Hello - I'm New to this site and thought I was going Mad!!!

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.
ireitz
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Joined: Mon Dec 24, 2012 2:13 pm

Hello - I'm New to this site and thought I was going Mad!!!

Postby ireitz » Wed Dec 26, 2012 7:10 pm

Hello - I live in a small town in South Africa and am so grateful to have found this site.
I have had RLS for about 6 or so years. About 3 years ago I found an pamplet on Pexola helping people with rls and asked my doctor if he would prescibe some for me. I had never heard of rls before, but knew that I had 'kicky legs' and often could not sleep and would pace the floor for hours. Anyway I started taking Pexola and that gave me great relief and I was not troubled by rls for quite a while. Recently I have been on a reducing diet and have lost 17kgs. My rls has returned with a vengence and even when I take double dose of Pexola it is really troublesome. I read that codeine help (on this forum) and so the last two nights I have taken 1 Pexola, 1 paracetamol tablet containing codeine as well as a sleeping pill and have managed to sleep both nights altho' I did have to lie on my stomach and kick my legs for a bit until I was almost asleep. I thought I was going mad before this. I feel at last that someone else understands what is happening and that I am not struggling with this problem on my own.

rthom
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Re: Hello - I'm New to this site and thought I was going Mad

Postby rthom » Wed Dec 26, 2012 7:56 pm

I wonder if your pexola is like our roprinerole, mirapex etc. If so you may be augmenting on it, thus causing your symptoms to be bothering you more. Have you had a ferritin level done? It may also be a clue as to what is goig on for you. Do you know what the drug clasification is that you are taking?

There is great amounts of helpful points on here and everyone is great. Let us know how we can help. And, welcome to the site.

Polar Bear
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Re: Hello - I'm New to this site and thought I was going Mad

Postby Polar Bear » Wed Dec 26, 2012 8:29 pm

I have googled Pexola and it seems to be another name for Mirapex.

rthom is correct with regard to the importance of your ferritin serum level. Iron levels can be a part of the condition. An ordinary blood test may show your iron levels as ok but it is your serum ferritin levels that need to be checked. Doctors often reckon that a ferritin level of 20 is normal but for us rls/wed sufferers it should be at least 100. This test is usually not done as a matter of course when having bloods done and you should specifically ask that your ferritin is checked. Ferritin levels tell us what iron is stored in our brain, rather than the iron that is flowing in our blood. A higher ferritin level can help avoid the possible side affect of augmentation which can happen with a medication such as Mirapex/Pexola.

The RLS Medical Bulletin is a wonderful source of information and can be accessed via the link in my signature. It is an excellent discussion paper for you and your doctor

This book is excellent (for patients that physicians could also learn from) -
Buchfuhrer, Hening, and Kushida, 2007. Restless Legs Syndrome; Coping with Your Sleepless Nights. Dr Buchfuhrer who is one of the authors has a site http://www.rlshelp.org/ which also gives lots of information and has hundreds of question and answer letters that are very useful. Dr B is a wonderful support and will answer email requests for guidance and advice.

Requip, and Mirapex which is similar, are the first line for treatment. There are then the anti-convulsants such as Lyrica and most people find opiods to be excellent at relieving symptoms but many doctors are reluctant to prescribe opiods. If your GP is RLS aware, or is willing to learn, he can be your best friend.

Has anything changed recently - make sure that none of your current medication is aggravating your rls/wed, such as anti-depressants, benedryl, antihistamines, anti nauseants, also alcohol and nicotine.

There is a great deal of information throughout the site and indeed I was desperate when I found this group. The information led me to treatment and to some semblance of normality.......

The codeine in the codeine/paracetamol tablet probably helped - how much codeine did it contain. If it was an over the counter medication there probably wasn't a lot of codeine, perhaps 8mg per tablet.

Also if you are on a reducing diet have you been drinking much diet soda, the aspartame (sugar replacement) can have a bad effect on symptoms.

Please ask anything you like and we will try to help.
None of us are medical doctors but we do have a lot of experience of dealing with 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

ViewsAskew
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Re: Hello - I'm New to this site and thought I was going Mad

Postby ViewsAskew » Wed Dec 26, 2012 8:53 pm

Welcome - so sorry you had to find us - but glad you did.

Rthom and Polar Bear hit on great points. Read some, ask questions. We're here to help.
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.

rthom
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Re: Hello - I'm New to this site and thought I was going Mad

Postby rthom » Wed Dec 26, 2012 9:19 pm

I have been told that some of the codine tablets have to contain caffene in them and I often wonder whether the caffene complicates the rls thus making the codine less effective.....hmmmm:-{
Just a thought.

badnights
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Re: Hello - I'm New to this site and thought I was going Mad

Postby badnights » Thu Dec 27, 2012 12:28 am

oh that's quite true, but as far as I know only in Canada. Caffeine is added to T3's etc. Also they add caffeine to medicines for menstrual pain, it drives me nuts because I take them to kill the pain so I can sleep, the first time I took them after they added the caffeine I didn't know what was going on, boy I was some enraged when I looked at the ingredients and saw caffeine.
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.

debbluebird
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Re: Hello - I'm New to this site and thought I was going Mad

Postby debbluebird » Thu Dec 27, 2012 7:01 pm

The reason they had caffeine is that is helps with certain types of pain.
DEB

badnights
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Re: Hello - I'm New to this site and thought I was going Mad

Postby badnights » Sat Dec 29, 2012 1:46 am

There is some evidence, controversial, that it helps with migraines.
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.

rthom
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: Hello - I'm New to this site and thought I was going Mad

Postby rthom » Sat Dec 29, 2012 1:52 am

my dr told me it was put in to counter-act the tiredness of the drug. But I wonder if that is the case why just that one?? Unless it's to make it less apealing to those inclined to use it as a recreational drug. Hmm

badnights
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Re: Hello - I'm New to this site and thought I was going Mad

Postby badnights » Sat Dec 29, 2012 1:54 am

I think it is a law of some kind; it's a government-dictated thing. Whatever the reason, it has to be assinine.
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.

ireitz
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Joined: Mon Dec 24, 2012 2:13 pm

Re: Hello - I'm New to this site and thought I was going Mad

Postby ireitz » Wed Jan 02, 2013 7:36 pm

Thank you for all the help and advise I have received to my post. I will get my iron levels tested as suggested. Thank you again.

badnights
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Re: Hello - I'm New to this site and thought I was going Mad

Postby badnights » Sat Jan 05, 2013 11:07 pm

Ireitz
Perhaps print out the RLSF Medical Bulletin (2011 version), and highlight the parts about augmentation , and take it to your doctor.

Also print this post for him/her; here are some references to ferritin levels and worsened RLS/WED:
Frauscher et al., 2009. The severity range of restless legs syndrome (RLS) and augmentation in a prospective patient cohort: Association with ferritin levels. Sleep Medicine v. 10, p. 611 wrote:
Patients with augmentation had significantly lower ferritin levels than patients without augmentation (55.8 ± 43.6 microg/l vs. 105.8 ± 89.3 microg/l; p = 0.018).
...
Our data show an inverse correlation between ferritin levels and RLS severity ranging from ancillary diagnosis of RLS to augmented RLS. Patients with ancillary diagnosis of RLS had the highest ferritin levels, whereas patients with augmented RLS had the lowest. Midbrain iron deficiency has been demonstrated in autopsy, imaging and cerebrospinal fluid studies in idiopathic RLS [23–28]. In recent genome-wide association studies, a common variant in an intron of BTBD9 on chromosome 6p21.2 was identified to be associated with RLS [29,30]. A 13% decrease of serum ferritin was reported per allele of this at-risk variant [30]. Moreover, a recent study showed that RLS patients with lower ferritin at baseline were at a higher risk of developing augmentation during the course of dopaminergic treatment [18].
...
Almost one-third of the whole patient cohort had ferritin values <50 microg/l possibly indicating a need for iron substitution [33,5]. Moreover, 10% showed pathologically decreased ferritin levels <20 microg/l. The high frequency of low ferritin levels in RLS underlines the need for iron status evaluation in all patients with RLS as recommended by IRLSSG diagnostic guidelines (6) and is in line with the genetic link between iron regulation and RLS (30). In one early study, ferrous sulphate improved RLS in patients with ferritin levels <45 microg/l by 33%, whereas patients with ferritin levels >45 microg/l showed only a minor improvement of 10% compared to baseline RLS symptom severity [33].
...
Systematic data on iron substitution in augmented RLS are, so far, missing. Concerning the practical management of RLS, iron substitution should be considered before the initiation of RLS specific treatment in case of low ferritin levels below 45-50 microg/l [5,36] since a ferritin level <45 microg/l has been shown to detect 90% of patients with absent iron in bone marrow [37].
...
There was an inverse correlation between RLS severity and ferritin levels. Patients with current augmentation had the lowest ferritin levels. Our data further strengthen a putative role of low iron stores as a potential aggravator of idiopathic RLS.


There is also Dr B's recommendation, that pre-dates the above paper, from his book with Hening and Lee:
Hening, Buchfuhrer and Lee, 2008 (Clinical Management of Restless Legs Syndrome, p.199) wrote:RLS patients should have their serum ferritin level determined even when their hemoglobin and serum iron levels are normal. The serum ferritin level is the most accurate and sensitive test (other than a bone marrow evaluation) to determine whether iron stores are low. Serum ferritin levels <50 ug/mL (despite lab-reported normal levels of >10-20 ug/mL) have been associated with an increased severity of RLS, and treating these patients with supplemental iron may help their RLS.


There is also this information on the prevalence of augmentation when taking a dopamine agonist for RLS/WED:
Allen et al., 2011. Restless legs syndrome (RLS) augmentation associated with dopamine agonist and levodopa usage in a community sample. Sleep Medicine v. 12 p. 431 wrote:As currently used, long term dopaminergic treatment for an average ñ SD of 2.7 ñ 2.4 years produced significant augmentation problems in at least 20% of the patients and only 25% of the patients were totally free of this problem. It is important for physicians to carefully screen patients for changes in RLS symptoms for as long as they are on dopamine agents, with particular attention paid to those patients who present with the most severe RLS symptoms prior to treatment initiation. Given the marked increase in suffering with augmentation, a method for early detection and intervention would be an important contribution to the effective management and treatment of RLS.
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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