jumpyowl wrote: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.
Sole, you poor thing!!! Many (((((HUGS)))))) for you!!! Jumpy, you were being Way Too Kind with "Idiot" ... as an Aussie, who can swear like a trooper with the best of them (five years as a midnight shelfpacker at a major grocery store teaches u some interesting things
but i'm such a nice gal at heart....really!), I can think of a few more choice words to describe dear Sole's Doc ... but will leave them up to your imagination!!
jumpyowl wrote: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!!! 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!!!
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.
First things first ... get off the Elavil!! Just because it's been prescribed to you, if it ain't workin and is making things worse, don't keep taking it!! If the Clonazepam has been working and you still have some supplies left, keep on with that.
The only TWO anti-depressants which do NOT seem to have a negative effect on RLS - Wellbutrin (Bupropion) and Remeron (Mirtazapine). I know that there are a number of RLSer's on this site, and on other RLS Support Groups who have used Wellbutrin with some success, but have not heard or seen anyone mention Remeron. I will reply to you about Elavil back in my own thread.
Sorry guys, but "Bugger the Doctor in this case"! Sole, you need to find another one!! Fast!! I know you have read some of my posts so you may have already seen this ... a close friend who recently passed gave me some good advice ... "the more the merrier". I took that advice, and with the assistance of my dear GP Dr K, am now under the care of a much more "with it" Neuro, Dr W. Ask around your friends, find out who their GP's are, and if they're happy with the treatment they've been getting!
I'm thinking that this "Doc" of yours, Sole is more interested in the fees being charged than actually taking the time out and "listening" to the patient - kinda like my first Neuro who, at my last appointment was blatently staring off into space, completely in "another world" while I was trying to tell him what had been going wrong with my treatment, only to have him "return" from whatever planet he was on when i'd finished speaking and launch into a speech about the benefits of Mirapex ... totally non-related to what i'd just been talking to him about.
I'm not sure where you are in Oregon, but have just done a quick search on the healthcare provider database (the link to the list is here, but i've also provided the list at the end of my post here)
http://beta.restlesslegs.org/provider_d ... ctory.html jumpyowl wrote: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.
4/ Explain the situation to your husband and take him with you on your next visit. It may have a surprising effect as a healthy witness to your misery. Make an appointment ASAP, claim emergency (bad side effects of medication or whatever)!
Jumpy is right, antihistamines one of an RLSer's worst enemies. Even though my RLS is secondary, when I had a major headcold a few weeks ago, I was extremely careful about what cold/flu medications I took. I wasn't taking ANY chances!
If you use the same pharmacy all the time, take time out to get to know the pharmacist/s and the staff. If they know what you are trying to deal with, they can often be a literal "mine" of information; particularly when it comes to what drugs you are on and any interactions.
The pharmacist may come in handy if you are unable to get your hands on any prescribed pain meds. Here in Australia there are a number of OTC pain meds available with up to 30mg Codeine in them. I am hoping that these kinds of pain meds would also be available in the U.S. as they may assist with some short term relief.
Jumpyowl (who is very humble at the best of times - luv ya Jumpy
) is one of the best people to know on this site and I highly recommend taking up his offer of assistance!
Again...get a second opinion; and if you have insurance, go for a third. Go down the list below, get on the waiting/cancellation lists. Do whatever it takes. Like I said, the more the merrier!
I have ALWAYS taken my hubby to my Neuro appointments, and often to my GP appointments. He is the "blank space filler" for all the information that you either forget or have just "taken on board" in your fight and don't deem to be useful. He is also your "witness" (for want of a better word!) as to what you are going through.
The two links below are for sites with great information about drugs useful in treating RLS:
http://www.jmjudson.com/Medications.html
http://www.rlshelp.org.rlsrx.htm
I will reply to you regarding Endep/Elavil in my own thread; as having been to see my GP today, or "gatekeeper" as Jumpy would say, also have an update to post as well.
I hope some of that made sense!
Take it one step at a time, one day at a time, and Stay Positive!!!
Take care of you!
Nadia
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