Lifetime RLS/WED here to say hi!

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s14james
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Joined: Tue Oct 09, 2018 1:31 am

Lifetime RLS/WED here to say hi!

Postby s14james » Tue Oct 09, 2018 3:48 am

Hi everyone!

My name is James and I am a lifetime sufferer (hate that word but can't think of a better one right now) of RLS/WED. I'm now 26 and have experienced RLS basically every night of my life. Up until about 12 months ago I never had a name for it, but my parents used to call it the "wriggle worm" when I was a kid, which I think is a perfectly fitting description!

My partner and I bought our first house earlier this year, and since sharing a bed with her I have really started to feel the effects of not sleeping well. My work performance dropped off dramatically (I am an Exercise Physiologist), I started noticing more low mood and low motivation episodes, and just felt tired ALL the time. My diet is quite good and balanced, and I work out at least 4 times a week. We decided I needed help, and saw a great sleep physician in our town. Since then we have tried the entire gamut of medications:

Gabapentin:
- Started at 100mg, worked up to 900mg. Noticed a definite improvement in sleep quality, but side effects outweighed the benefits
- Blurry vision, trouble focusing, stumbling over my words etc.

Clonazepam:
- Worked well on and off, but missed a dose one night and had a mini withdrawal attack (blood pressure through the roof, heavy feeling limbs, dizziness) which scared me off it

Belsomra:
- Rubbish. Stayed awake tossing and turning until 3am most night

Seroquel:
- Made RLS 10x worse!

Lyrica: (currently still on this)
- 50mg dose seems to make my sleep architecture better, but I get slight blurry vision and just feel not quite 100%
- Have heard some horror stories which plays on my mind

Armodafinil: (Take on and off for big work days)
- Sometimes see a 20% improvement in alertness/energy, but usually just feel slightly twitchy/headachey/nausea

I have been recommended to try Magnesium oil, which I plan to take once I've trialled the Lyrica for long enough (it's been 4 weeks), but am feeling close to the end of my tether. My work performance and motivation to push through challenges is close to zero, which I hate as I am traditionally a very motivated and driven person. It sometimes feels like a hopeless situation, and I'm hoping through this forum I will find a few more answers that will give me my life back. I feel far too young to not have energy.

Thanks for reading :)

James

ViewsAskew
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Re: Lifetime RLS/WED here to say hi!

Postby ViewsAskew » Tue Oct 09, 2018 8:19 am

Hi James,

So sorry to hear you are going through this. I've had PLMS (periodic movements in sleep) since I was a toddler and RLS since my early teens. Definitely not fun!

One of the first things your doc should do is blood work. The RLS Foundation has a lot of info for members, including pamphlets you can take to your doc. That can help them understand what to do and may be better than saying, "I found it on the internet!" Serum ferritin is the most important, but a regular hemoglobin test is important, too. Low ferritin is a hallmark for many of us.

Not sure why your doc tried a few things he/she did...they are NOT good RLS meds, particularly the Seroquel. This is a drug that would ALWAYS make RLS worse.

How long did you stay on the gabapentin? Could be that you needed more time to adjust. Though, I say that and I never adjusted. I always felt tired and heavy, for lack of a better word. Then again, since Lyrica works, seems staying on it is a better thing than going back to the gabapentin.

One class your doc did not try was the dopamine agonists. Am starting to fall to sleep as I type from the meds...someone else will tell you more. Also did not try opioids, but no reason to at this time.

Magnesium oil is unlikely to help. Check out the A Good Place to Start post at the top of the Just Joined section - lots of general info in there.

Welcome - hope we can help. And, with that, I am off to bed before I type something silly, lol!
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.

s14james
Posts: 4
Joined: Tue Oct 09, 2018 1:31 am

Re: Lifetime RLS/WED here to say hi!

Postby s14james » Tue Oct 09, 2018 9:12 am

ViewsAskew wrote:Hi James,

So sorry to hear you are going through this. I've had PLMS (periodic movements in sleep) since I was a toddler and RLS since my early teens. Definitely not fun!

One of the first things your doc should do is blood work. The RLS Foundation has a lot of info for members, including pamphlets you can take to your doc. That can help them understand what to do and may be better than saying, "I found it on the internet!" Serum ferritin is the most important, but a regular hemoglobin test is important, too. Low ferritin is a hallmark for many of us.

Not sure why your doc tried a few things he/she did...they are NOT good RLS meds, particularly the Seroquel. This is a drug that would ALWAYS make RLS worse.

How long did you stay on the gabapentin? Could be that you needed more time to adjust. Though, I say that and I never adjusted. I always felt tired and heavy, for lack of a better word. Then again, since Lyrica works, seems staying on it is a better thing than going back to the gabapentin.

One class your doc did not try was the dopamine agonists. Am starting to fall to sleep as I type from the meds...someone else will tell you more. Also did not try opioids, but no reason to at this time.

Magnesium oil is unlikely to help. Check out the A Good Place to Start post at the top of the Just Joined section - lots of general info in there.

Welcome - hope we can help. And, with that, I am off to bed before I type something silly, lol!


Hi mate!

Yeah had serum ferritin done and was normal, had the sleep study and all that jazz too. In regards to strange choices, yeah a few exploratory ones. I'm allergic to opiates which limited some (questionable) options, he gave the reasoning with seroquel that it has a SMALL chance of helping symptoms (which I haven't seen much evidence of from my dr Google research), to try before moving on to anything more heavy handed. Staying away from dopaminergic right now because I'm young and he doesn't want to risk augmentation this early, which is fair.

Getting there slowly, but not exactly enjoying the process thus far!

James

Rustsmith
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Re: Lifetime RLS/WED here to say hi!

Postby Rustsmith » Tue Oct 09, 2018 10:34 am

James, welcome and sorry that you had to find us. Most of us have spent a lifetime with this condition and it is not fun. Educate both yourself and your partner since this is a condition that impacts both of you and you will need support at various times in the future.

Did you find out what your ferritin number was? "Normal" for the general population is anything over 20, but for RLS it needs to be at least 75 and preferably something over 100. Increasing iron helps many, but not everyone.

As for her tests of various sleeping pills, most of them are not effective for RLS because they treat something that is not a problem for us.

And I agree with Ann that they next step is probably one of the dopamine agonists, such as Mirapex. It is a favorable sign that your doctor did not start with these since they will probably not be a lifetime solution for you, but hopefully you will be one of the lucky ones and have them work for a number of years before they cause augmentation (which you can read about in our Augmentation forum).

As for magnesium oil, a few who have mild RLS and a magnesium deficiency find it helpful. But for those of us with significant RLS, it usually has no effect.
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.

stjohnh
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Re: Lifetime RLS/WED here to say hi!

Postby stjohnh » Tue Oct 09, 2018 6:01 pm

Hi James, Yup, it’s time to try a dopamine agonist like pramipexole. Be sure and start at the lowest dose possible and don’t increase the dose unless absolutely necessary. Echo: find out the ferritin number. Should be a minimum of 75.

Also, intravenous iron therapy is coming up as an important treatment, a recent paper by the international restless leg Study group now lists intravenous iron as a first-line treatment for restless leg syndrome.
Blessings,
Holland

Mugsy
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Joined: Fri Sep 07, 2018 6:08 pm

Re: Lifetime RLS/WED here to say hi!

Postby Mugsy » Tue Oct 09, 2018 9:40 pm

I first noticed RLS in my mid 40's. Thought I was having leg cramps, finally went to the doctor and he recommended Benadryl and it worked for 5-6 years.

I'm 68 now, and am taking 4 different prescriptions for RLS, and I'm getting a good night's sleep. I get terrible anxiety attacks just THINKING about RLS.

Sorry to hear that you developed this at such a young age, they might find a cure by the time you're 68!

I often wonder what people with RLS did years ago. I'm sure there were many sad endings to many lives. Sleep deprivation is something that you can't just live with.......Mugsy

ViewsAskew
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Re: Lifetime RLS/WED here to say hi!

Postby ViewsAskew » Tue Oct 09, 2018 10:11 pm

yeah, to echo the others - you need to know the ferritin range. Also, some doctors (such as the ones studying iron at Johns Hopkins) have no problem getting ferritin into the 300s.
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.

s14james
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Re: Lifetime RLS/WED here to say hi!

Postby s14james » Wed Oct 10, 2018 2:10 am

Hi everyone,

Thanks for the replies! I'll check the iron level, I'm due to see the sleep physician soon so will bring that up! Agreed that sleep deprivation isn't a way to live. I feel like I'm missing out on so much of my potential.

I'll look more in to dopamine medications as well, am having somewhat decent success with pregabalin, but just feel a bit off with the fairies all day.

Appreciate the replies :)

James

badnights
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Re: Lifetime RLS/WED here to say hi!

Postby badnights » Thu Oct 11, 2018 7:47 am

I have to disagree with the others about the dopamine agonists, because you haven't tried enough other things yet, and because of the eventual negative impact they will undoubtedly have.

I echo what Steve said about your ferritin levels - get the actual number. Some WED patients need ferritin levels as high as 300 to avoid symptoms. Not everyone benefits from raising blood levels of ferritin - the problem, after all, is brain levels, which are not necessarily reflected by blood levels - but many of us are. Oral iron taken with vitamin C once a day, one or two 325 mg pills of ferrous sulfate (each has 65 mg elemental iron). This by itself might reduce the severity of your symptoms noticeably. I can get by on much less medication by taking iron every day. Before you take iron, you should be sure (by checking with your doctor) that you're not in danger of hemachromatosis.

Next, I echo Holland - check into getting iron infusions. There is a paper by the International RLS Study Group that you can show your doctor - I will add it to the ones available in the page that my signature link opens. Infusions can be more effective than oral iron.

I strongly recommend that you investigate diet options. I was able to reduce my medications to 1/3 of what they had been by changing my diet. I decided to try it because I had kept running across anecdotes from people who went gluten-free, so that's what I started with. It seemed to help, so my doctor suggested I try dairy free as well, and then suggested I try the Wahls diet. I began to reduce my medications every few months as my symptoms improved. This is not to be sneezed at. The problem is, there is no hard and fast rule about what constitutes a healthy diet, what your body needs is not necesarily what mine needs, - but as you said, you're young, and the medication route is a miserable one.

Make sure your body is getting all the micronutrients it needs. For lack of a better standard, you can assume the FDAs minimum daily requirements are valid, (although I think it's now accepted that they;re too low for vitamin D). But there are micronutrients that the FDA doesn't talk about, like phytonutrients. The Whole 30 or the Wahls diet (basically a paleo diet with lots of different vegetables and some fish and organ meats) - no added sugar, very low carbs (easy on the fruit), higher fat to make up for less carbs, reduce the amount of processing your foods have undergone - no hydrogenated or modified oils or staches, minimize additives, and avoid most grains. There are reasons for all of this. I like the book Genius Foods, but there are a lot of books out there saying much the same things. Avoid loading up on carbs because they cause insulin spikes which will mess you up in many ways.

Many of us have low vitamin D, which is required for a healthy myelin sheath (coating on nerve cells). There is some evidence that low D might correlate with increased WED/RLS symptoms, but nowhere near the quality and quantity of evidence that links low brain iron to WED. You can safely add up to 4000 IU of vitamin D daily without needing a blood check, according to my doctor.

Finally, I know nothing about opioid allergies, but I find myself wondering if you're sure-sure that you;'re allergic to all of them, if there might not be some you can handle. If you're allergic to all opioids, that will seriously limit your options, because opioids are the only thing (so far) that helps severe cases. Usually an opioid in combination with very low dose or rotating dopamine meds and/or anti-convulsants. The rate of addiction in WED/RLS is even lower than it is in pain patients, whose addiction rate is already pretty low, compared to the general population. However, there can be side effects from long-term use like endocrine disruption, which makes even opioid treatment an unsatisfactory long-term option.

So, before I went the DA route, if I were you, I would add oral iron, try to an infusion, add vitamin D, and investigate all lifestyle changes that might help, starting with changing my diet. Give it a few months, and see if anything is better.

Once you augment on a DA - and perhaps even before you do - you will have a much bigger problem than you have now.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

ViewsAskew
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Re: Lifetime RLS/WED here to say hi!

Postby ViewsAskew » Fri Oct 12, 2018 12:13 am

However...playing devil's advocate. IF we get the iron over 100, then use DAs, alternating - say - once every year for a month with opioids - we likely could use them for many, many years.
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.

badnights
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Re: Lifetime RLS/WED here to say hi!

Postby badnights » Fri Oct 12, 2018 4:30 am

True. That would be a sensible option. Much better than straight DAs. But I still think all the ohter things I mentioned should be done first. Maybe diet concurrently, if James is going nuts and can;t stand it any more.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

ViewsAskew
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Re: Lifetime RLS/WED here to say hi!

Postby ViewsAskew » Sat Oct 13, 2018 12:14 am

Agreed.
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.

s14james
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Re: Lifetime RLS/WED here to say hi!

Postby s14james » Tue Oct 16, 2018 12:14 am

Hi guys,

Booked in with sleep physician on 8th Nov, so will find out all the crucial details then!

I like to think my diet is quite good, however I do eat a lot of dairy. I'll look into vit D as well, as I spend a lot more time indoors now with my current job, which correlates with an increase in poor sleep.

Currently on week 5 of Lyrica, and I can say it does work, however my eyes feeling slow and tired isn't fantastic while driving!

James

curqlink
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Re: Lifetime RLS/WED here to say hi!

Postby curqlink » Tue Oct 23, 2018 3:51 pm

I started taking Lyrica a few months ago. Hated it at first and almost stopped taking it altogether because of side affects. But i stuck with it and while i have had to increase my dose a couple times...the side affects have become tolerable over time. I went from feeling like a zombie all day to just feeling somewhat groggy and tired most of the time. A price i am willing to pay to be able to sleep.

badnights
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Re: Lifetime RLS/WED here to say hi!

Postby badnights » Wed Oct 24, 2018 6:09 am

I went from feeling like a zombie all day to just feeling somewhat groggy and tired most of the time. A price i am willing to pay to be able to sleep.
I've made choices that led to similar situations. I have wondered, sometimes, why I traded being tired all day from not sleeping for being tired all day from drugs.

My main issue with pramipexole, besides augmentation, was sleepiness and slowed reflexes, so it's not an option for me to use in rotation or combination as other people do. I dropped trazadone from 50 mg nightly to 25 mg on 5 nights out of 7, because it was making me groggy. I knocked zopiclone down from 7.5 to 3.2 mg, same reason. I stay up later and get less sleep, just so I can be more alert the next day. It's a series of unpleasant compromises.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.


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