Seeking advice on meds

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
Sole
Posts: 212
Joined: Sat Jul 03, 2004 9:25 pm
Location: Oregon

Seeking advice on meds

Postby Sole » Sun Jul 04, 2004 3:21 am

I've suffered from RLS for fifteen years but have only been medically treated for about three. I am seeing a new Dr. who doesn't seem very learned about RLS as she has recently prescribed Elavil. It hasn't helped at all and from what I've been reading, actually exhaserbated the symptoms in many patients. I've been taking Klonopin, up until recently but she's on a big kick about addiction. True, I have built up a tolerance but there's a difference between being dependant on something and being addicted. She was insistant and so I agreed to try this new drug regiment which includes. 50mg of Trazodone, 25mgs of Elavil and 1mg of Klonopin(decreasing the dose, every couple of days.) It's not working!!! The only thing that works and that's after 2am is, at least, 2.5mgs of Klonopin and a laborous "Big O." I know that's a bit too much info but I'm hoping someone can take a look at this regiment and give me some ammunition to take to my doctor next week. I wish it was as easy as switching Dr.s but I'm on state insurance and they only let you switch primary car physicians once every six months. Thanks in advance for the help. I'm so glad to have finally found this group!! :-)

sole

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jan3213
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Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

Seeking advice on meds

Postby jan3213 » Sun Jul 04, 2004 5:12 am

Hi Sole

First of all, I'm not a doctor, nor an expert on medication, but I also have had RLS for about 20 years and go to an outstanding neorologist at Barnes Hospital in St. Louis, Mo. I take 1 mg. of Mirapex 2 x daily and 2 mg. of Klonopin 2 x daily. This regimen of medication helps me right now. Every few years it has to be adjusted. Here's the part I want to emphasize. My doctor said that some of the medication given to RLS patients can become addictive eventually, but since there is no cure for RLS at the moment, and we know how horrible it is, WHO CARES!!!!! His words, not mine. I don't know how anyone else "out there" feels, but I want to sleep and function as normally as possible, not walk the floors all night and exist on 2 hours sleep (which I have done many, many nights). So, I guess people have to decide what to do themselves. I would suggest finding a good doctor who really understands what you are going through and who is completely sympathetic. (I just re-read that you are on state insurance and can't do that--too bad. Maybe you can find some articles or do some research that will help you on your next visit. Maybe this site has some info.) Not every doctor is understanding--some don't even really know what RLS is. By the way, I have the kind of RLS that is painful and sometimes, I dread going to bed at night. I'm sure you know what I mean. Hang in there. I just became a member and I already have learned so much and have made new friends. This is a great site and a great place to vent to people who really understand!!!

Jan

jumpyowl
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Joined: Sat Mar 27, 2004 2:59 pm
Location: Yantis, TX
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To Sole and Jan

Postby jumpyowl » Sun Jul 04, 2004 2:06 pm

I was going to comment on Sole' problem but I have something to say to Jan as well.

First on addiction: Jan wrote:

My doctor said that some of the medication given to RLS patients can become addictive eventually, but since there is no cure for RLS at the moment, and we know how horrible it is, WHO CARES!!!!!


Totally agree. I would even go further and say that addiction is not a great problem for people who depend on the particular drug for relief. The patient may get used to it requiring some dose increase but that is not addiction! When doctors talk about addiction they rarely speak of it based on true knowledge. They usually parrot the party line.

Now to Sole, who really needs some support. Pardon my French but your doctor is an idiot. (and I rarely say or write that). Either that or she is a sadist which I doubt (but I met those also during my seven decades). Her ignorance is astonishing and all her pharmaceutical knowledge is coming straight from high pressure sales reps from companies making antidepressants.

Let us consider what she has been doing. She is weaning you off the medication (clonazepam) that has been working for you and adding two medications (both antidepressants) THAT ARE KNOWN TO EXACERBATE THE SYMPTOMS OF RLS!!! :roll: :shock: Namely Trazodone (desyrel) which is infamous to cause priapism (I assume you are not a male) and Elavil (amitriptyline HCl) which is also an antidepressant but with a broader field of efficacy - even used for MS, and in Sardy's case, for chronic fatigue syndrome).

So in simple words, she is taking away a proven medication that helps and giving you two medications guaranteed to make your RLS worse. So everything she is doing is making your RLS worse!!! :shock: :shock: :shock:

What she could do is to read up on RLS (there is an excellent Medical Bulletin on this website). But she will probably not do it. But Klonopin is not the only thing that would work for you. I would switch to a tranquilizer of shorter half life (the trouble with Klonopin (clonazepam) is that it stays in your system for 36 hours so you could feel druggy next morning. Lorazepam (Ativan) is one. I was on it (only for sleep) for 15 years and had no problem weaning off of it within a few days.

Also there are medications that will help. Pain medication of the opioid family such as Hydrocodone will help. But with her attitude she will probably not prescribe that for you either. Mirapex at low doses (a dopamine agonist) will almost certainly help but you probably also need something to help you to sleep. If not a painkiller than a tranquilizer.

BTW do not use over-the counter sleep medication such as Tylenol PM as the antihistamine also exacerbates RLS.

I am suggesting three possible solutions:

1/ If you want me to, (and if you think it would do any good) I could write her a letter (with references to support my points) that you could take with you on your next visit. Before 1990 I was a Professor of Medicine (in a different field - but that does not matter as there is no such field as RLS) with an international reputation. I am also a fellow RLS sufferer who knows from first hand experience what he is talking about.

2/ The reason I am offering this is because 6 months is way too long to be on the wrong medication. If you do not like my offer, I would get a second opinion, no matter what the cost - but it is only one visit) and take that back to her. Make sure you get somebody who understands RLS.

3/ You could also demand a sleep study. This will confirm your problem and the doctor in charge will most likely prescribe the right medication.

Sorry for the long winded post! :oops:

An afterthought: Hippocrates Oath, which all physicians have to take states in part: "I shall do no harm!! (to my patients) If you think about your new health care taker, all she did to you was harmful! (And she probably feels virtuous for getting you off klonopin. :roll: )
Jumpy Owl

Sole
Posts: 212
Joined: Sat Jul 03, 2004 9:25 pm
Location: Oregon

Postby Sole » Sun Jul 04, 2004 7:31 pm

Thank you so much for your thoughtful replies. I would be so grateful if you would be willing to arm me with something to take to my doctor. You and Jan are absolutely right. Addiction should be the least of my doctor's concerns. And you're right, also, she is quite self-righteous and, I agree, I am sure she is feeling like she's doing me a huge favor by getting me off Klonopin.

I do plan on printing out a bunch of info from the site to send her ahead of time. If there's particular information you think I should print out, feel free to let me know.

I"ve been reading rls.org for a long time but, and I don't know why, I never noticed this group. So when I've had past visits, I've made her aware that I do my research and am not an idiot when it comes to RLS. Again, thank you for your offer. I can't tell you how what relief I feel to find a group of people who KNOW I'm not just a depressed drug seeking idiot!

Sole

jumpyowl
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Joined: Sat Mar 27, 2004 2:59 pm
Location: Yantis, TX
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When?

Postby jumpyowl » Sun Jul 04, 2004 8:30 pm

When is your next appointment? I want to make sure you get the letter in time.

It is an idea to print out a bunch of stuff. It will not hurt but it will probably not help by itself. [I summarized some of my findings and asked my gate keeper whether he would want me to leave it. He said that he has plenty of reading to do he never gets to..waving toward his office, and did not take my folder (after admitting that he does not know much about RLS).]

The Medical Bulletin comes to mind. It is on this web site. Unfortunately, it is 30 pages, but i would highlight the things relevant to your cae by a yellow marker. You may not need anything else.

Somewhere else I mentioned the idea of taking your husband with you. It often works.
Jumpy Owl

Sole
Posts: 212
Joined: Sat Jul 03, 2004 9:25 pm
Location: Oregon

Postby Sole » Sun Jul 04, 2004 9:06 pm

I don't have the appt. set yet. I will be calling on Tuesday. I am very insistant so I will probably get in by weeks end. Yes, you did mention taking my husband and yes I certainly will be.

I have patience for a lot of things but I don NOT have patience for people who treat me like I'm stupid. I will arm myself with your letter, some highlighted literature from this site (as you suggested) and my experiences from this last regiment of drugs she prescribed. If she's not willing to stop, look and listen, I will cut her to shreds (verbally of course). Hate to do it but I'm the one suffering from sleep deprivation. Not her. Perhaps my "fit" will be evidence that perhaps I do need some rest and relief. If not, I will fire her. Call my state insurance and demand I be allowed a new primary care physician and file a formal complaint, if necessary. I have enough Klonopin to last me two months worth of a battle. Hope it doesn't come to that though.

sole

helpmee

what do i take ?

Postby helpmee » Tue Jul 06, 2004 12:50 am

i recently applied for one of the special study groups in my area. i was told i was a perfect canditate for the study except for my work schedule. the interviewer then told me that they were testing a drug that was also used for treatment of parkensens disease. i wrote the name of the drug down and since then managed to misplace it . i am going to see my doctor soon and i want to know if anyone knows the name of this drug so i can bring it up to my md.. thanks to anyone who can help

jumpyowl
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Joined: Sat Mar 27, 2004 2:59 pm
Location: Yantis, TX
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Just a guess!

Postby jumpyowl » Tue Jul 06, 2004 2:21 am

It is probably Requip (or ropinirole HCl). Please let me know if I am wrong.
Jumpy Owl


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