WED MEDS: LIST OF ALL YOUR WED MEDS FROM DAY 1 TO PRESENT

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.
Laurachrissy
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WED MEDS: LIST OF ALL YOUR WED MEDS FROM DAY 1 TO PRESENT

Postby Laurachrissy » Thu Nov 10, 2011 12:57 am

It is getting clear how we that are stricken with WED have other similar ailments.
Well can we all list all WED meds. present and go back to the first meds. Maybe we will see a pattern perhaps. I will go first.

1. Mirapex 1 week
2. Neurontin 600mg
3. Klonopin 2 yrs. edit: sleep



........next
Last edited by Laurachrissy on Wed Dec 07, 2011 10:39 am, edited 2 times in total.
RLS sux

Polar Bear
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Postby Polar Bear » Thu Nov 10, 2011 1:29 am

1 Requip - 4 years to date
2 Codeine - a few months, only for emergency situations like
long journeys.
3 Tramadol - 2 years to date
4 Sleeping meds (various) - 2 years
5 Amitriptyline - 3 months to date - for fibro but helps
sleep. with diaz for occasional use when desperate for sleep.
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

Laurachrissy
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Joined: Thu May 12, 2011 5:11 pm

Postby Laurachrissy » Thu Nov 10, 2011 2:39 am

Ok, I see I need to edit my post and add the sleep aids.
RLS sux

badnights
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Postby badnights » Thu Nov 10, 2011 8:28 am

are we putting what's working now, or everything we've ever tried?
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Laurachrissy
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Joined: Thu May 12, 2011 5:11 pm

Postby Laurachrissy » Thu Nov 10, 2011 10:38 am

Everything you ever tried......it might be enlightening for someone to see what a lot of us tried in the beginning, how WED progresses as well as our medication therapy. Edit: I had never heard of augmenting and to me it looks like Requip is the worst, idk..just interesting.
Last edited by Laurachrissy on Wed Dec 07, 2011 10:41 am, edited 1 time in total.
RLS sux

sleepdancer
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RLS/WED Meds

Postby sleepdancer » Fri Nov 11, 2011 5:28 am

1. Sinemet 3-4 years Augmentation & side effects
2. Mirapex 5 years Augmentation & decreasing effectiveness
3. Neurontin 3 years Concurrent with Mirapex, ineffective
4. Ropinerole 2-3 years Severe augmentation & side effects

Off all meds for RLS/WED & PLMD for 1 year. Now use a TENS Unit for nighttime symptoms.

ViewsAskew
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Postby ViewsAskew » Fri Nov 11, 2011 11:32 pm

For anyone reviewing these, please keep in mind that there are many variables that we're not accounting for - the severity of the WED, if we had doctors that were capable of treating, whether what we took helped, if the WED is painful or electrical, if there are PLMs are part of it that factor in, other conditions that affect the meds we take, and many more.
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.

moonlight
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Postby moonlight » Sun Nov 13, 2011 10:07 pm

codeine for around 2yrs works well take at night

diazepam
temazepam both for mh illness but use for rls to knock maself out
when the rls is too much
sleep is not only a dream

Laurachrissy
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Re: RLS/WED Meds

Postby Laurachrissy » Tue Nov 15, 2011 6:00 pm

sleepdancer wrote:1. Sinemet 3-4 years Augmentation & side effects
2. Mirapex 5 years Augmentation & decreasing effectiveness
3. Neurontin 3 years Concurrent with Mirapex, ineffective
4. Ropinerole 2-3 years Severe augmentation & side effects

Off all meds for RLS/WED & PLMD for 1 year. Now use a TENS Unit for nighttime symptoms.


Why have you Augmented on all the meds? That's scary.....did you have low ferritin? Are you primary or idiopathic?
Also, sorry, do you place your TENS on your lumbar spine? For how long b4 the legs stop and you can sleep?
Omgosh! I gave you a list.
RLS sux

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Neco
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Postby Neco » Fri Nov 18, 2011 3:10 pm

Hrmm.. this is kind of hard for me because my memory is shot thanks to all the "fun" I had early on. Everything is a haze :?

Best I can do is a straight on/off/on again list.. Starting from 21, about 8 years ago now I guess.

1)Hydrocodone
2)Sinement (Horrible Augmentation)
3)Hydrocodone!
4) Forced 2wk Requip /Ambien trial to rule out drug seeking
(Did not make it to augmentation, but side effects too severe)
5) Hydrocodone :)
6) Trying something new. Hydrocodone / Tramadol
7) Oxycodone - marginal success, same control problem
8) Hydrocodone / Codeine back and forth for a while
9) Mirapex (24 hours of augmentation on first dose)
10) more Hydrocodone
(about this time several more Sinemet attempts on my part)
11) Eventually reach the point where we're both frustrated, start lobbying Dr for Methadone and finally succeed upon presenting RLS research.
12) Methadone - Better, stable for a while but still have control problems.
13) Methadone - Come up with a new plan, someone else holds my pill bottle. Been stable for almost 3 years and 1 doctor later.

Well, that's the short version anyway.
I have Primary Refactory RLS. Not sure how Mayos categories will change with the name change though.

Polar Bear
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Postby Polar Bear » Fri Nov 18, 2011 8:12 pm

Zac, glad to hear from you.
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

Pairodocs
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Location: Virginia

Re: WED MEDS: LIST OF ALL YOUR WED MEDS FROM DAY 1 TO PRESEN

Postby Pairodocs » Mon Apr 23, 2012 6:30 pm

1. requip - 1 yr ; severe augmentation and pain
2. mirapex - 2 weeks; immediate augmentation
3. gabapentin - 1 month; severe headache
4. Lyrica - 2 weeks; kept reducing dose util no headache but ineffective
5. hydrocodone - 4 yrs; wonderful efficacy and no side effects but finally reduced effectiveness.
6. maybe Horizant?

Wayne
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Re: WED MEDS: LIST OF ALL YOUR WED MEDS FROM DAY 1 TO PRESEN

Postby Wayne » Mon Apr 30, 2012 11:19 pm

1. Requip - 1 month; no effect on WED, side effect nausea
2. Mirapex - 1 month; no effect on WED, no apparent side effect
3. Xanax - 2 years; worked great on WED, started sleeping somewhat normally again, no side effects
4. Gabapentin - 2 years; first 3 months, worked great, side effect; slight vertigo at first but subsided, constant drowsiness all the time; stopped working, increased dosage, no effect, resumed Xanax with the Gabapentin.
5. Klonopin - 1 year; current med; taken at bedtime. almost normal sleep. Reduced gabapentin to one 300mg dose in the evening hours.

Current condition: No medication taken during the daytime hours, have WED sensations, but just ignore them. Medication is taken in early evening at at bedtime. Result: Awake and alert during the day, even able to nap occasionally and take medication only in the evening.

badnights
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Re: WED MEDS: LIST OF ALL YOUR WED MEDS FROM DAY 1 TO PRESEN

Postby badnights » Sat May 05, 2012 8:27 am

  • ropinirole -Nov 2008 to 2.5 mg - augmented horribly, starting the first week
  • pramipexole -Jan 2009 to 2? mg- too sleepy daytimes
  • ropinirole (doc didn't know what to do) - Feb 2009- augmented
  • gabapentin - Mar 2009 600 mg raising to 1200mg- dulls sensations but leaves the urge to move untouched
  • gabapentin + codeine -June 2009 rasing to 900-2400 mg and 150-180 mg - mood swings including suicidal depressions, increasinly ineffective (disease progression?)
  • oxycodone - Feb 2010 4 wks 5mg - I would have been dead if I had not found pramiopexole refills. Worst ever, 24hr arm-leg hell.
  • hydromorph contin - Mar 2010 - rasing dose form 9 to 15-18 mg. Currently 15 mg most days, 18 every 3rd day plus:
  • added zopiclone (hypnotic for sleep) 7.5 mg - added Jan 2011
  • added levo-carbidopa 25/100 (regular) - added 2011 - for fast relief of daytime symptoms and nighttime breakthorughs
  • added levo-carbidopa 25/100 (continuous release) - added Jan 2012? - to try to prevent nighttime breakthroughs
  • PLus I have pramipexole for emergencies but I am beginning to trust the system to take care of me...
Plus I take meds for sciatica and asthma. Before 2007? Nothing ! no meds at all! ever!!!!
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

lyneg
Posts: 2
Joined: Fri May 11, 2012 5:58 pm

Re: WED MEDS: LIST OF ALL YOUR WED MEDS FROM DAY 1 TO PRESEN

Postby lyneg » Sat May 12, 2012 1:57 pm

Hi,

Will try to remember the list.

Quinine- severe allergic reaction, took 2 days then stopped because I was allergic to the med.
Sinemet: lasted 6 months
Neurontin: 1 day, passed out, 1 hour after taking the med.
Went back to Sinemet until Mirapex came out
Mirapex (1mg) and clonazepan (1mg):present. Stiff legs in the morning.


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