New to group but not RLS

Whether new to RLS/WED or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
Sole
Posts: 212
Joined: Sat Jul 03, 2004 9:25 pm
Location: Oregon

New to group but not RLS

Postby Sole » Sat Jul 03, 2004 9:39 pm

Hi all. I'm knew to rls.org but not to RLS. I've suffered from it for 15 years. I, too, didn't know it was a diagnosable disease until a couple of years ago. I've taken Clonazapam for it for two years and until recently, it worked well. I've built up a tolerance to it so my doctor, who isn't very learned about RLS is having me try Elavil. It doesn't seem to be working at all. I still need to take 2-3 mgs of Clonazapam, every night, to get relief. Does anyone else have experience with Elavil that they'd be willing to share? I'm desperate to find something else that works.

sole

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

Postby jumpyowl » Sun Jul 04, 2004 7:05 pm

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!!! 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.

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)!

Sorry for the long winded post!

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, everything she did was harmful to you! (and to top it off she probably feels virtuous for getting you off klonopin :x )
Jumpy Owl

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

Postby Sole » Sun Jul 04, 2004 7:52 pm

Thank you so much, Jumpy. I've posted a reply on the Pharmaceutical board.

sole

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sardsy75
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Joined: Thu Mar 18, 2004 8:56 am
Location: Queensland, Australia
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Couldn't agree more with Jumpy on this one!!!

Postby sardsy75 » Tue Jul 06, 2004 10:32 am

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 :wink: 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



Corvallis Clinic
Richard A LaFrance MD
444 NW Elks Drive
Corvallis OR 97330
541-754-1274
Neurology

Sleep Disorders & Neurology Clinic, LLC
Dainis Irbe MD
4725 Village Plaza Loop Ste 101
Eugene OR 97401-6677
541-683-3325
Neurology
Sleep Medicine

Sleep Disorders & Neurology Clinic
Robert G. Tearse MD
4725 Village Plaza Loop Ste 101
Eugene OR 97401-6677
541-683-3325
Neurology

Roberts Street Clinic
Steven D. Maness MD
400 NE Roberts Ave
Gresham OR 97030-7464
503-665-9144
Internal Medicine

Center for Traditional Medicine
Noel S. Peterson MD
Suite 204
560 1st St
Lake Oswego OR 97034-3125
503-636-2734
FamilyMedicine

Willamette Valley Neurology
Gordon Banks MD, PhD
2700 SE Stratus Ave Unit 303
McMinnville OR 97128-6257
503-474-2722
Neurology

Corvallis Clinic/Philomath Family Medicine
Bruce Byram MD
1219 Applegate
Philomath OR 97370
541-929-2922
Family Medicine

Pacific NW Sleep/Wake Disorders Clinic
Gerald B. Rich MD
1849 NW Kearney St Ste 202
Portland OR 97209-1453
503-228-4414
Sleep Medicine
Neurology

Oregon Hills Health Science Univ
John G. Nutt MD
3181 SW Sam Jackson Park Rd
Portland OR 97239-3011
503-494-7242
Neurology

Pacific NW Sleep/Wake Disorders Clinic
Gerald B. Rich MD
1849 NW Kearney St Ste 202
Portland OR 97209-1453
503-228-4414
Sleep Medicine
Neurology

Northwest Neurological Specialists PC
Deborah R Syna MD
9155 SW Barnes Rd Ste 531
Portland OR 97225-6632
503-291-1422
Neurology

The Neurological Clinic
Norman K. So MD
1040 NW 22nd Ave Ste 420
Portland OR 97210
503-229-7246
Internal Medicine

East Portland Neurology Clinic, P.C.
Robert W. Crumpacker MD
10000 SE Main St Ste 307
Portland OR 97216-2443
503-256-3034
Neurology

Pulmonary Medicine Associates
John J. Greve MD
501 N Graham St Ste 455
Portland OR 97227-2002
503-288-5201
Sleep Medicine

Pulmonary Medicine Associates
John J. Greve MD
501 N Graham St Ste 455
Portland OR 97227-2002
503-288-5201
Sleep Medicine

PMG/Shady Cove
Evelyn L. Phillips MD
25 Erickson Ave
Shady Cove OR 97539-9758
541-878-3730
Internal Medicine
Nadia

My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

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

Postby Sole » Tue Jul 06, 2004 3:32 pm

Thank you for the support, Nadia. I sure need it right now. I am going to call one of the doctor's on that list who is nearest me and see if he accepts my insurance. I'd write more but I'm just so exhausted right now. You mentioned a reply to my Elavil question but I don't see it. Maybe you just haven't written it yet. Hope this evening find you well.

sole

jumpyowl
Posts: 774
Joined: Sat Mar 27, 2004 2:59 pm
Location: Yantis, TX
Contact:

Here is the letter I promised, Sole!

Postby jumpyowl » Wed Jul 07, 2004 12:04 am

Sole
Salem, OR


Dear Sole: Tuesday, July 06, 2004


I have heard of the severe problems you have encountered with the change in medication for your RLS symptoms, newly prescribed for you by X.Y. FNP at your local clinic. Due to my medical background and also by the virtue of being a fellow RSL/PLMD sufferer, I may be able to offer some helpful advice that you should perhaps take to your health care provider. Make sure she understands that I am not looking to place blame on her or even on the clinic. RLS is a mysterious disorder that puzzles even neurologists.

To avoid misunderstanding, I recite here your prescription and change in medication, please correct me if I am wrong:

She prescribed for you one antidepressants from the tricyclic group

Elavil (amitriptyline) and another, nontricyclic antidepressant

Desyrel (trazodone)

She is also weaning you away from an anti-anxiety sedative, Klonopin (clonazepam) which offered you some relief in the past. Actually, Klonopin was the first drug used for RLS and PLMD. This is due to its previous use in myoclonic seizures. PLMD used to be called nocturnal myoclonus and thus this drug was tried for RLS/PLMD with great success.

Now about the anti-depressants: They are not mentioned among the medications listed as pharmacologic treatment for RLS prepared by an NIH Workshop (see attachment). As a matter of fact, they are (or should be) contraindicated in the treatment of RLS as the following quote shows:

“This class of medications (antidepressants) should be used with caution in RLS patients. Antidepressants can worsen RLS symptoms more often than help them. As depression is a common problem, especially in patients with severe and persistent RLS problems, antidepressants (unfortunately) are often prescribed for RLS patients. RLS patients who are put on antidepressants and notice worsening of their symptoms should inform their physician of this problem immediately. “

[There are no specific guidelines for using antidepressants in RLS, and generally they are used for RLS in the same doses as for depression. The oldest antidepressants, the tricyclics, (such as Elavil) tend to worsen RLS more than they help. There are two antidepressant drugs, Wellbutrin and Remeron which have more dopamine like effects, so may have theoretically have more positive actions on RLS. This however, has not been looked at systematically yet.]

Now let us consider what your health care professional is doing to you: She is weaning you off the medication (clonazepam) that has been working for you, justifiably so, and adding two medications (both antidepressants) THAT ARE KNOWN TO EXACERBATE THE SYMPTOMS OF RLS!!!

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

You mentioned that she does not seem to approve of Klonopin. But Klonopin is not the only thing that would work for you. She could switch to a sedative of shorter half life. Or prescribe a dopamine agonist such as Mirapex which is highly effective of controlling paresthesia in RLS. (see attachment for ideas).

I assume that she is not trying to harm you. However, she should realize when she is out of her depth and look for help. In that spirit this letter was written to offer some helpful information.

An afterthought: The Oath of Hippocrates, written in 400 B.C., which all physicians (and possibly family nurse practitioners) have to take. states in part: “I will follow that system of regimen which, according to my ability and judgment, I consider for the benefit of my patients, and abstain from whatever is deleterious and mischievous.” In other words, "I shall attempt to help my patients and above all do no harm!!

Sincerely,

JumpyOwl



Encl. Pharmacologic Treatment of RLS/NIH Workshop on Restless Leg Syndrome


I hope this will help. Let us know! :)
Jumpy Owl

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

Postby Sole » Wed Jul 07, 2004 5:54 pm

I will defintely let you know and thank you again, SO MUCH, for writing it! Like I said, you guys are really cool. 8)

sole

Elfrieda
Posts: 32
Joined: Fri Aug 27, 2004 8:41 pm
Location: dc

my experience with Elavil

Postby Elfrieda » Thu Sep 02, 2004 4:13 am

Several years ago I was prescribed Elavil and Inderal as a prophylactic for migraines. Not a good experience. I don't know which one caused the problem, but I had terrible short-term memory loss. My fingers turned blue under the nails. I felt lost most of the time. I was in graduate school then, and that is no time for short-term memory problems.

I would never take them again.

How did your situation resolve?

Elfrieda

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

Postby Sole » Thu Sep 02, 2004 4:27 am

I immediately stopped taking the Elavil. And then got angry at my Dr. for acting like she was in the know, when she was not. She eventually prescribed me Mirapex and Restoril which are working well for me.

You seem to be one of those people, like my husband, who suffer all the side effects of drugs, with very little of the benefits. :-(
Sole

"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."

Elfrieda
Posts: 32
Joined: Fri Aug 27, 2004 8:41 pm
Location: dc

drug benefits?

Postby Elfrieda » Thu Sep 02, 2004 12:51 pm

Sole,

My husband, who works in medical information, says nobody would need a PDR with me around. Just give me the drug and see what happens. :D

Elfrieda


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