random rant about a doctor

For everything and anything else not covered in the other RLS/WED sections.
barbeegee
Posts: 32
Joined: Thu Apr 26, 2018 1:29 am

Re: random rant about a doctor

Postby barbeegee » Fri May 04, 2018 7:51 pm

My doctor for 25 yrs gave me the lowest dose of Xanax .25.... I break them in half. One half at bedtime gave me a great night's sleep. So for 17 years that's how I dealt with RLS. The doc retired and I had to find a new one. The new one immediately took me off the Xanax saying that people over 65 have a tendency to falls and Rust Smith said that comes from Medicare. Probably so. So now I have nothing and I'm suffering. The new doc gave me all the epilepsy/parkinson prescriptions but every one made me sick. So I'm in limbo.

stjohnh
Posts: 527
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: random rant about a doctor

Postby stjohnh » Fri May 04, 2018 8:30 pm

How about medical marijuana and/or kratom. Both help lots of folks here.

Also it is fairly likely that your doctor didn't know the best way to prescribe the meds you have tried. You may do just fine on a low dose of pramipexole (mirapex). Try half of a 0.125 mg tablet. I bet what you were taking before was much higher dose than that.
Blessings,
Holland

yawny
Posts: 224
Joined: Sun Nov 08, 2015 4:20 pm

Re: random rant about a doctor

Postby yawny » Sat May 05, 2018 12:23 am

Barbeegee,

There is a well respected RLS specialist many people on this board reference and see, Dr Buchfuhrer, and he specifies on his website that benzos are the “first class of medication to be considered for mild RLS/PLMD problems which occur only at bedtime/sleep and do not regularly impair sleep...”. See the link below for all the information. Often times we have to educate our doctors and we do this by providing documents that the experts have made. Maybe your current doctor would be open to this?

http://www.rlshelp.org/rlsrx.htm#Sedatives

If not, maybe you should find a new doctor who will prescribe Xanax to you. I’m hoping there is a doctor who will listen to you and take into consideration that Xanax has been working for you all this time and at such a low dose. Many of us here believe that if something is working well then don’t change it. I started out using Xanax and it worked for me as well. Unfortunately I had to keep increasing my dose for it to continue being effective, so my doctor and I moved on to other options.

For over fifteen years, my mother was taking a benzo (klonopin) for sleep problems (not RLS) well into her late 70s when she finally came off of it. During that time, she easily found doctors to prescribe it but always with a stern message of “you need to get off this drug, it’s hard on your brain.” She finally came off because she kept having to increase her dosage for it to be effective. Coming off has been very, very difficult for her. I imagine you are having a rough time just in this regard, not to mention the RLS and lack of sleep. The side effects of withdrawal from a benzo can be very challenging. Did you stop cold turkey, or have you been able to taper off slowly?

janicedesigns
Posts: 1
Joined: Sat Apr 07, 2018 2:08 pm

Re: random rant about a doctor

Postby janicedesigns » Mon May 07, 2018 6:12 pm

At least it is better than it used to be. Fewer people make light of it; more people know about it. I remember the exact moment that I read my first article about it in a Johns Hopkins Newsletter. At that time I had had the disease for 40 years but didn't have a name for it and wasn't sure as to whether it was psychosomatic or not. The knowledge and validation I got from reading the article changed my life. Don't suffer in silence. Ask for what you need (an aisle seat for example).

ViewsAskew
Moderator
Posts: 15131
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: random rant about a doctor

Postby ViewsAskew » Fri May 11, 2018 11:01 pm

janicedesigns wrote: The knowledge and validation I got from reading the article changed my life. Don't suffer in silence. Ask for what you need (an aisle seat for example).


I felt similarly! And, excellent advice - it may not be fun, but it's worth it to speak up and work to find medical practitioners who listen, understand, and can treat it appropriately.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.


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