Help Please

For everything and anything else not covered in the other RLS/WED sections.
MariS
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Location: Pacific Northwest, USA

Help Please

Postby MariS » Sat Jun 03, 2017 8:23 pm

I was diagnosed with RLS in 1992 after years of symptoms and PLMD in 2013. Polysomnography done 2013. Gabapentin, Klonopin, Depakote no longer help. I'm allergic to dopamine agonists. Last week started Lyrica 75 mg in AM, 200 mg in PM. Symtoms nightly and often daily have worsened to severe jerking/kicking/twisting of all limbs, fingers, torso, neck,waist, tingling in limbs, face, neck, throat. Tight feeling in throat and chest. I've had a new neuro for 8 months due to long distance move and he's stumped. He started me on the Lyrica. I have an appt in August with a big neuro center so am hopeful of something that helps. My question:

Does anyone else battle the symptoms I listed? I'm worried something more might be going on but present neuro is of no help.

Any thoughts on other meds that might help?

Any thoughts on Horizant? I haven't tried that.

stjohnh
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Re: Help Please

Postby stjohnh » Sat Jun 03, 2017 9:46 pm

MariS, Welcome. You will get lots of support and good advice here.

Sounds to me like you are on the right track with an appointment at a neurology group.
Horizant is similar to lyrica and gabapentin, likely won't work for you (and is very expensive). Might be worth a try if your doc has some samples. But realistically it sounds like you need opiods, methadone is the most commonly used and inexpensive, more hoops to jump through though. If your neurologist is truly "stumped" you probably should consider another doc, since opiods have been known to work for many years and your neurologist should know this.

Your symptoms are not typical of most RLS and if possible you probably should see an RLS specialist. The RLS Foundation lists RLS centers of excellence. If that is not possible a neurologist that specializes in movement disorders is next best.

Maybe your current neurologist would give you a short term rx for an opioid until August.
Blessings,
Holland

Polar Bear
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Re: Help Please

Postby Polar Bear » Sun Jun 04, 2017 12:53 pm

MariS - your symptoms sound very extreme and difficult.

If your doctor is stumped then he either needs help, or as stjohnh says, you need to move on.

Have you had your ferritin serum level checked, this is pretty important. It is a blood test that is not normally done with routine blood works and you need to ask for it. This tells the level of iron stored in your brain – and that is what is important to us sufferers of WED/RLS. We need a level of around 100 and many sufferers need it much higher than this. When getting the results of this test please ask your doctor for the actual level = do not accept ‘normal’ as an answer. Doctors and Labs may consider 20 to be normal… but it isn’t normal for us... nowhere near.

Have you ever heard of this book: it is wonderful, it is easy to read and can be used for discussion purposes with your doctor.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Make sure to get the second edition. These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon. It may be helpful to your doctor, but also, it means you are in an informed position when discussing with your doctor, or indeed a new doctor.

stjohnh has mentioned that perhaps your current neurologist would give you a short term prescription for an opioid until your appointment in August. The information in the book talks about the benefits of opioids for relief of symptoms and may be helpful to show to your doctor.
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: Help Please

Postby ViewsAskew » Mon Jun 05, 2017 3:55 am

Interesting that valproic acid (Depakote brand name in US) worked for you. We do not get too many people who have used it. So sorry it and the other drugs no longer do work and that you cannot take any of the DAs.

As already noted, definitely a more difficult to treat case. Many of us here have severe symptoms, but it the presentation is often unique for those of us in the severe category, so we cannot often do things that others do. A lot of us are on some very individualized treatments! That said, you have symptoms that push the boundaries of what most of us have. It is possible there are two things going on and you would need a very good doc to tease that apart.

Definitely see about the ferritin.
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.

MariS
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Joined: Sat Apr 25, 2015 1:30 am
Location: Pacific Northwest, USA

Re: Help Please

Postby MariS » Mon Jun 05, 2017 6:27 pm

Thank you all for the excellent recommendations. I do monitor my iron levels and also take 65 mg iron with 1,000 mg vit C on an empty stomach daily. Last month my ferritin level was 82 ng/mL, so is low. My PCP is not familiar with RLS so when she told me my ferritin level was normal I had to educate her. Foruntuately she is willing to educate herself and has since emailed me with suggestions. I'm not near one of the RLS Centers although Stanford is not a great distance. Unfortunately I'm my husbands caregiver, he is an incomplete quadriplegic and travel is impossible. I have no one to care for him. However, his neurology medical group is outstanding and I have an appt in Aug with one of the neuros who specializes in RLS. Her bio reads: "Sara Batya, MD, is a board certified neurologist with fellowship training in movement disorders, which include ...... and Restless Leg Syndrome. She is a specialist in the management of deep brain stimulation and the non-surgical care of the complex and multifaceted aspects of these diseases." Knowing the level of medical training, competence and care the doctors at Oregon Neurology at Riverbend Hospital I'm hopeful she will figure out what is going on with me and the best course of treatment.

I have felt for some time that I have something more than RLS going on but my last 2 neuros have only come up with PLMD which does not remotely discribe what I have going on.

Betty, I purchased the book from Amazon and it arrives in 2 days. I look forward to reading it and sharing it with my PCP. I will also take it to the appt with my new neuro.

What do opiods do for RLS??? What are the chances of becoming addicted? Opiods sound pretty scary and I don't understand how they work re RLS. I always think of them as pain killers. I'm not in pain. I will do some research at https://www.ncbi.nlm.nih.gov/pubmed/15580610 and http://www.hopkinsmedicine.org/neurolog ... tment.html but if anyone here wants to comment I'd appreciate it.

Rustsmith
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Re: Help Please

Postby Rustsmith » Mon Jun 05, 2017 8:59 pm

MariS, the medical definition of pain is an unpleasant sensation that can range from mild to agony. I have also seen it defined as an inappropriate nervous response, so by those definitions, the RLS need to move constitutes "pain".

As for how opioids work, that is something that isn't really known. What is known is that opioids were the first medicines used to treat RLS, long before the invention of the dopamine agonists or the alpha-2-delta meds.

As for what do they do, I can only say that in my case they eliminate the sensations that force me to move around. I take the smallest dose of methadone that is sold and have been taking it for over 15 months. It works as well today as it did the first time that I took it, which isn't something that I can say about either of the dopamine agonists that I augmented on (one in 12 months and the other in 15). As for addition, there are only a couple of studies so far, but they indicate that we are far less likely to experience "addiction" than others. Maybe because our bodies actually need the medication for something other than what is commonly thought of as pain. There are members of this board who have taken opioids for many years with no increases in dose. For me, the only drawback of taking methadone are the multitude of hoops that I have to jump through to get my prescriptions. My doctor is great in this respect, but every other step is difficult.

Remember that "addiction" and "dependence" are not the same thing. Addiction is where you are driven to get more of the medication and will do anything to get it. Dependence means that you need the medication, but are willing to suffer the symptoms if it is not available. Those of us who take opioids for RLS are dependent upon them, but are usually not addicted.

Finally, take a look at this webinar on the use of opioids to treat RLS. https://www.youtube.com/watch?v=iCNI_UCj7SI It is given by Dr Earley at Johns Hopkins and he is one of the leading authorities on the treatment of RLS. It will not only help to answer many questions that you probably have, but also allay your fears.
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: Help Please

Postby Polar Bear » Mon Jun 05, 2017 10:34 pm

MariS - please do watch Dr Earley's webinar link, it is very informative and reassuring.
I remember watching it while doing my ironing .... ...
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

leggo_my_legs
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Re: Help Please

Postby leggo_my_legs » Tue Jun 06, 2017 3:45 am

MariS,

I sure hope you can get some help and feel better soon.

Another sign of addiction is if someone finds themselves taking the medication for emotional reasons, or for other reasons than it was prescribed. The phenomenon of craving starts to develop, which causes the person to want more and more of it. This desire and drug use starts to interfere with their daily life.

Tolerance may also develop, which is a physical phenomenon where someone needs more of the drug to produce the same effect. However, tolerance can exist independent of addiction, so if one is tolerant, one is not necessarily addicted unless other symptoms are present.

In broad terms, addiction is something that tends to make one's life worse, at least after awhile. It starts causing all kinds of problems--relationship, work, legal, etc. In contrast, taking medication as prescribed hopefully makes life better.

legsbestill
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Location: Dublin Ireland

Re: Help Please

Postby legsbestill » Wed Jun 07, 2017 2:53 pm

Hi MariS,
Your situation sounds very difficult and I really feel for you. I would agree with the other observations (and your own) that not all your symptoms are typical of RLS although it can be an idiosyncratic condition and maybe just affecting you slightly differently. In this regard it would be useful to observe whether your symptoms responded to an opiate. You would know this almost immediately - opiates settle the symptoms very quickly - so it might be worth at least trying an opiate. If your symptoms don't respond, it is less likely that they (or some of them) are RLS. I hope you find something that affords you with some much needed relief - and soon.

badnights
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Re: Help Please

Postby badnights » Thu Jun 08, 2017 8:41 am

Hi MariS

It sounds like you're having a really tough time. Your symptoms sound atypical. When you say jerking/kicking/twisting, are those involuntary movements, or are they impossible to avoid but voluntary? It can be easy to confuse the two, but if you can hold off moving for a time, then the movements are likely voluntary. Do you feel an urge to move that is un-ignorable? WED/RLS movements are voluntary. A lot of WED/RLS patients also suffer from periodic limb movements, which are involuntary, regularly repetitive bendings and straightenings, as in a kick; but not twisting. Most PLMs happen at night, but some people get them in the daytime too.

When you say tingling, do you mean the skin is tingling? (not RLS/WED.) Or are you using the word tingling in an effort to describe something deeper for which words are inadequate? (is RLS/WED.)

The bodily extent of your symptoms is unusual for RLS/WED but entirely possible.

Finally the tight feeling. That does not sound like WED/RLS, and suggests there is something else going on. It may or may not be important or even diagnosable.

Regarding opioids, it's probably best not to actually ask for them. Present your doctor with the information and ask what she thinks of it.

I am interested personally in that tight feeling. I had a problem with tightening in my throat for many years. I can't remember exactly when it started, but I think it preceded the WED/RLS, which is strange because almost all my other ailments within the year after my WED went crazy. The throat tightening still bothers me occasionally but not to the same degree, and again, I can't recall when it started to get better. It feels like the muscles around my larnyx can't relax, and it's very painful. It doesn't affect my breathing. Is your tight feeling anything like that?
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

MariS
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Joined: Sat Apr 25, 2015 1:30 am
Location: Pacific Northwest, USA

Re: Help Please

Postby MariS » Thu Jun 08, 2017 7:58 pm

Hi Beth,Thank you for your voluntary/involuntary movement decriptions. They help me clairify my various feelings of discomfort. I definitely have WED/RLS. I'm 70 yrs old and first noticed the creepy/crawlies in Jr. High but was not officially diagnosed until I was in my 40's. I was diagnosed with PLMD after a Polysomnography in 2013. The WED/RLS has worsened over the years which I think is typical. So has the PLMD, which at first was just occassionally at night. My neuro of 10+ years, who ordered the Polysomnography, called the daytime movement PLMD and it is the same movement that happens at night separate from the WED/RLS.

I moved to a new state last year and have had a new since neuro - he is no help at all. But I have an appt in Aug with an RLS doc in an excellent medical group that treats my hubby.

Added to my daytime WED/RLS and PLMD is the tightness in my throat and tingling along with a feeling of periodic muscle weakness in my legs.

Beth: It's the off and on muscle weakness in my legs and tightness in my throat that's most frightening as it's new, undiagnosed, and I haven't seen it described in this forum. The throat tightness does sound like what you experience. But, I did some google research today and both of these, the throat tightness and muscle weakness may be a side effect of my new high blood pressure meds of 3-4 wks (Losartan and HCTZ). I've emailed my primary doc (she's great) to ask about side effects.

This can be so overwhelming!!! Added to all this, I'm primary care giver for my hubby, an incomplete quad as of last Oct from rare spinal cord stroke. I'm sure the tremendous stress on he and I hasn't helped my WED/RLS. Fortunately he is out of the woods and doing much better. But our whole world has changed.

I cannot thank you all for the ongoing support!!! I will keep posting, please post your thoughts back re WED/RLS, PLMD, meds etc. Your posts will be much appreciated.

badnights
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Re: Help Please

Postby badnights » Sun Jun 11, 2017 11:32 pm

It sounds like you've got a good handle on it all, at least in so far as being able to distinguish WED/RLS from PLMD and the new symptoms. If the new ones are side effects of the bp meds, that will be a relief I'm sure - better that than something else. Your GP may want you to switch meds to find out for sure. Wish I could say the same for my throat thing - it used to be that coffee caused it, even decaf, but not other hot liquids, and I found if I put milk in my coffee, it didn't happen as badly. I don't drink coffee very often anymore, because of the WED - so that tells me I did have the throat tightening long before the WED/RLS, I remember now - maybe that's why I don't get the tightening as often.

You've certainly had your world changed in the last while. My mother became my dad's caretaker after his stroke, and that was very stressful for her, even though he was able to learn how to walk and swallow again. I can imagine how hard, mentally and physically, it must be on you.
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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