is it possible to find a long term solution

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richviv
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Joined: Wed Apr 16, 2014 8:55 am

is it possible to find a long term solution

Postby richviv » Tue Mar 08, 2016 6:47 am

I have had RLS/WED for many years. Although the med I take helps, I still struggle every day with symptoms. I assume , with really no bases for doing so, that most people with RLS/WED, like me, with medication, only have fewer symptoms but do not find a long term 'solution' (rare or no symptoms). Maybe I am wrong. Is it reasonable for me to believe that if I kept looking for the perfect or, at least much better medication, I might find it. Are you symptom free? Can I be?

ViewsAskew
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Re: is it possible to find a long term solution

Postby ViewsAskew » Tue Mar 08, 2016 7:07 am

I am not symptom free. But, I don't struggle daily, either, at least not with symptoms. My biggest issues are side effects from meds, but I've been able to reduce those by changing meds.

I do believe that there are bad, poor, good, better, and best options, but that each of us has a different option to get us there. Pramipexole alone, for me, was bad, as were a few others. Methadone alone was between poor and good. Better was when I started alternating and mixing. Better only happened after two infusions - I need fewer meds than I did. I don't think I've found best, yet. And, sometimes my better is only good. But, I haven't suffered daily for a long time. If I am late taking them, I suffer. When my hormones fluctuate, I suffer. And, sometimes it's just bad I have no idea why. All in all, that is usually only 5-7 days a month. I have mild symptoms during the AM many days, but they go away easily with some movement. They rarely last more than a few minutes and I don't even count them as problematic.

In the 11-12 years I've been taking meds, I've been terribly discouraged at times and have often thought what you just articulated. I'm now mostly hopeful that if we all keep trying AND if we have a supportive doctor, we can at least get to good and some of us can fine better and best. A few of us seem unable to.
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.

Joanie60
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Re: is it possible to find a long term solution

Postby Joanie60 » Wed Mar 09, 2016 4:12 am

I'm not sure I ever go more than three hours in a row without being aware of my RLS. Yes, methadone has helped tremendously. But being symptom free for 24 hours? In my book, that is right up there with winning the Powerball. I have been on every drug invented for RLS. And methadone (15mg per day) makes it possible for me to work, sleep, and usually cope with most everything that life throws at me :wink:

About once or twice a week, I am close to tears. Symptoms creep up before med time (10:00am and 5:00pm) and as most of you probably know...once symptoms hit, it is too late to take meds. I mean, I take them, but know it will take at least 2-3 hours for relief. While the methadone is working, I still have symptoms but they are mild enough that I can rub, stretch, or walk them away.

The real kicker right now is that the doctor who took over my case 12 months ago has decided that she doesn't want me on methadone!!! She gave me two reasons..1) possible heart interaction between Lexapro and methadone and 2) pressure on providers to stop prescribing opiates. I kicked depression some time ago but found that Lexapro was very helpful with my hot flashes. I am getting an EKG and have weaned off Lexapro (hot flashes are NOTHING compared to RLS). She said we would talk about it at next appointment when I get back from Germany in April. She wants me to try Lyrica. How do I politely tell her to read my freaking chart. My former doc in same practice put me on every single RLS drug (on and off-label) that is manufactured!!!

I am trying to put it out of my mind until the appointment. The thought of going thru all those damn drugs again is exhausting. The side effects ranged from weight gain to heart pain and loopy thoughts and of course, augmentation. I realize we have an opiate epidemic on our hands but I am not one of the casualties. I have taken percocet and methadone responsibly and as prescribed for years.

I am blessed with the best and most understanding husband in the world. I know he will help me get the courage to advocate for myself. I am NOT drug seeking. I just want the best relief available...which still pretty much sucks, but without it, I do believe I would have to stop working. Not an option as we are self employed and all the work load would land on his shoulders.

Ok, sorry I am rambling. I am just so damn discouraged that on a whim, the rug can be pulled from underneath me because my doc decides she wants her opiate prescribing to go down??? By the way, she is affiliated with Hopkins and Dr. Allen/Early...scary, isn't it.

jul2873
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Re: is it possible to find a long term solution

Postby jul2873 » Wed Mar 09, 2016 5:41 am

Kratom affects the same mu receptor as a regular opioid does, so it might work for you. And, unless you're in one of the handful of states that have outlawed it, it's legal and easy to order from the Internet. I love that I can figure out myself what level of dose works. I've been using it daily for almost three years, and so far have very good control over my symptoms.

I did read that new research is suggesting that the low oxygen levels in the blood of RLS sufferers may cause the symptoms. And I know that one other thing kratom does is make more flexible the walls of blood cells, thereby lowering blood pressure. And also, I think now, lowering RLS symptoms.

ViewsAskew
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Re: is it possible to find a long term solution

Postby ViewsAskew » Wed Mar 09, 2016 5:52 am

Joanie - so sorry to hear that. And, yes, it IS scary. Long ago, I drove 60 miles each way to see my prior primary care doc who helped me with augmentation when no neuro in the city would. He worked with Dr B and treated me for 4 years. I left because I finally found someone in the city. When that doc freaked out and wanted me to do what your doc does, I made an appt with this PC doc. He had the nurse call me the day of the appt and tell me not to come if that is why I was coming - their practice had decided not to prescribe any of these drugs any longer.

As you do, I completely understand the pressure and that there is an issue. But, there are many ways to deal with it without refusing to treat people who truly need it.
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.

richviv
Posts: 22
Joined: Wed Apr 16, 2014 8:55 am

Re: is it possible to find a long term solution

Postby richviv » Thu Mar 10, 2016 10:12 am

:| Thank You for your replies. I wish life was always easy and I could always be 39 years old, but.....After reading the replies, I feel uncomfortably better, in that , well, it could be worse. I am sort of stable in my current state , I may have over played the struggling a little , but then, as some one mentioned, there are times, when life seems so unfair, and as you know, the symptoms of RLS/WED are actually quite unpleasant and can not just 'be ignored' . In my life I have been seriously depressed ,so, I , tell myself, that you must not allow this problem to cause depression, that this is the only life I will ever have, so despite the sometimes cruel things that happen to me,that I must be as happy as I can . As I am retired, The 'secret', for me anyway, to avoid depression, as I seemingly can not avoid all the sh** life hands out, is to get up each morning with so many things I want to accomplish that, when I go to bed that night, I am wishing I would have had more time that day to get things done. My father used to say 'He was busy accomplishing nothing' , I amend that by " I am busy accomplishing things that only matter to me"
I apologize for rambling, but , one more comment. I am not a big fan of Doctors. They are mostly nice people, but , perhaps understandably, they are mostly 'cookie cutters' . not creators or thinkers, and I hate begging them to try to understand that it might help me for them to "think outside the box'

Polar Bear
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Re: is it possible to find a long term solution

Postby Polar Bear » Thu Mar 10, 2016 1:01 pm

I think that doctors, certainly the GPs, are fearful of 'thinking outside the box'. There are so many restrictions, rules, checks.......
And of course, to think outside the box also takes enthusiasm, energy and research of information which is time consuming without financial return. The return would be the satisfaction of helping a sufferer of RLS/WED - My own GP told me that in his medical training there was one lecture on RLS.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Rustsmith
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Re: is it possible to find a long term solution

Postby Rustsmith » Thu Mar 10, 2016 3:21 pm

In my own field, where I advise graduate students working on the PhD's as well as meeting with colleagues from other labs, I find that even most researchers find it very difficult to "think outside the box" unless really pressed to do so. It is simply too much easier to follow the party line and take the same path that everyone else takes. The risk of hitting dead ends or trying something that is doomed to fail is usually viewed as being too risky to their career. For those of us who can see past that barrier (often because they are still young and willing to make mistakes), the payoff can be great. Unfortunately, there are far too few who are willing to take those risks in our current research organizations and almost all doctors treating patients will also fall into that same category.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

Joanie60
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Re: is it possible to find a long term solution

Postby Joanie60 » Thu Mar 10, 2016 3:41 pm

Excellent analysis Steve. Particularly frightening when the staff of Dr. Early & Dr. Allen are now pushing back on opiates. I'll give an update after my appointment in mid April.

Rustsmith
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Re: is it possible to find a long term solution

Postby Rustsmith » Thu Mar 10, 2016 6:42 pm

That is a cause for concern, especially if they are trying to push those of us for whom DAs and alpha-2-deltas either do not work, cause unacceptable side effects or if we have augmented. I see a new doctor next week and have to travel 100 miles to the state's medical school because no one locally will prescribe opiates. If she will not either, I could be in a world of hurt. I am already shaking in the AM as if I have Parkinson's. MJ helps, but it is not effective enough to be my primary medication.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

Polar Bear
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Re: is it possible to find a long term solution

Postby Polar Bear » Thu Mar 10, 2016 8:27 pm

Steve, I really hope your new doctor has empathy and experience and is willing to prescribe what is necessary.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Joanie60
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Joined: Thu Mar 15, 2012 2:48 pm

Re: is it possible to find a long term solution

Postby Joanie60 » Thu Mar 10, 2016 8:48 pm

Ditto. Please let us know!

ViewsAskew
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Re: is it possible to find a long term solution

Postby ViewsAskew » Fri Mar 11, 2016 3:19 am

I cannot read threads such as this without alternating between extreme anger, almost overwhelming empathy, and fearsome anxiety that at any point, any one (or many of us) could literally be without help we need.

it's just wrong, wrong, wrong, wrong.
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.

Joanie60
Posts: 194
Joined: Thu Mar 15, 2012 2:48 pm

Re: is it possible to find a long term solution

Postby Joanie60 » Fri Mar 11, 2016 3:27 am

THAT is what I am wrestling with right now Ann. My confidence that I will be understood, given tools for healing and comfort, be heard, and be in partnership with my doctor just got flushed down the toilet. I feel like, even if my Doc comes to her senses and continues to prescribe Methadone, she can change her mind again at any point whatsoever. One "off the cuff" email to me and my security is gone.

Then I tell myself to chill the heck out, listen to her at the appointment, and see what the concerns are. I think it is mainly that she "inherited" me from another doctor over a year ago. If she reads my chart, she'll perhaps have a better understanding of my situation. It's just such strange timing. I've never gotten a duplicate prescription, never "doctor shopped", never gotten a script filled early. For 14 months, everything has gone like clockwork. Then she gets an idea, and tells me she is going to put me on Lyrica (which I have been on) and wean me off methadone. Out of thin air. Where did this come from??? I guess I'll find out in April!!

Peace guys, and thanks for all the support and comfort!

Sojourner
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Re: is it possible to find a long term solution

Postby Sojourner » Fri Mar 11, 2016 5:58 am

Not much to add but just want to wish each of you so much luck and hope that you will have more good days than bad and that


all who visit here will find some peace this night.
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