Potassium! Potassium! Potassium!

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KarlGruber
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Joined: Fri Oct 07, 2016 6:44 pm
Location: St. Paul, Minnesota USA

Potassium! Potassium! Potassium!

Postby KarlGruber » Fri Oct 14, 2016 5:59 pm

Folks –

I don’t know if this will interest you, but I’m sharing because it might be helpful to someone:

1. My point: Upping my potassium intake has really helped my RLS.
2. Background Info:
    a. I’ve had RLS for more than 25 years.
    b. I suspect most people don’t get anywhere near their recommended daily value of potassium. (It’s very hard to do. For example, even eating 10 bananas a day – very high in potassium – wouldn’t get you there.)
    c. Multiple vitamins include very little potassium.
    d. Potassium supplements contain very little actual potassium.
    e. It would be extremely difficult to “overdose” on potassium, so, for example, increasing your potassium intake is safer than increasing your iron intake.
    f. It’s relatively cheap! All you have to do is buy – and eat – the right food.
3. What I did:
    a. Beginning about September 25 of this year, I began eating a lot of stuff high in potassium – bananas, yogurt, all-bran cereal, peanut butter, molasses, potatoes, broccoli, and spinach. I'd guess my consumption adds up to about 60 percent of the recommended daily value. I estimate I’d been getting in the range of five percent of the daily value before making this change to my diet.
    b. I continue to take my medication: pramipexole; 0.5mg a day at 4:00 p.m., 1.0mg a day at 8:00p.m.
4. What happened:
    a. The need to move my limbs has virtually disappeared! I’m not claiming to be cured, but I’m sleeping much better, and I haven’t had any “bad” nights (i.e., nights [not] sleeping in the guest bedroom because I can’t lie still). I still have periods when I feel like I need to move, but they’ve been infrequent and have about 10 percent the intensity of the urges to move that were occurring prior to undertaking this potassium regimen. In fact, they’ve been so minor, I find I’m forgetting to take my medication.
5. Disclaimers:
    a. I’m not a doctor.
    b. At this writing, I’m only about 20 days into this, so the party could still end at any time.
Thanks.

Karl
St. Paul, MN USA
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Rlstader
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Joined: Fri May 27, 2016 3:18 am

Re: Potassium! Potassium! Potassium!

Postby Rlstader » Fri Oct 14, 2016 6:47 pm

Thanks Karl. I will definitely give this a try and let you know.

badnights
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Re: Potassium! Potassium! Potassium!

Postby badnights » Sat Oct 15, 2016 8:52 am

Hey Karl, that;s really interesting. It seems that any deficiency can bring about WED/RLS in susceptible people, and fixing that deficiency can improve or eliminate it. What made you think of potassium??

Can you now lower your pramipexole dose? You should be able to, and any lowering is a good thing. Your current dose of 1.5 mg daily is kind of high for WED/RLS (though not for Parkinson's).

Have you had your ferritin level checked? If it's under 75, and you;re taking a dopaminergic medication like pramipexole, you are at increased risk of augmentation, however, lowering your dose and increasing your ferritin both decrease that risk.
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

KarlGruber
Posts: 6
Joined: Fri Oct 07, 2016 6:44 pm
Location: St. Paul, Minnesota USA

Re: Potassium! Potassium! Potassium!

Postby KarlGruber » Mon Oct 17, 2016 4:03 pm

badnights --

Thanks for your comments. I sort of backed in to the potassium idea. I saw some TV doctor say on a video that eating foods high in potassium can help RLS. My wife usually has bananas in the house (which I never ate), so I thought I'd try eating one a day.

As I looked more into it, I determined my daily intake of potassium was extremely low: As I mentioned in my post, my guess is I was getting about five percent of the recommended daily intake. (It's curious, though, that this never turned up on a blood test, but maybe they weren't looking.) So, I got on a mission to eat a diet that included much more potassium.

One thing I should clarify: I mention in my original post that "it's hard to 'overdose' on potassium." I believe that's true, but it is possible and hyperkalemia, as it's called, can be dangerous, so look into that if you decide to go down this potassium road.

As for reducing my dose of pramipexole, I'm going to give this another week or so and see how it goes. If it's still working, I'm going to drop the .5 MG at 4:00, then, if that goes well, maybe a week later, half of the 1.0 MG at 8:00, and finally, stop completely. It'll be mind-blowing if it works.

I can tell you as of now, though, the difference has been amazing. I lie in bed and can't believe I don't want to move. It's too soon to call, but, in the back of head, I'm wondering if I even have RLS. Maybe I just need more potassium!

Karl

P.S. Will take your advice on the ferritin check!
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KarlGruber
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Location: St. Paul, Minnesota USA

Re: Potassium! Potassium! Potassium!

Postby KarlGruber » Mon Oct 17, 2016 4:14 pm

Rlstader --

Great! Just an FYI: I'm getting a lot of potassium from a smoothie I make every night for dessert: I use a hand-held blender to mix together:

one banana
1 teaspoon dark molasses
1-1/2 Tablespoons peanut butter
about a cup of non-fat Greek yogurt
enough milk to get the thing to a drinkable consistency -- 1/2 to 3/4 cup

What you'll get will be somewhat sweet but not overly so, in my opinion. You can add other stuff to tweak the flavor (hot fudge, for example). You also could throw in some spinach, but that's not really my deal.

The one down-side of this concoction is that it's quite high in calories -- about 450 by my calculation.

As I told badnights: I mention in my original post that "it's hard to 'overdose' on potassium." I believe that's true, but it is possible, and hyperkalemia, as it's called, can be dangerous, so I'd make sure you understand what that's all about before you go down this potassium road.

Good luck!

Karl
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Rustsmith
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Re: Potassium! Potassium! Potassium!

Postby Rustsmith » Mon Oct 17, 2016 5:49 pm

My wife also has a potassium level that is low if she doesn't watch it. She has found that her hands and feet get cold for no reason if her potassium level drifts too low.

She manages her potassium by using what I call "fake salt". If you check the low or no sodium salt alternatives, you will find that many of them are potassium chloride. They taste strange to me, but she finds that they taste just like salt. I have a tendency to run low on sodium, so we keep two salt shakers on the table and she avoid salting anything while cooking. Once on the table, she reaches for her salt potassium shaker and I for the sodium one. We both salt to taste and manage to keep our respective sodium/potassium levels closer to normal.
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.

KarlGruber
Posts: 6
Joined: Fri Oct 07, 2016 6:44 pm
Location: St. Paul, Minnesota USA

Re: Potassium! Potassium! Potassium!

Postby KarlGruber » Tue Oct 18, 2016 4:50 pm

Steve --

This is very interesting, because I'm cold constantly! (As I like to say, "For me, 70­° and a breeze is chilly" or, for you Celsius folks, "For me, 21° and a breeze is chilly.") Another winter is looming, so it'll be interesting to see how my new potassium regimen affects this. Maybe I'll kill two birds with one stone!

Karl

P.S. If you've noticed I live in Minnesota and immediately wondered why the hootie I'm not living in a warmer climate, it's a "roots grow really deep" problem.
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badnights
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Re: Potassium! Potassium! Potassium!

Postby badnights » Sat Oct 22, 2016 10:55 am

I'm becoming more interested in this topic every time I return to it. Low potassium involved in cold hands and feet, which I always have? Interesting! I will see if it applies to me.

I imagine it would be hard to OD on potassium by eating whole foods like molasses and bananas. I eat a banana most days because it's a great post-workout or pre-workout food to throw in a smoothie. I have started adding a touch of molasses to smoothies and bars, previously only used fruit, but I ve been adding molasses for the micronutrients in general (Mg and B6 mainly) not potassium in particular. I'm not consistent with avocados, spinach and sweet potato but I could easily ensure I have one a day. I often thow pre-cooked sweet potato in a smoothie to get some starches after a workout.

I will see how consistent I can be and report back.
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

KarlGruber
Posts: 6
Joined: Fri Oct 07, 2016 6:44 pm
Location: St. Paul, Minnesota USA

Re: Potassium! Potassium! Potassium!

Postby KarlGruber » Mon Oct 24, 2016 5:24 pm

Folks --

I'm sorry to report I've hit a snag in the potassium regimen I was so excited about. I'm quite concerned about augmentation, so, on October 19 (five days ago), I stopped taking my .5mg dose of pramipexole (generic mirapex) at 4:00p.m., which left me taking only my 1.0mg dose at 8:00p.m. Well, I've just been through one of the worst weekends of my life. I probably got a total of eight hours of sleep over the three nights. I'm still doing the "higher" potassium diet I described earlier.

A few things come to mind:

    1. Skipping the afternoon dose of pramipexole amounts to a 33 percent reduction in the medication, so maybe that's too much too soon.
    2. I'm concluding I'm very dependent on pramipexole, which is tantamount to an addiction, which doesn't thrill me in the least.
    3. I'm doing this without having consulted a doctor beforehand, which is probably pretty stupid.
All of this said, I think I'm going to go back to my full dose -- at least until I can talk to a doctor about it.

Karl
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Rustsmith
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Re: Potassium! Potassium! Potassium!

Postby Rustsmith » Mon Oct 24, 2016 5:52 pm

KarlGruber, a total of 1.5mg/day of pramipexole is a LOT. The maximum dose for RLS recommended by most experts is between 0.25 and 0.5mg. Doses of up to 4mg are allowed for Parkinson's, but that is a completely different disease.

As for "addiction", that is when you would be willing steal from family to get your next dose. The term for what we experience with our meds is "dependence". We are dependent upon our dopamine agonist or other meds to maintain a somewhat reasonable quality of life.

For getting off of you pramipexole, there are two schools of thought among the experts. One school feels that you need to find out what your RLS baseline is and should therefore cut back to the 0.25 to 0.5mg range and then quit cold turkey. They admit that quitting cold turkey will result in absolutely zero sleep for up to five days followed by slowly increasing hours of sleep over the next two to four weeks. After that time, you will have an idea what your current baseline RLS symptoms are like. Few people actually manage to do this and they have my utmost respect for surviving the ordeal.

The other approach (which thankfully is the one that my own doctor took), is to provide you with an opiate and then decrease the pramipexole. The opiate covers the pramipexole withdrawal process. When I switched, I was taking between 0.75 and 1mg of pramipexole/day. On the first day on methadone, I cut my pramipexole to 0.25mg. I had been augmenting for about six months and within the first hour after taking the methadone it was like a weight was lifted off of my shoulders.

Of course, the problem these days if finding a doctor who 1) understands augmentation and how to treat it and more importantly 2) is willing to prescribe an opiate to cover the transition and 3) is willing to prescribe an opiate as a long term treatment if that is what is needed to treat your RLS after getting off of the pramipexole.
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.

badnights
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Re: Potassium! Potassium! Potassium!

Postby badnights » Tue Oct 25, 2016 9:41 am

Hi Karl

Bad news indeed. I feel rotten for you. I know what it's like.

I want to put your worries about addiction to rest. There are a number of things that can happen when we regularly take a medication. First off, hopefully it improves whatever it is meant to improve, it removes whatever bad symptoms it was intended to. Another thing is our bodies can develop a physical dependence on it, which only means that our systems adjust in expectation of its presence. We know we're dependent when we stop taking the medication, because then our systems have to adjust to its absence, and we feel off until they do. This is called withdrawal. Often our bodies "get used to" a medication so that it gradually becomes less effective in what it was meant to do, and we need to raise the dose from time to time in order to keep its effectiveness. Addiction is different from dependence and tolerance; addiction is when we crave the medication for its effect on our mood. Usually if addicted, a tolerance to the mood effect builds up and we need higher and higher doses of the medication over time in order to keep getting that effect, but taking higher doses don't mean you're addicted, it might just mean your body is tolerant to the effect the medication is meant to have. Getting withdrawal symptoms when you stop doesn't mean you're addicted either. Feeling like crap when you stop a medication because your symptoms have returned is also not a sign that you're addicted. The key thing with addiction is a craving for the medication to enhance mood.

Long way to say, you;re not addicted to the pramipexole. But because of the unique problems that dopamine agonists (DAs) cause for people with WED/RLS, I'm glad you're lowering your dose. The terrible symptoms you're experiencing are probably a form of withdrawal, which unfortunately is very common with the DAs for WED/RLS patients (Parkinson's patients don;t have these problems I dont think). You will have to go through that in order to get off the pramipexole; but merely lowering your dose might not be the best plan, because your symptoms probably won;t be covered even after the withdrawal is over.

Talking to a doctor is a bit of a crap shoot - is your doctor familiar with treating refractory WED/RLS? Has he ever checked your ferritin level? If not, he probably doesn't know how to treat you; if yes, you might have to dig a little more to find out if he knows enough to help you. Most doctors don't know how to help you get off a DA, and most don't realize there is such a thing as augmentation in RLS/WED nor how bad it is. I suspect your doctor is one of those merely from the high dose of pramipexole you're on (its not considered high for Parkinson't patients, but it is for WED?RLS - recommended max daily dose according to some specialists , as Steve said, is onlhy 0.25 mg.

The best approach for talking to a doctor is to print the WED Foundation's Medical Bulletin (available from http://rls.org/member-portal/publications - near the bottom, in the HEalthcare PRoviders section). Highlight the parts under Refractory RLS that apply to you, and take it to your doctor, describe what it happening, give him the printout opened to your highlights and tell him you got this from the RLS Foundation, would he mind taking a look at it and telling you what he thinks?

You can also email this wonderful WED specialist named Dr. Mark Buchfuhrer at somno@verizon.net, and give him a brief history then ask him how he would suggest getting off the pramipexole and what you could take instead. But check out his website first, where he posts all teh emails he has received and answered (Southern Californai RLS Support Group at http://www.rlshelp.org). You could print his answer and bring that to your doctor as well, but use your judgement whether or not to show it to him, he has no idea that Dr B is legit. It might help if you tell him Dr B was one of the authors of the Mayo Clinic protocol for treating RLS (link here)

You can also download a paper written by Dr B by following the link in my signature below, it leads you to a page of links, most meant to be used to educate one's doctor. Dr B is more outspoken in his opinions than the RLS Foundation;s bulletin,

Also you should be sure to get your ferritin checked, and start supplementing if your doctor sees no risk of iron overload, with iron pills likeBut ferrous sulfate (one or two pills a day containing 65 mg elemental iron each, taken with 200-500 mg vitamin C on an empty stomach, ideally)
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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