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

[charles]

Greetings everyone (I'm a new nbr this week)

My WED began in 2003 with suttle , low grade discomfort in lower legs. At the time , I was able to overcome episodes by sleeping. Over the next few years, the discomfort gradually intensified until I sought physicians help, and was diagnosed with WED.
Fast forward to 2012 , and my WED is now 24/7 , each and every day without fail. Since my diagnoses , I have been prescribed: Alprazolam (xanax) , Requip, Rozerem, Zolpidem (ambien) , Lyrica (pregab) Nu-Iron (Feosol) and lastly , Hydrocodone 10/325.
With the exception of the hydrocodone , the meds have not been able to overpower the WED episodes. Requip works so-so, but has horrible side effects: immediate sweating , nausea, cramps/diarrhea , socially withdrawing , depression.
The side effects did not subside or lessen.
Finally began seeing a specialist who prescribed hydrocodone (for the past 4 yrs) which is effective each and every time , all the time , without fail, and no side effects at all. Unfortunately my specialist left the practice , and I've not been able to find a physician (yet) who will represcribe.
Fla is in the middle of a program to close "mills". Unfortunately , legitimate WED people suffer. I've been told by many physicians that WED is not a "condition" that warrants hydrocodone , and that you do not have "real" pain.
Many physicians have never been confronted with WED , and do not have a clue.
In a few weeks or so when the hydrocodone is depleted, my short term plan is to take Clonidine for about 10 days until the hydrocodone is out of my system. I don't look forward to this.
Well anyway,
Thanks
Charles

[Polar Bear]

Charles, have you read the RLS Medical Bulletin (see link in my signature). This is an excellent document for discussion with regard to medications. You could highlight certain areas for attention so that you and your doctor looked together at what is particularly relevant rather than plodding through the whole paper.

I am horror struck at the thought of a doctor not prescribing a medication that works well for you and that you have been using for 4 years.

[debbluebird]

First diagnosed in 1995 Arthritis became noticible
Started with Klonapin, worked for a year or so
Changed to Mirapex .125 mg twice at night, worked for many years, once in awhile would take an extra one or two
Sometime after 2005 MD started increasing Mirapex as symptoms got worse, got up to .5 mg twice at night, also had increase in arthritis, in knees.
Was put on Effexor for depression 2007, which made RLS worse, took awhile. to figure that out. 2 to 3 years
Had total knee replacements in 2009, RLS was severe, legs jumping a foot off the bed. Had symptoms while standing up.
Got off the Effexor
Placed on many drugs, don't remember doses, etc
Muscle relaxants gave me hallucinations, got lost in my bedroom going to the bathroom.
Taken off of mirapex, when they realized I needed a drug holiday, (augmentation)
Given Valium 20mg twice at night, started in hosp with knee surgeries, made me a zombie
Added Ativan helped
Added Oxycodone Helped
Started on Lyrica, off Valium, it was awful. lasted about 6 months
So at that time, Lyrica, ativan, oxycodone, remeron, three of these put 50 pounds on me.
Wanted to die, but didn't do anything about it.
Memory was affected, not sure with what, or if I had a TIA, still don't know for sure
Started on Methadone, got off of lyrica, oxycodone, remeron, restarted mirapex
Got fired from my job. I'm an RN. Memory was major factor.
Methadone caused extreme nausea, but reduced dose when I restarted mirapex. Didn't want to restart that.
Applied for disability, got it with social security, that was a miricle
Lost house, job, sold everything, lost everything
Methadone and mirapex worked for awhile, for the last year. Took oxycodone once in awhile, helps
Now having increased symptoms during the day, thinking it is the mirapex
Now trying an Inferential Stimulator, simular to TENS unit. Has helped, only been using it about a week.
Memory still bad, can no longer spell, have trouble putting thoughts together. Don't really remember doses, etc.
I don't know how I lived through all of this. I was going crazy. My poor husband has always been supportive. Bless his heart, he doesnt' get any sleep when I'm up.
Oh, have sleep apnea too. I still don't get much sleep. DEB

[glfngrl]

Have had primary RLS (don't llike new name, as it is not descriptive) for 51 years; onset with first pregnancy at the age of 22, although mother and grandmother both had what they called "heebie-jeebies"! Read an article in AARP magazine about the first clinical meeting that recognized the symptoms as a valid condition (RLS)...It fit to a "t"!! Up until that time, had spent many evening hours on the floor, trying to read or watch TV, as this was the only relief I could get. By the time I read the article, and found the RLS website and early discussion boards, I was getting desperate for a night without interrupted sleep, when I would get up, do leg lifts, jumping jacks, any kind of exercise that would let me get back to sleep, usually spending much of the night on the floor. The following is everything I have done since I found the discussion board.

Immediately started paying close attention to my diet and exercise habits, as well as other "tricks". This included very little caffeine, and definitley NONE after about 10 AM; limiting sugar and artificial sweetners (Had already noticed if I ate ice cream after lunch, symptoms were much worse!). Discontinued all antihistimes and decongestants; began to watch for other medicinal triggers - tylenol for more than 3-4 doses is one for me. Many early discussion board members were finding that hot baths worked wonders and they did/do for me. Learned that divesting myself of all tight-fitting clothing, even socks, immediately after dinner delayed onset. Changed my gym routine to mid-afternoon, rather than morning, and found also that too much exercise is as bad as too little. THESE ARE MY PERSONAL RLS RULES, AND I STILL FOLLOW THEM, although I am now on medications. I honestly think that continuing to observe them has kept my medicine dosages as low as possible, although I do have occasional times when I experience augumentation and have to up my dosage temporarily. (Usually when I simply HAVE to have a dessert after dinner, or have not been to gym regularly.) As I am sure all of you have discovered, if the symptoms ever get ahead of you, they are much harder to get stopped; so, I try my best to always take my medicine on time.

About the year 2000, my combined RLS, PLMD, along with developing secondary symptoms due to degenerative spinal discs, became so bad that my husband moved into the guest room so that we could both sleep better. (How many more of you have been there, done that?) Within a couple of years, I finally gave up and asked my doctor to give me the Requip starter packet. From the very first dose, relief, relief!

2002- present .....05 mg. ropinerole, taken around 8 pm
2005....added half of a 5 mg. hydrocodone, taken about 4 pm, earlier if symptoms started before then.
2010 - present...switched 4 pm dosage to 50mg. tramadol, when hydrocone started to irritate stomach. (My daughter just added tramadol around 5 pm, and it is working well for her, too.) This is my go-to med if I need extra help during arthritis flare-ups, stressful times, or bad weather (yes, low pressure systems make my legs worse, as well as very hot, humid days.)

I know I will eventually have to up my Requip dosage on a regular basis, but so far, only side effect seems to be a short stint of itching about 30 minutes after I take it - no rash.

Good luck to all of you.

[chefws]

Wow, ok, I'll try, lol. I've had WED since I was a child. I used to 'ride my bike' in bed by moving my legs around in the air to get to sleep, diagnosed in '96.
Sinemet. 6 mos, rebound/augmentation, psychological problems, bad side effects.
Permax/Klonipin. 1 year, no problem with Permax as yet, but Klonipin had me sleepy all day.
Permax/Xanax. 7 years. By the time Permax was pulled from the market, I had extreme rebound/augmentation though I just thought it was conditions of living.
In a 7 month period off of Permax, These is my list:
Requip 1mg Not Effective/Immediate augmentation
Mirapex 1mg Not effective/Augmentation/Insomnia 4 Months
Ambien ? Not effective 3 Weeks
Neurontin 1200mg Not Effective/No noticeable affect. Extreme daytime sleepiness/falling asleep during the day.
Percocet 10mg Effective 4 Months Primary Doctor said I was a drug seeker, and took me off. I needed 10 mg rather than the 5mg he gave.
Vicodin ? Not Effective, made me feel high 1 Week
Seroquil ? Extreme increase of symptoms 1 Day
Trazodone ? Triggers symptoms, non sedative 1 Day
Welbutrin ? Not effective Fail 3 Weeks
Zyprexa 5mg Not effective /Triggered Symptoms 2 Days
Lyrica 150mg Not effective/felt very high/may help PLMD 1 Month
Tramadol ? It was effective, but gave me a migraine. I tried to wait it out for a month, but I couldn't tolerate it.

I then went back to my stash of Permax, waiting for a major hospital/sleep clinic appointment. At the appointment, it wasn't with the sleep specialist, it was with screeners. I had to ask for Neupro, but they didn't know anything about it. After much discussion, I got it, unfortunately. Took it until it was recalled.

Neupro ? Extreme sleepiness at work, (I'm a chef and work in a hot environment, the heat gives too much med), mood changes, rash at application sites.

I got to a pain clinic with a sleep specialist, and got Oxycodone. By this time, I lost my job due to WED medication previously mentioned. Memory/Sleeping in my car on break/Talking back to Managers/co-workers, etc. I had to move out of state due to the loss of everything. My sister is in charge of licensing all Drug Rehab centers and the councilors in that State. She disagreed with the meds, strongly, and I submitted to Rehab due to depression and impending withdrawal fears. For 3 months, they tried everything under the sun non-narcotic with no success. Sis has a sleep doctor, and I insisted on seeing him. Sat for 1.5 hours with him, and he agreed I needed an opiate. Sis was furious, but I couldn't take it while in rehab. I didn't have a problem with over using my meds, and made sure I had documentation from both doctors I was seeing saying so before I moved.
Ok, out of rehab, moved back to try to save my home from foreclosure, wife has left for another guy Back to the pain clinic and regular doctor.
Pain clinic says I'm off oxy, so use Methadone.
Methadone ? 4 months It worked, but I was constantly sweating buckets just sitting around. No one would hire me, I looked like a junkie coming off a high.
Xanaflex ? 1 month Increasing dosage, but would wake up with my limbs numb. Clinic didn't know what it was, research on my part shows lack of oxygen.
Oxycodone 10mg It worked! It took months to convince them, but I finally did. Soon I couldn't afford to go anymore, so:
Alcohol I drank to pass out for a few months. Still on Xanax.

Back to Requip/Xanax presently. Rebound as of now. Went from .25mg to 1 mg in 4 months. Yeah, I know, I shouldn't be taking it, but primary doc won't prescribe an opiate. I am working again in a reduced capacity. I'm suffering memory problems, daytime sleepiness, blurry vision, smoking much more from the Requip. Reduced Xanax from 3mg to 1-2mg.
My sleep is off and on. I'll have to wait until I have some savings to go back to the clinic. I still owe them
Sorry for the rant, but knowing what I know, the best meds for me are Oxycodone 10mg and Xanax 1-2mg. And it's unavailable for me at this time.

Edit: Added Tramadol. There was another non-narcotic opiate, but I can't remember it's name.

[Polar Bear]

chefws: Glad to see you back with us but so sorry to see that symptoms continue to be bad with you. It must be so difficult not to have the medications available that you know will work for you. We often criticize our NHS system here in the UK but fortunately we do not have to have insurance for our medical care.

Please never apologize for having a rant...... we all do it.

[LyndaK]

Intermittant RLS since age 19. Refractory RLS currently. Tried:
Neurontin: 2 years. Now ineffective.
Lyrica: Max dose for 1 year. Too many side effects.
Sinemet: 6 months with augmentation
Oxycontin: lowest dose 2x day. Works like a charm but need to occasionally supplement with Tylenol.
Hopefully can stay on this without developing a tolerance too soon.
When RLS was intermittant, took magnesium. Worked very well for years.

[Bjorn]

Sinemet – wonderful drug at first. After about a month it turned into the worst drug ever! Horrible horrible augmentation.

Clonazepam – did nothing but make me stumble going to the bathroom at night.

Mirapex – been on it about 10 years. Works for me consistently. Also take one or two Tylenol #3’s which helps keep the Mirapex dose down. Now I’m having some Mirapex side effects so I’ll have to cut back on it. Not looking forward to that at all.