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chisue

Any New Help for Restless Leg Syndrome?

5 years ago

My search turned up nothing since 2018, where some people were helped by early meds for Parkinson's (Levodopa?). Posts said it was becoming difficult to find because there were newer, bettter meds for Parkinson's.


Google landed me with a very long commercial spiel for something called Seratame (brand name). It's a supplemental (thus unregulated) containing Lactobacillus Plantaarum #299, Magnesium Malate, Turmeric, and D3 + K2. The manufacturer says all this is necessary to get adequate Iron INTO the brain. (Having adequate iron in blood serum means nothing, according to her.)


DH has had RL all his life, but only at night over the past few years. (He is 82.) It disappeared while he was treated for anxiety with a combination of Duloxetine 20 MG and Aripiprizole 1MG.


Today, Aripiprizole is linked to diskinesia (involuntary movement) of jaw, hands, feet similar to having Tourette's. A new doctor eliminated DH's Aripiprizole and upped the Duloxetine to 30 MG. By his third night off the Aripiprizole, RLS reappeared and has continued nightly. This has happened in three previous attempts to get off the Aripiprozole. The previous MD had indicated that the sole reason for the Duloxetine was because it supported the use of the Aripiprizole.


Now we have two questions: 1) What will relieve the RLS? 2) Does DH really need *any* Duloxetine, let alone *more*? (Duloxetine is an anti-anxiety med; there are many others.)


Has anyone had any help with RLS by consulting a neurologist?


BTW: The 'soap cure' for RLS has been tried without success.


I have a bottle of Tonic Water in the fridge; someone said to try 8 oz. at bedtime. (I know quinine has been prescribed to help with leg cramps, so we'll try this.)



Comments (34)

  • 5 years ago

    I started the Keto diet . Cutting out all the sugar helped immensely both with leg cramps and joint aches and I discovered over Christmas when I overindulged in sugar that the leg cramps came back . I use magnesium citrate and zinc (zinc helps with absorption of magnesium). I had stopped taking them before discovering the link between the sugar and the leg cramps

    I now continue to take magnesium because magnesium offers much more than relief for restless leg syndrome and leg cramps . Our food stocks don't have the amount of magnesium they used to have because the ground is depleted of magnesium stores and so I supplement .

  • 5 years ago

    Leg cramps and restless legs are not the same thing.

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  • 5 years ago

    Pramipexole is a dopamine agonist that works on the nervous system to help treat the symptoms of Parkinson disease. Pramipexole
    is also used to treat Restless Legs Syndrome (RLS). RLS is a neurologic
    disorder that affects sensation and movement in the legs and causes the
    legs to feel uncomfortable.


  • 5 years ago

    I have had good results taking magnesium before bed.

  • 5 years ago

    Your husband needs to talk to his new doctor. It is highly dangerous to seek some type of cure before doing this. What he is taking has many drug interactions which would include OTC stuff. The doctor might try other things including renewing the old medication.

  • 5 years ago

    Hyland's Restful Legs is an OTC tablet that works well for me. I dissolve 2 or 3 of the tablets under my tongue at the first sign of discomfort, and I'm good for the rest of the night.

    Rusty

  • 5 years ago
  • 5 years ago

    I use Peppermint oil and rub it on the backs of my legs when needed. It has been working for me. It comes in a small bottle with a roller on top. I order from Amazon, but a friend said she buys it at Walmart, near the pharmacy.

  • 5 years ago

    Hyland's is a homeopathic "treatment" and has no active ingredients in it. Basically a placebo. https://www.statnews.com/2016/02/26/reject-pseudoscience-homeopathy/

  • 5 years ago
    last modified: 5 years ago

    I can't contribute "new help" but I have Restless Leg Syndrome that manifests when I sleep. For me it has been completely controlled for over 20 years (like flipping off a light switch) by my taking Neurontin at bedtime. And only at bedtime. The generic gabapentin doesn't work for me at all. I've never had any side effects from it and I wake up alert.

    If I forget to take it (which happens only very rarely), leg twitches will awaken me about once an hour through the night. When I take Neurontin, that never happens.

    There are a lot of causes of leg cramps - inadequate exercise being one for some people. That's always an easy thing to try and walking is a good thing to do anyway.

  • 5 years ago

    Of course, DH *is* talking to his MD about this, but so far the man is unfamiliar with this case. It's helpful to learn what has/has not helped others. Even a placebo evidently works for some folks. I know this doctor believes that DH's silly single miligram of Abilify has been placebo effect.

    Elmer -- I'm leary about gabapentin in general, having had bad side effects when I tried it briefly. I'm also unhappy with it being addictive. We can ask the doctor about Neuronin though. (Glad to know it's worked well for you!)

  • 5 years ago

    I would get RLS when pregnant. Resolve postpartum. Then again when I was overmedicated with anti-thyroid medication causing a slight case of hypothyroidism. Not enough to cause my thyroid tests to show out of range/abnormal, but enough for my body to sense a disturbance, resulting in RLS. Once thyroid levels were set back to my body's definition of normal, RLS was rectified and all was well again. It's since become one of my red flags that I need to go get a blood test to see how I need to adjust thyroid medication. Same for a friend who is on replacement thyroid meds. Now that we both need replacement thyroid, like I said, it's one of our red flags that a thyroid dose needs adjusting. Everything else can seem normal, but if RLS rears it's ugly head, we head over to the lab and there it is on paper. Mentioning only because many doctors don't seem to be aware of this in some people and put them on meds for RLS when in some cases a tweak in thyroid dosing is needed instead. My friend went initially with the RLS medication route with no relief. She suffered greatly for a couple of years as RLS affected her sleep, and ultimately every aspect of her life. Knock wood, we are both free of this as long as we stay on top of things of course. ymmv

  • 5 years ago

    SEA SEA, interesting. I’m on thyroid replacement therapy (Hashimoto’s).

  • 5 years ago

    While I agree Keto may help, keto also causes serious painful leg cramps, or 'charley horses'. For that I have a jar of dill pickle juice in my fridge so when I get a leg cramp, I hobble over to the fridge and pour a shot (1oz or so) of pickle juice and swallow it quickly. Within less than a minute the muscles in my legs relax and I'm fine. Also, follow it with some water. They say dehydration can cause those cramps but I found no matter how much water I drank I still got them. The pickle juice helped. Not sure if it'll work by itself for RLS though but can't hurt to try.

  • 5 years ago

    Debby, I can't imagine it likely that chemicals swallowed (and it's mostly salt in pickle juice) can be absorbed, passed into the blood stream and circulated to your legs in the time period you suggest. Maybe the physician who happens by here from time to time may know but maybe not.

  • 5 years ago

    Hubby has had it for many years. I was ready for twin beds! Various meds tried until he saw a Neurologist who prescribed Pramipexole. Works very well. But must take it about an hour before bed.


    Works like a charm. Restless legs not only disturbs the partner in bed, it disrupts sleep in the individual causing lack of REM sleep and leaves them tired during the day.


    Jane


  • 5 years ago

    I used to get RLS when sat too long or was especially sedentary, like sitting at the computer all day. Now that I am more active than ever with increased riding time I have exchanged restless legs for foot and leg cramps. I find I need to really hydrate on those days. It doesn't allow me to avoid the cramps entirely but does minimize them. If I know I've put my muscles under stress I take a single aspirin at bedtime or if I really put my body through he// some Ibuprofen.. Don't know if it's placebo effect of not but it seems to help. I do know there are a lot of pain meds that can make it worse but haven't seen aspirin or Ibuprofen on the list.


  • 5 years ago
    last modified: 5 years ago

    Mustard works for me, within seconds, and I keep a supply on hand. When I first heard about it some years ago, when I ran out of mustard I tried pickle juice which worked. I now seldom get leg cramps but used to much more frequently and with scream-worthy intensity, Mustard, and gone. I've told many clients about this over the years,and all but one found near instant relief as well.

    As far as RLS, I wholeheartedly agree with signet regarding sugar. I've notice a definite correlation over the years. Recently I've been off sugar (not keto) for 3 weeks and have had no episodes. When I do, tonic water almost always completely resolves the problem quickly. Good luck!

  • 5 years ago

    Oh Elmer why do you always have to argue or question what people know works for them personally? I know what works for me. The pickle juice with a glass of water almost instantly relieves muscle cramping. Maybe before questioning what I know, you might want to try it for yourself. If it doesn't work for you, that's fine. Just like a Tylenol doesn't work on my husbands headaches, but may work on yours EVERYBODY IS DIFFERENT and you have to try things until you find what works for you.

  • 5 years ago

    Elmer, pickle juice or mustard absolutely stops sudden leg cramps at night--my mother attested to that, over and over. Pretty much like magic. I cannot remember the reason for this--maybe you can look it up.


    Leg cramps and RLS are two completely different animals. My mother also dealt with that over the last several decades of her life and had to be heavily medicated to keep her legs still, towards the end of her life. She was given the Parkinson's drugs in the beginning (80s,) but the reason they're not available for this purpose anymore is because of the rebound effect--it's bad.

    I am fascinated in reading SEA SEA's post; Mom was taking thyroid meds.


    I occasionally feel some rls going on if I've sat too long in the evening, and feel strongly that it has something to do with my back--I've had pain issues for most of my life. I am able to shake it by walking around, so maybe it isn't true rls. I believe the researchers are still focused on not enough uptake of iron into the brain. I tried pushing my sister, with whom Mom lived the last four years of her life, into pursuing the idea of getting more usable iron into her. Sister had too much else going on and didn't follow up.


    I cannot tell you how hard this condition is! Mom blew through many kinds of pain-killers (narcotics,) rls drugs and nerve-blocking drugs, to no avail after a time. Who knew my sweet little mother, who could barely finish half a glass of wine, would basically become a drug addict? And no, the neurologist did a big fat nothing for her.


    I just remembered, there are drugs that make the symptoms worse---Benadryl comes to mind. That was a big no-no!


    Chisue, do you know of this organization? https://www.rls.org/about-us

    I admit I didn't read all the posts so apologies if I'm repeating suggestions. I sure do wish you success if finding something that helps your dh.

  • 5 years ago
    last modified: 5 years ago

    There are some home-spun and anecdotal practices that have demonstrable effects. There are other anecdotal or unfounded ones that millions "believe in". Just as a for instance, most of the unregulated supplement market is based on unfounded innuendo and lots of "may" do this or that. But most of such home remedies and practices are untested and ineffective other than with a placebo effect. A form of faith healing, which I also don't accept as being reasonable.

    I accept demonstrated/tested results but not suggestions based on beliefs and practices. "Proof" such as laceyvail cited from a non-credible source doesn't do much for me.

  • 5 years ago

    My husband was on Neurontin/ gabapentin for a time. One of the side effects of gabapentin is feelings of hostility. I can testify to that fact. His personality totally changed.

    ??? I researched and found the explanation: His Neurontin RX. Quite soon after stopping the med, he returned to be his usual self, minus the hostility & argumentativeness. Now, he takes it only an occasional as really, really needed basis. Of course, there was nada a word from his neurologist warning about this potential side effect & never an inquiry when the RX needed to be renewed.

  • 5 years ago

    I had a terrific problem with charleyhorses while I was on hormone replacement for menopause - that stopped when I stopped the HRT.

    I also have had problems with RLS - one summer it was so bad that I couldn't sit through a class! It felt like I had mice running around inside my legs! I found that taking magnesium plus potassium did take care of it - and I also finally figured out that it would flare up when I had been training hard, and perspiring a lot, even though I drank water generously. Now if I feel that my legs are the least bit twitchy (happens sometimes although rarely, even if I haven't been training) I go ahead and take a magnesium tablet along with a potassium. (caveat: I have no issues with kidney function). I also make sure that I am getting enough calcium and protein in my diet.

  • 5 years ago

    Elmer, and others, another group who uses pickle juice for hydration and muscle cramps is ultra runners. In fact there are often aid stations offering pickle juice during ultra runs. While I cannot personally verify that it works since I don’t run long distance anymore, I can verify that many of my running friends use it and proclaim it works.

    It is definitely not a substitute for maintaining hydration before and during a run, and I am not advocating it as an only source by any means, but as a secondary, interim source or after a run it seems to work for many. As for RLS, I don’t think there is any correlation at all, just wanted to make this comment here.

  • 5 years ago

    I know two ultra-endurance athletes but of the bike riding kind. The kind who will race for hundreds of miles or a hundred miles and thousands and thousands of feet of mountain climbs in one day. You don't want to know their superstitions, idiosyncrasies and practices about what they ingest and when. Believe me. From what I've heard, I'd suggest they get by despite what they do, not because of it.

  • 5 years ago

    Pickle juice contains a lot of salt & some potassium, both electrolytes. So it makes sense that distance runners might use it to replenish electrolytes.

  • 5 years ago

    Laceyvail's response is intriguing: the acetic acid in pickle juice is ‘noxious tasting’ and proposed to
    chemically stimulate a reflex in the back of the throat. This reflex has
    been shown to decrease activity in the alpha motor neurons which causes
    muscle relaxation. You don’t even have to swallow the pickle juice to
    trigger the reflex, which can relieve cramps in less than 3-4 minutes."

  • 5 years ago

    Thanks to all for sharing your experiences with this.

    sjerin -- Thanks for the link. Looks like RLS is in the same category as tinnitus -- just waiting for someone to make a fortune selling a cure to a widespread problem.

    DH has an appointment with a neurologist next week. Why am I pessimistic?

  • 5 years ago

    My leg and foot cramps release within minutes of walking about. The tough part is getting out of bed and standing up. Maybe it is the trip down the hall to get to the remedy rather than the remedy itself.


  • 5 years ago

    Fudd the way it works has been confirmed repeatedly, that's why I just showed one source and suggested you google it yourself. The People's Pharmacy had a doctor on a few years ago who explained the mechanism. It doesn't involve going through the stomach. In fact, the vinegar doesn't even need to be swallowed. Just held in the mouth.

  • 5 years ago

    From People's Pharmacy:


    Researchers have established that pickle juice promptly eases electrically induced muscle cramps (Medicine and Science in Sports and Exercise, May 2010). They also have demonstrated that the mechanism of action of pickle juice or mustard is not through electrolyte replenishment (Journal of Athletic Training, May-June 2014).

    Nobel Prize winner Rod MacKinnon, M.D., and his colleague Bruce Bean, Ph.D., are neurobiologists. They also are prone to muscle cramps. While kayaking several miles off Cape Cod, Dr. MacKinnon suffered debilitating cramps, which was dangerous that far out in the ocean. Fortunately, they made it back to land, and they began a quest to better understand the causes of such incapacitating cramps.

    By thinking creatively, they discovered that muscle cramps are actually triggered by misfiring nerves rather than dehydration or electrolyte imbalances. These brilliant scientists came up with a revolutionary idea that might transform the treatment of muscle cramps.

    They hypothesized that strong flavors would trigger nerves in the mouth, throat and stomach. This neuronal stimulation might in turn overwhelm the misbehaving nerves that were causing muscle cramps. They concocted a spicy beverage containing cinnamon, ginger and a hot-pepper extract that “directly influence and regulate nerve function.” They call the product Hotshot (www.Flex-Pharma.com).

    We suspect that yellow mustard or pickle juice also may work by stimulating the same nerves. Visitors to our website report fast relief from such remedies that cannot otherwise be explained by the slow absorption of sodium in the case of pickle juice or turmeric in the case of yellow mustard.

    Perhaps it’s time for skeptics to recognize that just because a remedy may seem strange doesn’t mean it should be rejected.

  • 5 years ago

    I want to add that docs seem to love to prescribe gabapentin, unless things have changed. It affected my mother badly as it seems to have an effect on the brain. I'd warn you off of it, but then I'm not a doctor. /s