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Old 06-15-2005, 12:42 PM   #1
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Desperate In Fort Myers

I have suffered from RLS all my life, so I will spare everyone the familiarly agonizing details as they are no different than anyone else's. When I was finally diagnosed via sleep test (my doctor's preference) he claimed that I had one of the highest RLS/PLMD cases he had ever heard of, and personally the highest he had ever treated. 90 PLMD's per hour. The first step was the parkinson's meds. Mirapex, Requip, permax, pergolide, synamet, etc etc. I had the same problem with all of these drugs and that was extreme side effects that made me feel drunk, included instant, immediate and long lasting migraine headaches, and tunnel vision impairing my ability to drive. The next course was to move me to sedatives first then hypnotic sedatives next. This round of drugs included xanax, klonopin and the likes. These medications, while they helped me personaly sleep (only if doubled in dose) they actually made my RLS worse. I woke up every day to find my wife on the couch, and after a few weeks noticed bruises on her legs from my kicking in the night. The sedatives made my kicking worse because I was pretty much doped to the point of coma and would not be aware that I was kicking her. Finally, when at one point she could not awake me and an ambulance had to be called, the doctor took me off these medications. Finally, his 3rd line of defense was, as it usually is, narcotic pain medication. I was hesitant to take these medications because of how habit forming they are, but when he started me on one vicodin per night at bedtime, this medication did wonders - for a month. Then it was 1 before bed, and 1 at 4:00 am to finish sleeping the night out. Needless to say, my body kept requiring more and more of this medication and I begged my doctor to take me off of it. He refused and said it was working. I switched to another doctor who specialized in sleep disorders and he took me off the vicodin and put me on Tussionex cough syrup. It is a much slower acting form of hydrocone than a pill with a 4 hour half life. Tussionex had a 12 hour half life, but in the end, it was still hydrocodone and wore off very quickly.

After researching RLS heavily on the web, I discovered that methadone is sometimes used in extreme cases such as mine. I was offered methadone by my first doctor when he first discussed narcotics but I refused because of the negative impression the word methadone gives people. Since I was offered it first I decided to try it. I went to a methadone clinic, and after being on hydrocodone for almost 3 years total, it was not difficult to fail a drug test. Methadone was the answer to all my problems and I never needed to take more. for the first time in over 5 years of trying different drugs, I was again sleeping a full 8 hours every night. This lasted for 3 months at a methadone clinic until the doctor requested an appointment and basically told me that I was not an addict and that I didn't belong there. He told me I was a person who did not need methadone to get off of another drug, but needed it for a continuing medical disorder and that I needed to seek treatment elsewhere as his time had to be devoted to actual people working on getting off heroine and the such. He referred me to a doctor, called the doctor personally and told him my situation and this doctor agreed to take me on. For the next year my new doctor kept me on the methadone, and instead of increasing the dose over time, I actually decreased it to the lowest minimum I can take without having my horrible RLS symptons start in again. I take only 30mg first thing in the morning. Then it's off my mind, and I sleep a full night.

My wife was transferred to Florida with her job and we now live in Fort Myers. I have to travel back to Ohio every 4 weeks to get a new prescription from my doctor because there isn't a single doctor here in the fort myers area, that I can find, who will at least even call my doctor and talk to him about my situation. I have gone to dozens, paid the co-pay only to have them walk in, see the word Methadone, on my paperwork and tell me: "I'm sorry, I won't prescribe methadone." I have looked into the local methadone clinic here, but unfortunately, I don't qualify there either. I do not abuse, nor misuse this medication. I take it exactly as prescribed by my doctor and have for well over a year now, but I'm having such a financial burden trying to fly or drive back to Ohio every 4 weeks to get my new prescription.

Are there any doctors out there who either live in the Fort Myers Florida area, or know of doctors in there, who would be willing to take me on as a patient and at least call my doctor in Ohio to discuss my case instead of just saying NO simply because they do not want to be involved with this medication? My doctor in Ohio, of course, can not keep prescribing me forever since I don't live there anymore, and I can't afford to keep going back to Ohio either, but for anyone with nightly RLS and the madness that comes with it, I'm sure you can all understand why the thought of having the one and only medication that works for me discontinued is a very scary thought.

If anyone has any suggestions or could refer any doctors who will at least listen to me, I would be eternally grateful.

thanks
Mascutt2000

 
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Old 06-16-2005, 03:48 PM   #2
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Re: Desperate In Fort Myers

Oh my God! I read your story and the drug problems that you are experiencing. Must be awful! Have you tried taking magnesium? no or you wouldn't be asking about More drugs I guess. You sound like you have an extreme case of RLS that's for sure. You should go to your local Health Food Store and ask for Magnesium and maybe take at least 1000 mg.s a day.
Good luck.
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Old 06-16-2005, 07:06 PM   #3
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Re: Desperate In Fort Myers

Thank you for the suggestions, however, I did the magnesium in the beginning, and I also did anything and everything I could find in the health food stores that was related to relaxation and sleep. I'm not on a search for more drugs, I'm on the search for a doctor who will simply continue the same therapy that has proven now to work going on 2 years. I don't want more, I just want the same amount, and a doctor I can trust; who will work with me in regards to this, so that I can stop making this cross-country trek from Florida to Ohio every 4 weeks to get my regular prescription. Trust me when I say that I have taken just about everything under the sun for my RLS, and over a period of 5 years in which I was tantamount to a guinea pig for my doctor, this methadone is the only thing that has consistently worked for me; with very minimal side effects. At this point I only want to be reassured of my continued sleep every night. You are right, my case of RLS is extremely severe. When I was sleep tested in 2001, my PLMD's were among the highest in the country from my age group of only 36 (at that time). they recorded 4 hours of sleep during which I kicked and jerked 397 times with 394 of those times disrupting my sleep patterns. And this sleep they could only record by giving me a few ambien. The tech woke me up at one time during the test. I asked him how long I'd been alseep and he said 20 minutes. I asked him why he woke me up then and he said it was because I had already pulled every single one of the electrodes off. He laughed and said: "Tell me another human being does not try to sleep in the same bed with you." I assured him that that's why I was there. He likened what he saw in my sleep patter to demonic possession. Most people with RLS can relate to that as it sometimes feels as if your body has been taken over by the sensations and creepy crawlies and sometimes all we can do is thrash around.

 
Old 06-16-2005, 09:19 PM   #4
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Re: Desperate In Fort Myers

I sure hope you can keep a dr. How much magnesium were you taking? Did you try lots of it?
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Old 06-16-2005, 09:45 PM   #5
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Re: Desperate In Fort Myers

I don't remember exactly, it was quite alot, it was liquid and it was the very first thing my old doctor tried before referring me to a specialist. In addition to magnesium he also told me I had an iron deficiency and we went there, then he told me I needed muscle relaxers and he put me on those, which had nothing to do with my restless legs, then he told me my metabolism was too high and he prescribed buspar, which, of course, sent my RLS through the roof. He finally gave up and sent me to a sleep specialist who immediately took me off the buspar citing that it intensified RLS symptoms. Well, I didn't need him to tell me that! LOL. So this was several months of various supplements and drugs from my GP at the time; even before sending me to specialist, then I went down the RLS yellow brick road with him beginning with the permax and other L-dopa drugs until we finally ended up at the hydrocodone. When he wouldn't take me off that's when I switched to another sleep specialist. That sleep specialist put me on Tussionex cough syrup, which is actually just a stronger and longer lasting dose of hydrocodone. I stayed with him only one month and then started doing alot of research on methadone and RLS before deciding to give it a try. I went into it very skeptically, expecting the exact same results as the hydrocodone gave me. The first night I slept like a baby, but I waited, knowing full well, that like the hydrocodone, my body would become immune to it and I would need more. That was almost 2 years ago, and to this day I have reduced my daily dose instead of increasing it. This RLS just got really out of hand for me around age 30, and until I was 38 and finally tried the methadone for it, Nothing worked. So at this point, I wouldn't accept money to go back and start experimenting with other cures and put myself back in that same predicament of never sleeping (15 days straight with no sleep during my worst RLS times). It took a long time, but I found what works for me. I wouldn't advise it for everyone, I mean it is a narcotic drug and if and when I do stop taking it, I know I will be sick, but for me, and with the severity of my RLS, it's what works and gave me back my life. Now I just want to find a doctor here in Florida that's at least willing to talk to me and my doctor in Ohio. But they look at my sheet, see the word Methadone and it's like I told them I had leprosy or something...they get quite ancy...start looking for who they can refer me to, and they want out of the room immediately. (another reason I wouldn't recommend methadone to everyone for this...it is a drug with a stigma attached to it as well), but even that's worth the sleep I get at night

 
Old 06-16-2005, 09:57 PM   #6
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Re: Desperate In Fort Myers

Wholly man! I'm so sorry you had to go through all that! Maybe you should try taking mag. again but taking 1000 mg a day. It won't hurt you, it's a mineral. I wish these dr.s would take RLS more seriously! How dare he look at you like that. You should have said to him 'I'd like to see what YOU would be desperate enough to try after not sleeping for 15 days!' My God. I hope you find a dr. who really cares soon.
Michele
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Old 06-16-2005, 10:10 PM   #7
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Re: Desperate In Fort Myers

LOL! I have said that to people before, mostly family who say things like, "I would have never started taking methadone in the first place" I remind them that they sleep every night, and I'd gladly give up all of the medications I've taken designd to help me sleep so long as I can get them to sit up with me every single night and still expect them to go to work the next day, and then be at my place again the next night for a repeat of the same thing! LOL. That normally shuts them up! hehehe

I appreciate the suggestions, but as I said, the Methadone works for me, and can have up to a 45 day withdrawl period, the only way I would know now if taking more mag would work this time, would be to stop taking that, and I would be so sick that nothing else would matter anyway, if that makes any sense???

 
Old 06-16-2005, 10:44 PM   #8
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Re: Desperate In Fort Myers

OMG you poor thing. It's the worst when no one takes you seriously! Have you thought about ordering it off the internet?
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Old 06-17-2005, 04:37 AM   #9
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Re: Desperate In Fort Myers

I have done only a bit of research about ordering it off the internet, and I don't want to go that route. Understand that methadone is a highly narcotic medication and I will be the first to admit that I can not stop taking it without being very sick, but it's no different than all the other meds I tried that didn't work, I was still sick all the time because I was sleep deprived. But because of the nature of this particular medication, I do not want a free reign's ability to procure it. I want a doctor who, like mine, will sign a contract with me in regards to prescribing this medication. A doctor who I will be able to speak to in regards to every decision with this medication. My doctor in Ohio probably regrets offering to do this for me because of the fact that I talk to him constantly. For example, when I was first put on it, I wouldn't so much as take aspirin or ibuprofin without asking first to see if it was ok to take. I also went to a lab and set up a weekly (then), only monthly now, drug screen in which the results are sent to my doctor's office just for his own piece of mind. Then he knows I am not taking anything else at all, and he can monitor my methadone levels too and see that I am not taking it all really fast and then being sick by the end of the month or anything like that. It's a complete trust issue between myself and my doctor and that's what I want to find here. I just don't want to get a medication off the internet where I do not have to answer to anyone for it. In addition to that, the internet drug sites and closed down all the time with no referrals. If I go that route, for example, and then the site closes down, I'm screwed. As it is now, if my doctor ever decides to stop treating me, he has to give me 4 weeks notice to make other arrangements. I didn't just sign a contract with him, but he also signed one with me. I work over time to make sure that this medication becomes neither my identity, nor a thing to be abused, and I pretty much trust myself not to lose control of it, but why take a chance. I would rather both trust myself not to lose control, and have a doctor who also trusts me working together. I feel much safer taking this medication this way, and I know then that if my doctor does ever want to change my medication, that he would do it slowly and never just say, "Now this time I'm going to have you take something else.." leaving me to deal with the sickness of stopping this med abruptly on my own. Strength in numbers! heheheh

 
Old 05-30-2008, 12:34 PM   #10
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Re: Desperate In Fort Myers

Have you tried going to a pain clinic for the methadone? Also, I use methadone for my HIV related neuropathy, so an HIV clinic or possibly a diabetic clinic might refer you to a doc that could help.
Good luck

 
Old 06-04-2008, 03:48 AM   #11
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Re: Desperate In Fort Myers

I have read thru your post and my case is about the same gone thru all drugs with some success only to have them fail. I am now taking Vicodin and you know what that does so I have sympathy for you and you need to find a Dr. that will give you what you need. Once my Doctor said to me that he wanted me to stop the Vicodin I said ok but will you come home with me and sit up all night ready to go out of mind or better yet I will call you on the phone when it starts and we can talk until in goes away maybe for a few days straight. Well guess what he gave me the prescription and has never said a word. I have looked into a few things that may hold some promise one is Botox there have been some studies and they have met with some success. I just received the protocol from the test and my Doctor said he would give it to me. Second I have been trying an electric muscle stimulator I am in the early stages of this but there does seem to be some improvement with it like I say I just started so it will take a little to figure it out. All the best to all of you no one knows how awful this is and how it has wrecked our lives………….

 
Old 06-05-2008, 07:51 AM   #12
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Re: Desperate In Fort Myers

denof,

Are taking any meds for a different condition? Sometimes rls/plms is a side effect of other medications.

Bethsheba

Last edited by bethsheba; 06-05-2008 at 07:51 AM.

 
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