Narcotics and rls

[ViewsAskew]

You may be able to take that article to your doctor, along with Dr B's email and ask that he call Dr B (he is great about talking to other doctors) to make him comfortable with it. When I recently found a good doctor here, she was pretty good, but scared of the opioids. I'd been using them for awhile. He talked to her and she was very comfortable after that. About 7 years ago, when I was in a similar place to where you are, Dr B wrote me a similar letter. I took it to a GP I had seen in the past and who I thought might help. He was 60 miles away from me, but I figured it was worth it. It was. He accepted Dr B's email and the articles I brought and agreed to use methadone to get me off of the Mirapex. I'd tried three times to stop and I couldn't. I didn't get any sleep - as you are finding out - and after 5 to 7 days, I'd cave in and go back to the drug. With the methadone, I didn't have any issues (well, except the other issue of getting off the Klonopin, but no RLS/WED issues).

That period when you stop the dopamine agonist after augmenting is HORRID! I only know a few people who've managed to get through it on their own without retaking the DA or using an opioid.

[Sandya4746]

Called neurologist but could not get in until next week. Called my primary care physician who did see me. Put me on 5-10mg per day of Hydrocodone just until I see the neurologist and then lectured me on using this and warned me about addiction to it. I felt bad for accepting it but I know this means I will sleep tonight and that is bottom line. I hate feeling that the doctor thinks is so horrible. I do understand though unless you have experienced RLS and augmentation you would have no clue. Looking forward to sleeping tonight. Thanks for all of your support these past few days. It is nice to know I am not alone with this but also do sorry this means that many of us have this.

[majoraward]

I felt bad for accepting it but I know this means I will sleep tonight and that is bottom line. I hate feeling that the doctor thinks is so horrible.

Don't beat yourself up because the doctor is ignorant. You have nothing to feel bad about except that you are suffering from a terrible disease. I like the fact that you didn't stop looking for help but went on to another doctor when the first couldn't see you in time, you are being proactive which is a good thing

[ViewsAskew]

Agreed with majoraward - you have nothing at all to feel bad about. The doctor is concerned, but the data is overwhelmingly on our side. A study, a few years ago, looked records of RLS/WED patients who'd been taking opioids for a long time (can't remember - could have been up to 15 years, but not sure).

The result was that very few people they reviewed had ANY problems. They didn't have tolerance, they didn't get addicted. They didn't drug seek. One of the keys is to take just enough to cover symptoms and no more. Taking extra can cause problems.

If you were a diabetic, you'd not feel bad for asking for insulin. If you had a terrible anxiety disorder, you'd not feel bad wanting something to help you be more calm. It's not different for us. Opioids are quite effective for many of us and they shouldn't be withheld if the work and other things are either not available or do not work. Right now, this is the ONLY class of drugs that will help you. And you need sleep.

I hope you slept tonight.

[Sandya4746]

Slept 8 hours last night. I have not slept 8 straight hours in 7 years I have had RLS. I felt normal for a change and felt rested, productive and awake all day. I think I am going to try Horizant though. I have read about it and think it might be a good option for me. My GP told me if the neurologist wouldn't prescribe it, he will. Which is good. On the other hand he told me he didn't think I was reacting to the requip (although I already had experienced augmentation in the past after taking it successfully for awhile) but was showing signs of opiod withdrawal. I reminded him that I had not been on opiods at all for 4 weeks and had none of the problems or symptoms that I had until the night I started back on the requip. I don't think you can have delayed withdrawal symptoms that don't start until 4 weeks after stopping use but what do I know. Anyone ever here of this? I also don't think it was a coincidence that the day I started back on Requip, delayed opiod withdrawal symptoms occurred. Boy, do I need to find a new doctor.

[ViewsAskew]

I'm not a doctor, but I'd bet there is not such thing as withdrawal starting 4 weeks later. It doesn't make sense - the half life of the drugs isn't 15 to 20 days - which it would have to be for that to be true. It's probably just a few hours (most opioids are relatively short acting - not all, but most). You feel it very soon after stopping them. Besides, Dr B agreed that it's likely augmentation.

He might be educable....but how much do you want to have to do?

And, great news on sleeping 8 hours!

[jul2873]

I have been dealing with RLS for years without taking medication, but it has gotten worse in the last couple of years and I find I really need something every so often (when I fly, long car rides etc.). If you go to Amazon.com and scroll down to the very bottom of the page, you'll see a link to the amazon in England (United Kingdom). If you click on that and search for "codeine" you get a good many possibilities that come up.

I have ordered other things from Amazon UK (like a CD that wasn't out here) but haven't yet ordered Codeine. Has anyone else? Just wondering . .. .

[Sandya4746]

Thanks for your suggestion but I think I will try the Horizant and hope for good result. I have been reading on it and Dr. B thinks it would be a good option for me. I have confidence that with persistence I will find adequate relief and educate myself and maybe my Doctor at the same time. This discussion board is amazing though. So many wonderful and caring people. Sure hope I can be as big of a support to you all as you have been for me. Merry Christmas all.

[ViewsAskew]

Huh - I imagine they wouldn't send it here, but I don't know. I've not tried it.

[majoraward]

If you click on that and search for "codeine" you get a good many possibilities that come up.

Not sure where you live but if it is not legal to purchase it in the United States and you buy it through the mail and they send it to you it is illegal as in the feds may be there when they deliver the package

Federal Trafficking Penalties
Any Amount Of Other Schedule III Drugs: Including: "Products containing less than 90 milligrams of codeine per dosage unit (Tylenol with codeine)"

Penalty: First Offense: Not more than 10 yrs. If death or serious bodily injury, not more that 15 yrs. Fine not more than $500,000 if an individual, $2.5 million if not an individual.

This is from the United States DEA (Drug Enforcement Agency) web site. Just so you know
http://www.justice.gov/dea/index.shtml

[Sandya4746]

Went to Dr. today. My Ferritin level is very very low. Neurologist doesn't want to manage this but did prescribe Horizant. Now to get insurance to cover this. He was very interested in Dr. B's article and kept this to read. Hopefully my GP will manage the iron. He was unaware of the newest research and I find his interest on learning more exciting for the WED sufferers in my community. I encourage everyone to hang in there. It takes awhile sometimes to get a Dr. To work with you but the more we educate them the better we all are!

[ViewsAskew]

[Polar Bear]

[majoraward]

Went to Dr. today. My Ferritin level is very very low. Neurologist doesn't want to manage this but did prescribe Horizant. Now to get insurance to cover this. He was very interested in Dr. B's article and kept this to read. Hopefully my GP will manage the iron. He was unaware of the newest research and I find his interest on learning more exciting for the WED sufferers in my community. I encourage everyone to hang in there. It takes awhile sometimes to get a Dr. To work with you but the more we educate them the better we all are!

I finally told my doctor that I didn't care what the iron infusion cost, if the insurance wouldn't pay it, I would. I got the iron infusion last month and now I am waiting for the bill, still don't know how much it is but it could be a couple of thousand dollars (gulp)...but sometimes people get stuck into thinking that just because insurance won't pay for it that they can't have it - but you can have it if you are willing to pay (payments lol) and it could be a life changer (or not), it is a gamble.

[1mainpain]

I have flu like pain every night if I don't take opiods I only have a ferritin level of 7.5