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03-05-2010, 08:22 AM | #1 | |||
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In Remembrance
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Various discussions are in the archives on the difficulties of multitasking, freezing as sensory overload, etc. There has also been some very limited discussion of electrolytes. In particular, Stefi1 reported great results from a tonic that was essentilly an electrolyte mixture. This is all coming together for me. It may be limited to my own situation but I don't think so. This is going to be a bit long, but bear with me as it could be very important to you later if not now....
About two years ago during a physical, my GP discovered that my potassium levels were alarmingly low. He prescribed a generic supplement and things seemed fine. Since that time, however, there have been at least a dozen instances where I was just not responding to meds and found that additional potassium straightened things out quickly. In fact, on one occasion I could not even stand up. Two potassium capsules and I was back to normal in just three minutes! Starting from here, I have followed a trail that has led me to a condition called "hypokalemic periodic paralysis" and an associated phenomenon called "hypokalemic sensory overload". "Hypokalemic" means low potassium levels in your blood. Muscles and nerves are totally dependent on potassium levels and too low renders you helpless while too high stops your heart. HPP is generally considered to be of genetic origins but can arise from thyroid problems as well. There are uncomfortable hints that it can be a side effect of longterm levodopa use as well. Regardless of origin, it has a profile that strongly resonates with much of what has been posted here at various times. In a nutshell, this type of problem can lead to "attacks" where, in response to insulin, your cells suck the potassium out of your bloodstream and you go limp until the balance is restored. That can be a matter of minutes, hours, or days. At the other end of the spectrum, as the potassium is released it can result in high levels and muscles go stiff. Attacks can be random or predictable. Daily is not unusual. Diagnosis is tough because, unless drawn during an attack, blood levels will show normal. Attacks can be triggered by rest after exercise, high carbos, stress, salty foods, MSG, etc. They can be stopped by potassium supplementation, but only with a doctor's involvement since too much is dangerous. I am going to post some links and urge you to consider the possibility. http://en.wikipedia.org/wiki/Hypokal...odic_paralysis http://en.wikipedia.org/wiki/Hypokal...verstimulation http://www.translational-medicine.com/content/6/1/18 That last one is a full text paper by an MD who has the condition himself and who heads a national support org for it. We have talked about blood sugar problems, stress, freezing, and others aspects of our struggle. An awful lot of that makes sense in this context.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000. Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well. |
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03-05-2010, 08:33 AM | #2 | |||
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Wisest Elder Ever
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You might find this interesting:
http://barttersite.org/ Low levels of magnesium impact potassium utilization too. There are several explanatory articles on the Bartters' site to explain that too.
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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03-05-2010, 08:34 PM | #3 | |||
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Member aka Dianna Wood
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Are you talkin of a Mitchondrial disorder?
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03-06-2010, 10:49 AM | #4 | |||
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In Remembrance
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No, this is a problem with the tiny valves or gates that are built into the cell membrane and open and close to allow electrolytes to move in and out of the cell. Although primarily considered an inherited problem, there are many unknowns and I suspect involvement with PD is one of those. A lot of things are fitting together. In particular, the question of "off" periods when the meds quit working has never been explained. This may do so. In my case I suspect a scenario where glucose triggers insulin which triggers potassium to be moved from blood to muscles for a while causing weakness. Then as the attack resolves the potassium moves back triggering polyuria. Then I turn on. More later.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000. Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well. |
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"Thanks for this!" says: | vlhperry (03-08-2010) |
03-06-2010, 05:55 PM | #5 | |||
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Member
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Well at least we know what turns Rick on now.
GregD
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"You can't fight City Hall, but you can pee on the steps and run." --Gary North |
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03-06-2010, 06:50 PM | #6 | |||
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In Remembrance
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"The Truth? You couldn't handle the Truth." Of course, I can always blame the Requip.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000. Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well. |
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03-08-2010, 03:11 PM | #7 | |||
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Member aka Dianna Wood
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"Thanks for this!" says: | girija (03-08-2010) |
03-08-2010, 09:31 PM | #8 | |||
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Senior Member
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You just may be onto something here. When I had my experimental brain surgery, the first check-up revealed a really low potassium. I was taking K-phos for several weeks post-op. If I am not mistaken, most of the other participants also had a low poassium.
Do you think this was due to the surgery, or is it possible that it wasn't caught until the bloodwork was done for this trial? If this did pan out to be true, then maybe the improvement of the participants was due to the restored potassium. Nah - that would be too easy! Peg |
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03-09-2010, 04:59 AM | #9 | |||
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In Remembrance
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I'm still thinking on this, but it is a sort of game of hide-and-seek until a "trigger" is encountered.At that point, a metabolic shift results in the movement of potassium from the blood into the cells, similar to the way that insulin causes glucose to move around.
Between attacks, potassium levels test normal. Once triggered, levels plummet and then slowly recover over a course of minutes, hours, or days. In extreme cases, weakness is profound. Weak, not stiff. But this is just one of a dozen types. Had blood drawn yesterday for appointment tomorrow. I went off just as I checked in! Perfect. If this scenario is true, my potassium should show low.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000. Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well. |
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"Thanks for this!" says: | olsen (03-09-2010) |
03-09-2010, 01:46 PM | #10 | |||
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In Remembrance
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Not being one to wait for tomorrow's doctor visit, I am conducting a little ezperiment. About 45 minute ago I began to go off as I came home. I made it safely but by the time I arrived 30 min ago, it was a struggle to make it into the house. I made it to the kitchen, drew a glass of water, and spent a full five minutes struggling to walk the thirty feet to my chair, sloshing a good bit of the water out as I went. From experience, I expected to be immobile for from one to three hours.
Once in my chair and with some struggle, I measured out one-quarter teaspoon of a potassium chloride salt substitute I bought at the local supermart yesterday. Mixed it into the water and drank it down. Three minutes later I could tell that the tide was turning. At the ten minute mark I picked up my laptop and booted it up and began to type this. Normally I would be slumped here in inert misery. I feel great! Now don't rush out and try this at home yet. I was already pretty sure that I was hypokalemic (LOW potassium) but similar symptoms can come from being hyperkalemic (HIGH potassium) and in the latter case adding more can be dangerous. I will keep you informed as this rat moves forward. But to any of you who experience the regular misery of going off, this may be a boon. There are a dozen or so of these "ion channel disorders." Some involve potassium, others sodium or chloride or magnesium. The first one was discovered in 1989! That's right, twenty-five years ago no one knew that they even existed. The current thought is that they are of genetic origin. But I think that the possibility that they can arise from the progression of PD needs to be considered. I just got up and walked around. I am fully functional folks! Ooooo-Eeeee!
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000. Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well. |
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"Thanks for this!" says: | Aunt Bean (03-10-2010) |
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