More on Methadone

[SquirmingSusan]

Catsup, I don't know what to tell you about getting the doctors to prescribe opiods. It's a battle. Have you tried bringing in a copy of the Mayo Clinic Algorithm? It's pretty clear in there that opiods are an effective treatment, and doctors shouldn't withhold them if they are clearly needed.

My sleep doctor switched me to Vicodin without a lot of discussion after augmenting on Requip. I also tried Neurontin, but it didn't get rid of the creepy-crawlies. Tried Ultram with the same result. I think if you show them that you'll try the meds that the Mayo Algorithm recommends, and they fail, they really don't have much choice but to give you the opiods.

And if they don't, it's time to look for a new doctor who will. Hopefully you live somewhere there are options for different doctors.

Hang in there with it. You really do need to advocate for yourself, and that gets exhausting all on its own.

Susan

[SquirmingSusan]

I've been having some strange things happen -- don't have anything to blame it on except the Methadone -- maybe someone can help.
I've been on 10 mg. per night for about a month. My tongue has started hurting/burning. At first I thought I ate something too hot, but usually that goes away pretty fast. The other thing I've noticed is that I rarely get hungry and even if I am a little, when I eat, the food doesn't taste good. Sweets, of course, taste good, but I'm diabetic and shouldn't be eating them. Does anyone else find these symptoms with Methadone?

Doety, does the diabetes predispose you to fungal infections like thrush? That's an oral yeast infection that thrives on sugar and causes mouth pain. I've had it when I've been on antibiotics... It's treatable. Might be worth checking into.

Susan

[doety]

Thanks for the advice -- that's exactly what I saw when I looked it up in my handy-dandy AMA home health book. I went to the mirror and looked at my tongue and didn't see anything strange.
But in any event, the tongue soreness has almost gone away and my appetite has returned, so it must have been a passing thing. It lasted for days -- and I'm always convinced that's how it will stay.

[Ridgerunner]

Methadone would definetly sustain relief for a long time. I would say 15 hours and then if I were sitting around the house I would have to take some more for breakthrough. When I work 3-1130pm then it sustains for 24hours. My doctor now switched me to Levorphanol because he has seen too many reports of overdose and death with Methadone. Levorphanol does last almost as long as Methadone. However, I do notice withdrawl symptoms about 18-20 hours after last dose and sometimes due to work I cannot take a dose for 24 hours so I plan to bring it up with him in the future. Methadone is the best in my opinion with Levorphanol a very very close second.

[catsup]

i've had type 1 diabetes for almost 40 years now. and i have had many occasions to take oral narcotics, like methadone. i am not a doctor, but i doubt very much that methadone causes burning mouth symptoms. my somewhat educated guess is that either you are breathing through your mouth a lot, especially at night, or those sweets are indeed causing your mouth to break out with Thrush, as mentioned above. when your blood sugar reaches a certain height it is conducive to yeast growth. i certainly understand the struggle with the attraction to sweets! i just bet that is is the culprit though.

catsup

[ViewsAskew]

Ridgerunner, I was so upset when those report of overdose and deth came out because I knew it would make it harder for us. The only reason is because they are taking huge doses, mixing with other drugs, and trying to get a "high" from it. At our dose? There are NO reports of increased death or overdose.

I am saddened to see that your doctor is following the news without really knowing the facts. I'm glad he is being careful and giving you an alternative, however. I hope it's working well.

[doety]

We just drove two days straight to get to a time-share. No big deal -- unless you have RLS. And this is what I have to report: I did the two days and my legs were fine. We stopped regularly, switched off driving, etc. It's hard for me to believe and maybe it'll never happen again, but right now I almost feel normal!

Once I stopped taking the Mirapex last fall, I haven't had RLS during the day. I'm taking 10 mg of Methadone at night, and I still get up a couple of times with restless legs, but then I go back to sleep. I feel like it's some kind of miracle.

The thing about the sore mouth was obviously a passing problem; but when something like that happens, I always suspect the drugs. I, too, am sorry about the craziness going on with Methadone. People already look at me like I'm crazy -- and say things like: Do you have to go to a clinic to get it? And I really don't tell many people! This was from a cousin who has RLS, because she inherited it from the same person I did and I thought she'd want to know.

I don't know how to explain my car trip -- because I did a plane trip a month ago and it was horrible. I'm afraid the psychological part kicks in when they shut the door and I'm lost. In a car, I know I can stop or get out.

We had spent so much time and money trying to get just the right RV a few years ago, so I could stay in the back and stand up and move around. Like many of you, I live my life around this disorder. But this gives me more freedom and we may get another RV in the future and not have to worry about me and my legs. Bon voyage!

[Neco]

Actually I would be interested to know if you have to go to a clinic to get it, or if pharmacies actually carry it.

As for your car trip, yeah.. When I drove out to and back from Maryland last summer, I didn't really have issues except on the trip there and only when I wasn't behind the wheel. The trip back I slept about 4 hours (left at 10pm and stopped around 3/4am to eat and sleep) and ended up taking a 25 hour drive because of car trouble; it should have been a 15 hour drive tops... LOL

I think it's something to do with being behind the wheel, and also I was preoccupied with trying to keep my car from overheating, heh..

[ViewsAskew]

Pharmacies carry it. . .in some States. In Michigan, I think, you can only get it at clinics. Not sure what Wisconsin's law is. But, in Chicago, I just go to Walgreens. I do hvae to show a photo ID everytime and I have only a day or two to get it filled. Not a problem because a doctor can only write one month's script at a time. I think he could write two months worth, but insurance will not cover a drug like this for more than 30 days. So, my insurance pays my doctor $50 each month for me to say hi and him to chat with me for a few minutes and his nurse to write the script.

I sort of understand why they have some of these laws, but jeez - I am taking a tenth of the dose an addict would take, no one could possibly get high on it, I couldn't even begin to get enough to sell. . .why is it so hard? Couldn't this be easier based on what you use it for? Well, maybe it would be too hard and other people could fake it, but. . .

[Neco]

It doesn't even have a lot of recreational merrit from what I understand anyway. Yeah it doesn't make a lot of sense, so who knows.. Good old American bureaucracy

[wigglypain]

As usual my butt is hanging low and my depression is about as low as it can ever go. So, I come back to the family who know me best. I have been on Methadone twice and each time the sedation is to profound for me. I start at 8-10 mg the increase weekkly up to as much as 60 mg. Continue to the breakthrough pain(which no doctors will give me rx for), and I am running out of Dr.'s here on Low Country of SC/
I even traveled to Atalnta, GA for treatment at at pain center, had spina; cord stimulator implant trial done with good results. That doctor took sudden long-term leave of abscence and the one who took my case over accused me of "the usual seeker" it was taking me 45mg of oxycodone 4 time daily/nightly for RLS from 10 to a 5. Yet this bi*ch had audacicty to even tell me she has never heard of RLS with pain that Tramadol cannot handle. I do not go there anymore.
Right now my old doc has me back on MS contin30 mg three times a day. The pain in my arms, legs and ankles, but he still refuses to write me anything for breakthrough. I cannot take very much longer. I am in line for posssible spinal cord stimulator implantation again. I really am at my finest frayest thinnest string at the moment. My pain has taken to levels of darkeness that few of us undersatnd. I am not afraid of death.

I actually met with Bill Ondo during the RLS meeting and his word to me were "Good luck." However I think he may be another step for me if all fail here in Charleston.
Wigglypain at the Worst

[ViewsAskew]

Oh, Ed. . .my first thoughts were, "Gosh, I wish a doctor would read this and see how badly we can suffer from this," but I immediately realized that it would be horrible for them to read it. They'd think that you needed a psych eval when all you need is real, honest pain management. What the war on drugs has done to doctors treating us fairly and with compassion is beyond my words.

I hope that if you can see Ondo that he lives up to my perception of him. He doesn't seem afraid of treating RLS agressively or of thinking outside of the box. He may be your best bet.

Welcome home.

[Sojourner]

Ed K, I am so sorry to hear of all that you have gone through and are still going through. I hope you will be able to find someone to listen to you and/or that Bill can be helpful to you at some point in the future. Each time I read a post similar to your's, it is hard for me to believe that we really are living in the 21st century. I'm surprised a big city hospital would be as backwards. I'm wondering...is rls treatment better or more forward thinking in some regions of the country than others i.e. South vs North or are there just dumbs...ts spread out evenly across the United States.

Is Mayo Clinic and option?

Will put you on the prayer list this night and hope you find some peace soon.

[becat]

HI Ed, everyone,
I just wanted you to know that Dr. Ondo is in Houston now.

I'm not shocked his words were Good Luck.....Nothing more to add there...

Ed your home now and you know the first thing I'd tell you.......is train a doctor yourself if you have no choices left.
Arm yourself with the RLS Algorithum and get them educated with you.
Print off as much as you can and stand your ground.
Doctors have an oath to take before they get to be docs, wish they would remember it more often.

Glad your here Ed,
Lynne

[wigglypain]

Yes, I have considered Mayo clinic or John Hopkins even. My partner has family in Maryland and he would love to see them, I think John Hopkins is in Baltimore, MD.

Thank you all, hard to type when tears are in the way .

I need info on Iron infusion, that was the other thing Ondo told me about at the roundtable session in San Antonio. Anyone have access to the algorythm for that. I may have to call Ondo's office and have them fax it to my rheumatololgist, who treats my RLS. He does all those Rheumatoid infusions why can't I join the crowd.

After a visit top the ER last night, what a joke as you all know, I got10mg oxcodone then to take and sent my happy little way. Doc did increase MS Contin to 45 mg three times daily this morning after hearing of my O-dark-30 ER visit.

I am planning ahead with the full stimulator implant. the trial actually worked. Just no coverage for my arms, since no lead was placed higher than thoracic spine for the trial. But the muther gave me relief and was fun to play with at that.

I not here here often and my love goes out to my SPECIAL FAMILY for all the replies. Help me link to algprythms from Mayo. Lastime I could not access them as a non-member