There's hope for some of y'all....

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.
knoxtnhorn
Posts: 28
Joined: Wed Feb 12, 2014 12:05 am

There's hope for some of y'all....

Postby knoxtnhorn » Thu Apr 27, 2017 5:14 pm

Disclaimer: Before I begin my diatribe, please understand that this, in no way, is an attack against anyone with RLS OR the meds they take. I am solely writing this in hopes that it may help someone that, I guess, may have a similar internal chemical makeup that I do. We all respond to medications differently - hence the amount of topics in this forum.

I first mentioned my restless legs about 5 years ago. Since then, I have commented or started multiple threads on this sight in search of help. Honestly, the only medicine that truly helped my RLS was the occasional hydrocodone that I took whenever I happened upon a sports injury. Here is the text from a thread I started last November when I was just about on the verge of going crazy.

I was wondering about something. So I started on RLS prescrips about 5 years ago due to, what I thought to be, pretty severe symptoms of RLS. What I didn't anticipate was that my definition for severe was severely underestimated. What I mean is that the symptoms I've been dealing with over the past year, using different meds, are FAR, FAR worse than the symptoms I had when I first began taking meds. Quick history:

Started Mirapex around 2013.
Switched to Requip around 2015.
Switched to Neupro several months ago.

Each switch coincided with the previous med losing effect. Now with Neupro, I'm having about a 60% success rate meaning 40% of the time I'm in excrutiating pain and terrible, sleepless nights not to mention side effects of overeating and leg pain. I've added Trazadone for the past 2 months with varying levels of success.

I'm set to see two different doctors in November. The first is a neurologist; the second is a sleep doctor.

So my question is thus: If I were to completely wean myself off of all drugs, would my symptoms go back to what they were before I took any meds or have I created a cycle in which my body will always "need" the drugs for normalcy? I'd really like to go back to where I was before I started the prescrips. I had occasional bad nights but they were nothing compared to what I'm dealing with now.


Here's what happened next.

After some pretty severe symptoms from the Neupro patch (blisters at the application point, eating disorders, sporadic success sleeping), I went to a neurologist that specialized in sleep disorders in November. I was switched to something (I can't recall the name) that was for anxiety. I knew this was going to be a disaster. Over the next 6 weeks, I went from this prescrip to another then another. Each time I called the neuro (getting an appt took over 3 months), I was just prescribed a new drug. At one point, my legs were so bad that I ended up punching them late one night, missing a punch, and accidentally hitting my bike trainer, sending me to the ER with, what I thought to be, a broken wrist.

On another occasion, I ended up at school (I'm a teacher) in such a zombiefied state that, luckily enough, another teacher saw me and sent me home before the principal saw me. It was a combination of having no sleep for 3+ nights plus whatever side effects that particular drug were giving me at the time. I think I went through 3-4 different drugs that were sent to my pharmacy without any explanation as to how I was to take them. I just went by the label which, for at least 2 of them, were instructions for another type of issue (anxiety). Needless to say, the absolute hell over last summer that led me to finally seeing a neuro was nothing compared to what I was going through during this 6 weeks.

Needless to say, I was at a total loss. I was tired of these drugs and the side effects. I didn't want to take the route of trying to find a doctor that prescribes narcotics. It just so happened that I had a problem refilling my prescrip right around Christmas so I said, "F it" and decided to just stop everything cold turkey. I figured it couldn't be worse than what I was already dealing with.

Now to the point of this extremely long post. It is now April 27th and I have not had ONE ISSUE WHATSOEVER WITH RLS. I waited several months to put this info on here in case I was just going through some sort of honeymoon phase whereas the symptoms would return. Not only do I sleep - 8 hours every night, but I also do not have any symptoms during the day. My wife has occasionally seen me just laying on the couch, wide awake, doing nothing. I've told her it just feels so good to be able to sit still. (My symptoms got so bad at times that having something like the flu or a severe cold were even worse than normal due to the fact that I didn't have the ability to just relax and recover.) I am also not having any other tertiary symptoms. I no longer wake up 4-5 times a night feeling the odd need to eat. I don't have times during the day where I'm so tired I almost fall asleep standing up. I no longer actually hope that I get hurt enough to have to get a hydro prescription.

To the point. The reason I write this is to offer hope to some out there. Yes, I realize that we're all different and that, what worked for me, may not work for others. Perhaps I never truly had RLS and the meds had the opposite effect and just drastically enhanced my inability to sit still. (I've always been pretty hyper.) Nevertheless, I just wanted to include my own story in case it helped others. If it worked for me then perhaps some of y'all might also see improvement at some point in the future. I know what some of y'all are going through and pray that everyone on this board obtain some sense of normalcy at some point. In the meantime, thanks to everyone on here that offered assistance, advice, hope, and courage to me through the years. Take care.

ViewsAskew
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Re: There's hope for some of y'all....

Postby ViewsAskew » Thu Apr 27, 2017 8:05 pm

Wonderful news. I do believe that some of these drugs can cause horrible worsening of symptoms until it isn't what we had in the first place. Pharma meds are not always appropriate.

Hope you have a very, very long reprieve.
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.

legsbestill
Posts: 349
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: There's hope for some of y'all....

Postby legsbestill » Fri Apr 28, 2017 5:20 pm

Thank you so much for posting this. It is lovely to read of anyone who has a good outcome. I am delighted for you. I would not be particularly surprised to find that the d/as can induce rls type symptoms where none are underlying.

I have often wondered whether the given wisdom that rls very rarely abates is actually true. As I understand it, it is a very under-reported condition - so many on this and other forums say that they suffered for years before going to their GP.

Surely there is a real possibility that there are many out there who suffered - maybe even for years - and then the rls resolved so that they never went to their GP? Thus their resolved rls goes unreported. It is those who have really severe rls or who have rls that never resolves that end up being treated medically. This is the rls sufferer who is recorded and is the founder of the statistic that it is a condition that is unlikely to resolve.

My mother tells me that a good-ish number of her friends report that they used to suffer from rls but that it went away again. She is infuriatingly vague and I sometimes wonder if it is a ruse by her to infer that I am making more of my symptoms than they justify (this is a recurring theme with her which I have observed her using with my three brothers as well as me and none of them is particularly histrionic or hypochondriac and I don't think I am either - of course my mother is at fault just as she is to blame for all the woes in my life which she could have prevented by the simple expedient of being a better mother). However there is a possibility that she is accurately reporting her friends' experiences and there is a large cohort that experiences rls for a while, doesn't seek medical assistance and then the rls resolves. Because they never got as far as a doctor, no record is ever made of their case of resolved rls. We can hope ...

QyX
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Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: There's hope for some of y'all....

Postby QyX » Fri Apr 28, 2017 10:44 pm

ViewsAskew wrote:Wonderful news. I do believe that some of these drugs can cause horrible worsening of symptoms until it isn't what we had in the first place. Pharma meds are not always appropriate.

Hope you have a very, very long reprieve.


Ya, I agree.

Looks like the meds you took were worsening or even creating an artificial RLS.

Don't be sad when your symptoms come back later. You won a lot of quality time.

What I wanna know is how your RLS symptoms started in the first place. Did you take any drugs at this point?

Also it is known that in some cases RLS will disappear. Maybe you always had only mild RLS and then the drugs you took made everything terrible bad?

I also noticed a big improvement when I stopped some drugs but unfortunately I do have (very) severe RLS and will be depended on opioids for the rest of my life. Being just 32 this seems to me a sad perspective.

You did the right thing.

Congratulations and thank you for your report.

badnights
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Re: There's hope for some of y'all....

Postby badnights » Sun Apr 30, 2017 9:04 am

legsbestill wrote:I have often wondered whether the given wisdom that rls very rarely abates is actually true.

Actually that "given wisdom" is probably wrong. I had completely accepted it, so I was surprised a few years ago when I came across two papers, published in one issue of Sleep Medicine, that showed that RLS/WED has low persistence. One paper reported on two prospective studies in Germany - one followed 1300 people for about 2 years, the other followed 5000 for 5 years. They found, yes, a higher incidence of the disease with age (based on new cases reported). But also a persistence, between initiation of the study and followup, of only 40 to 50%. The other paper was a Japanese study, 1500 people over 2 years, which also found the same low persistence, only about 40% of the people surveyed who had WED at the first survey still had it at the second.

Probably this reflects the course of the disease for the majority of patients who have a mild case - the disease waxes and wanes, and when it wanes, the symptoms are so mild or infrequent that the diagnostic criteria are not met.

legsbe: As for your mother's friends, maybe they suffered during pregnancy.

knoxtnhorn: I am very encouraged by your story!
I am also curious. Do you think you had only a mild or even moderate case before meds? Did you have symptoms every day, or only a few nights a week?

I can easily see DA's causing augmentation and the hell you lived through, what's new to me is the complete reversal on stopping them. That's what's supposed to happen - but Ann, myself, and others suspect that it doesn't always work that way. That once augmented, some of us never return to the pre-medication level.

Do you think you have a case of mild RLS/WED now, that is similar to before meds, but now it seems like nothing whereas before it seemed bad?

QyX's comment
What I wanna know is how your RLS symptoms started in the first place. Did you take any drugs at this point?
is a good one, my brother gets RLS/WED only if he takes certain antihistamines.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

knoxtnhorn
Posts: 28
Joined: Wed Feb 12, 2014 12:05 am

Re: There's hope for some of y'all....

Postby knoxtnhorn » Mon May 01, 2017 4:20 pm

Thanks for the kind words. I was actually worried that some might take my post the wrong way. I'm definitely not suggesting that the course of my issue is/was normal in any way nor am I suggesting that everyone should just jump of the prescription bandwagon.

I was trying to recall how bad my symptoms may have been before I finally brought it up to a doc. It's difficult because the last 5 years (w/ different meds) have been so horrible that I honestly can't say how bad it was before starting the prescrip regimen. It's possible that a huge % of my "symptoms" were psychosomatic. I'm kind of a hyper person and have always had problems sitting still. I can tell you that my symptoms after starting the prescrips were FAR, FAR worse than anything I may have experienced up to 5 years ago.

It's conceivable that my body just reacts to certain chemicals differently than most. For example, I cannot take Benadryl. I distinctly recall going into RLS attacks after taking that when I was younger. Muscle relaxers also seem to have the opposite effect on me. I also never noticed much of a difference when temporarily put on Xanax a few years ago. It just made me a tad sleepier. I was also on Ritalin while in college which worked like a dream but when switched to Adderol, I had absolutely the opposite outcome.

Bottom line is that I probably starting taking RLS prescrips due to what I perceived to be bad symptoms. The drugs, for whatever reason, seemed to have the opposite effect.

Just this past weekend, our AC went out. We couldn't get someone to look at it until today (Monday). While on the RLS prescrips this would have been an absolute living hell as being hot was one of the things that made my legs much worse. As it was, I just had 3 nights of pretty good, yet sweaty, sleep.

knoxtnhorn
Posts: 28
Joined: Wed Feb 12, 2014 12:05 am

Re: There's hope for some of y'all....

Postby knoxtnhorn » Mon May 01, 2017 4:25 pm

I'm posting as I'm trying to answer as many questions as were asked.

On a 1-10 scale, I may have been a 1 when I first started the meds. And, honestly, this 1 may be high and enhanced by the non-physical attributes of my mind. Example. When sleeping next to my wife I start thinking about how I'll wake her up if I move which makes me want to move which makes my mind tell me not to move which continues until I move. (I think most of us know this feeling.)

Whether most of my symptoms were just extremely minor (before meds) or not, I do find it interesting that my symptoms went past 10 while taking the drugs. I wonder why the prescrips would not only not cure a person's RLS but actually make it far worse.

PeteJB
Posts: 1
Joined: Mon May 01, 2017 3:49 pm

Re: There's hope for some of y'all....

Postby PeteJB » Tue May 02, 2017 7:44 am

Possible Solution
After suffering from both leg and arm RLS and having visited 11 doctors including specialists, I believe I have found the solution to RLS. It is a mix of 2 medications that don't have any side effects and, at least with me, it works every time.
I have filed a patent for the mix and will now find some people who want to try the mix and their retort will support my patent claim.

badnights
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Re: There's hope for some of y'all....

Postby badnights » Tue May 02, 2017 7:44 am

When sleeping next to my wife I start thinking about how I'll wake her up if I move which makes me want to move which makes my mind tell me not to move which continues until I move. (I think most of us know this feeling.)
Lord, yes. The same issue with window seats on an airplane.

Re Benadryl: it makes RLS/WED worse in EVERYone. It is probabaly the only substance that is universally bad for people with WED. Even people who normally don't have WED/RLS can experience it after taking Benadryl, or other first-generation anti-histamines (the ones that supposedly make you sleepy).

Re the medication making it worse. It took doctors decades to notice and to accept that dopamine medications, which work so well for the first few days/weeks/months/years (depending on the person), will eventually start to make the symptoms worse. It mimics natural worsening of the disease with time, unless it happens quickly, so the whole thing must have been tricky to figure out. But the sad thing is that so many physicians STILL aren't aware of the existence of augmentation.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice


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