I'm scared. Please help.

[Rachel]

I have my appt. with the RLS doctor in about 8 hours.

I'm pretty sure I'm augmenting on my Mirapex again. The last time the doc put me on Requip for a drug holiday. The Requip worked but made me so nauseous. I just don't want to go back on the Requip.

I'm so scared right now sitting here. What if my doctor isn't as good/understanding/knowledgeable as I think he is?

I've been so fortunate. I've never gotten to the stage where DA's haven't worked!!!

I'm a teacher. What if he gives me something so powerful that I can't think to teach right?

I'm scared of this disease. But I'm more scared that I will walk out of the doctor's office back to feeling hopeless. What if he tells me he can't help me? What if he turns into a jerk like some of the doctors that I read about here?

In my head I know these thoughts are irrational. But there's always that fear and I hate it.

Someone please talk to me.

Rachel

[SquirmingSusan]

Rachel,

By now you've had your appointment - how did it go? I can sure understand why you wouldn't want to go back on Requip - I had a terrible experience with that drug.

There are many other options besides the DAs, and some can be quite effective with not a lot of side effects.

Be sure and read the Mayo Clinic Algorithm and arm yourself with knowledge. That way you can advocate for the best treatment for yourself.

Susan

[Rachel]

Hey Susan,

It didn't go as badly as I had expected, but it was . . . interesting.

Coincidentally, I thought I could refill my Ambien the night before, get to the pharmacy, NO MORE REFILLS! Absolute panic.

Go home, take 1200 mg of Neurontin because I know it will help me sleep. Well, I knew wrong. I was up most of the night.

So I go into the appt. with no sleep and still hung over on Neurontin.

I think I actually had the guy worried. He kept telling me he's never seen me like this before. I felt like I was drunk from the Neurontin and lack of sleep. And then I would get all mopey because the test results had come back normal and I wanted them to be abnormal so I least I could call this pain something. I told him to cut off my legs and left arm because I just didn't want RLS anymore. He declined.

So anyways, here's what he did. And I am telling anyone who reads this they have my permission to get technical with me about my dosages, my new cocktail, their opinions, etc.

1. I am still on the Ambien CR. Even though I kept waking up the last 4 weeks, he doesn't want to give up on it. Plus, we've already tried Lunesta and Sonata.

2. He said I am still on a low dosage of Mirapex (.50) . I am now going to set an alarm that goes off in my classroom around noon to remind myself to take .25 and then around 4:00 p.m. take .50

3. He also added Darvocet. He told me Darvocet will stop the twitching of RLS and may help me sleep. Here's where I got blurry during the visit because I again felt so drunk. So I'd like to know from others how Darvocet has worked for them.

I left feeling like I still trust him. Thank God.

He actually gave me his cell phone number so the next time I'm at the pharmacy and realize a prescription has run out, I could just call him. I thought that was cool.

The only time I got pissed at him was when he told me he "wasn't impressed" with the fibromyalgia diagnosis of my chiro. So I snapped back at him what else is there? I don't have RA, lupus, nerve damage, MS, MD, thyroid, kidney damage, liver damage, osteoporosis to explain this mysterious burning pain in the left side without the twitching. Boy, was I mad. He'd never seen me like that before. He changed the subject.

So it's 2:00 a.m. and I'm again not sleeping. However, I'm not in as much pain which I am assuming is the Darvocet.

So it continues. I'm relying on you non-rookies out there to give me your opinion about the new meds. Although if I wanted a cocktail, I would rather have vodka and cranberry juice.

Thanks for listening,
Rachel

[Juska]

Well darvocet is like vicodin, i think it is an opiate as well. but thats about all i know.

[dogeyed]

Darvocet is about half as powerful as codeine, both opiates. I take codeine and it completely controls my RLS, for three years now. Opiates is one of the four classes of medicine used to treat RLS. You were fortunate to come across a doc who is willing to try that with you. Could be you won't have to take anything else but that for relief. My codeine I can't take after supper, because it keeps me up. Otherwise I sleep well.

[Neco]

Not really sure what to say here. I can tell you though that I took a trial pack of Mirapex once and the very first dose had me miserable well into the middle of the next day. As for taking Requip vs. that I'm not really sure what to think. Common sense tells me substituting one DA for another isn't going to do much, but my knowledge of them is pretty much infinitesimal compared to painkillers.

Like has been said about the Darvocet, it is an opiate painkiller. It works pretty much just like Codeine or Vicodin and all the heavier stuff, only it's comparatively weaker.

You need to be careful about how much you are taking though, because Darvocet contains acetaminophen, which is bad for your liver in high doses, especially when you have to take it chronically. Other than that just watch how much you are taking, as it is one of the ridiculously easier opiates to overdose on.

Following the dosing rules you will be fine though, so don't freak out about that unless for some reason it stops being as effective as you need it to be. If that ever happens tell your doctor immediately and ask for a near similar strength alternative painkiller (Ultram, Codeine, etc)

[Walking After Midnight]

You need to be careful about how much you are taking though, because Darvocet contains acetaminophen, which is bad for your liver in high doses, especially when you have to take it chronically.

Just wanted to jump in and say my wife and I went to a friend from work's wife's funeral on Saturday. She was 37 and she died from the effects of chronic Acetaminophen use. She had what almost sounded like an open prescription for Vicodin, plus she was taking over the counter Acetaminophen on top of that for quite some time. I didn't ask why. She left behind two little girls ten and twelve. Her brother in law told me that they brought her into the hospital a week before she died and couldn't really do anything for her but watch her die and it was a "terrible" death.

Anyway. I didn't want to be dramatic or try and scare anyone, but after reading over and over the dangers of that drug and then seeing it first hand it kind of hit home especially since I've been taking Vicodin for a year and a half. I have a prescription for only two a day but I know at times I'd take ten a day if I could.

[Neco]

Yeah, it is not a pretty way to go. It's pretty slow from what I hear, taking up to 2 weeks of constant pain before you finally go. I'm guessing they'd give you something for that, but still.

I remember when I didn't even baulk at ten 5/500's. I may miss it too, but I think I sleep a lot easier at night knowing that the worst thing I can ever do to myself on Tramadol is cause another seizure. I remember when every little random pain in the sides and stomach used to freak me out.

[tbc27143]

I have never talked to anyone that was given meds that are just sleeping pills or pain pills for RLS. It has always been an anxiety or depression medications. I was on trazodone until I asked the doctor to try me on Requip. I have had zero problems with it.

I can say that I was taking Hydrocordone for pain following orthscopic knee surgery and found after a few days that it was tha combo that was keeping me awake.

It sounds to me like you need to find another doctor, someone with a little more experience with RLS and is interested in treating it for what it is. There are some that don't believe it is a real disease.

If you look at Requip on WebMD you will find it is used to treat parkinsons disease. What RLS does to us is very darn similiar to parkinsons.

Get another opinion, no matter how long you been going to this doctor.

[Sojourner]

Sure this belongs in another section but is there any advantage to alternating between vicodin/darvocet and tramadol as far as tolerance, addiction, need to increase dosage of each, minimizing intake of acetemetophin, etc. Of course that's assuming each helps.
Not sure I'm stating this right so hope the gist comes across ok.

Also, schools are pretty funny places these days so I'm wondering if it might be a good idea to let your principal or person in charge know that you may be taking medications in the classroom particularly if you are unsure about the side effects etc. Not sure this should be necessary but as I said schools are funny places these days.

[ViewsAskew]

Not sure about that, Mark. Maybe Corrie knows.

[ctravel12]

I have been reading these posts and just wanted to say that I cannot take vicodin as it makes me violently ill. I know as when we went to Colorado last month, I got a sinus/bronchial infection and the dr gave me a prescription for vicodin (this is on a Saturday night) by time Sunday night came, I was so sick I thought I was going to die.

I am extremely allergic to any type of meds with codeine in it. I am thankful that I do not have to take it for my rls.

When reading Randy's post, I have to agree to be very careful. Just my two cents worth as I care about eveyone on this board.,

[ViewsAskew]

Charlene, I had the same exact reaction to Vicodin - two times. The first time, I was in the hospital and was so sick. . .I forgot about that about 6 years later and took it again for the RLS. Within 20 minutes, I was an unhappy, very sick person.

So, I was really scared that opioids were out for me. But, Dr Buchfurer assured me that a problem with one often doesn't mean you can't take others. Of course, for some people it does, but it seems that they are made differently in some essential way, so many of us can take a different one. Fortunately for me, I do fine on other opioids.

[sugbrendas]

I began writting this last nite and was ready to submit when a thunderstorm knocked out the power.LOL

Caution with tylenol too!

If i was a primary,knowing what i know now i would begin everyone officially diagnosed with RLS on Klonopin..I spent years worrying about addiction and years with and without sleep and i'll take sleep anyday!

I think IMHO Klonopin is the single best start drug for RLS.

I've done them all. I told my new primary that i think every resident should spend time on this board,he agreed..

One primary put me on Perc's ,1 every nite but i got off of it after 30 nites cause i can't take that other stuff,it makes me hyper.

Also. i didn't want to build tolerance to the only painpill that works for me!

Brenda

[ctravel12]

If i was a primary,knowing what i know now i would begin everyone officially diagnosed with RLS on Klonopin..I spent years worrying about addiction and years with and without sleep and i'll take sleep anyday!

I've done them all. I told my new primary that i think every resident should spend time on this board,he agreed..


Brenda

Brenda I have to agree with you, but like you said "I am not a dr so the meds may not work for you" I also take clonazapem and so far is working for me