep. My psychiatrist tells me the sky is the limit on Gabapentin as you can't take too much Gabapentin.

Rustsmith
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Re: Quitting Neupro Cold Turkey

Postby Rustsmith » Sat Apr 08, 2017 1:53 am

The sky is the limit on gabapentin because sooner or later the increases will hit a dose where you stop adsorbing the extra amount, so the extra pills literally become money down the drain. But that said, 900mg is still not a huge amount.
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.

Polar Bear
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Re: Quitting Neupro Cold Turkey

Postby Polar Bear » Sat Apr 08, 2017 12:38 pm

QyX - 2,000 mg.... that's a lot of tramadol. I understand that the max daily dose is 400 mg daily.

I now take 2 x 50 mg slow release Maxitram as part of my medication cocktail together with ropinerole and cocodamol 30/500.
Originally I was on 100mg x 2 daily Maxitram but was having random 'ticks' and mini hallucinations such as reaching into mid air for somethng that actually wasn't there, so it was reduced. I also take a very low 10mg dose of citalopram which interacts with tramadol but at low dosages my GP is happy with this prescription.
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
Posts: 41
Joined: Thu Feb 05, 2015 2:53 pm

Re: Quitting Neupro Cold Turkey

Postby IThinkImInTorture » Sun Apr 23, 2017 6:48 pm

Well, the stable dose for my RLS is 4x50mg of Tramadol and 4x300mg of Gabapentin. I have to take it 4 hours before I have to fall asleep and it wears off about 3am. I would like to have a 5th tablet of Gabapentin in my daily regiment but my Neurologist may not be supportive.

"Hello, It is not good to keep increasing your medication dosage just based on having difficulty sleeping for 1-2 nights. You are now taking 200 mg Tramadol and 1200 mg gabapentin at night now which is a very high dose for both medications. I recommend caution and trying to take less medication. Especially since higher dose of gabapentin wil lincreae your weight for sure, and wil lbe counter productive in long run."

IThinkImInTorture
Posts: 41
Joined: Thu Feb 05, 2015 2:53 pm

Re: Quitting Neupro Cold Turkey

Postby IThinkImInTorture » Sun Apr 23, 2017 8:12 pm

Though the 1200mg of Gabapentin and 200mg of Tramadol work to fall asleep I am delusioning myself to believe it is enough. I woke up at 3am as my RLS symptoms crept in again. And 3pm today I was lounging and my RLS kicked in. I need to take something from noon onward to help treat the RLS that kicks-in during the afternoon.

stjohnh
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Location: Palo Alto, California

Re: Quitting Neupro Cold Turkey

Postby stjohnh » Sun Apr 23, 2017 8:52 pm

Remember your goal is not complete elimination of symptoms but to make life tolerable. My symptoms start around noon if I lay down for a bit, not noticeable until about 5pm otherwise. From 5 5pm to 8 pm I pretty much need to keep moving to keep the beast at bay. I take my meds at 7:30pm (Mirapex, kratom, marijuana, and gabapentin). By 8 I am feeling better. By 8:30 I can watch TV sitting down. By 9 I am ready for bed. Sleepy and no leg jumping.
Blessings,
Holland

badnights
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Re: Quitting Neupro Cold Turkey

Postby badnights » Tue Apr 25, 2017 7:46 am

It sounds to me like your medication is not covering off your symptoms. As Hollland said, you don't want to aim for complete coverage, but you do need to get quality sleep time at night, and that's not happening. I can predict, though I'm not a doctor and have no medical qualifications, that even increasing your gabapentin dose will not be enough.

You need a doctor who has experience treating refractory WED/RLS. You need to commit to spending whatever money you have to, to get to such a doctor. Your life is worth it.

Hello, It is not good to keep increasing your medication dosage just based on having difficulty sleeping for 1-2 nights.
Did he really say that? I feel like punching him..... that's bad of me, of course, it's just his gaping ignorance, not maliciousness, so he doesn't deserve a punch. Just a slap.
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
Posts: 41
Joined: Thu Feb 05, 2015 2:53 pm

Re: Quitting Neupro Cold Turkey

Postby IThinkImInTorture » Wed Apr 26, 2017 6:40 pm

I am stable on 1200mg of Gabapentin in concert with 4x50mg of Tramadol as long as I don't get dehydrated. I do feel the Gabapentin truly wear off the following day around midday or late afternoon. I'm not sure if I'll entertain Mirapex for that.

Neurologists Response
Hello, prescripption for gabapentin 600 mg, 2 capsules in the evening was sent to your pharmacy today. If you have on-going and regular RLS symptoms during the afternoon as well, Mirapex or Requip with a low dose can be considered once in the afternoon as needed. 4/25/2017 11:48:46 AM >


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