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02-22-2013, 12:36 PM | #1 | |||
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"Thanks for this!" says: | mrsD (02-22-2013) |
02-22-2013, 06:05 PM | #2 | |||
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In Remembrance
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There is more beneath this rock than I expected. One of the things that prompted my question is the upcoming appointments that I have with my GP as well as my neuro. I have resolved that it is past time to demand some answers to my questions.
One of those questions is "Why is there such an extreme swing in my BP on a typical day?" It has not been unusual to have periods when a typical day will be around 140/100 in the morning and bup to 200/120 in the afternoon! I have journal entries going back over six years of daily "spells" of this! Combined with cognitive features of tunnel vision as though back in a cave plus abrupt episodes of insane urination due to an osmatic response, even I can only repeat "PD" for so long. I may well have it, but there is more there as well. And I suspect that Laura has it too. We have danced around with what we are calling paralytic paralysis, but is that simply the best name we could come up with? MrsD, in light of your info on bradykennin, what do you think could account for the following experience which I noted two years ago and which had been going on for at least three years earlier and which eased with the introduction of beta blockers?: 9/20/11 CURRENT SYMPTOMS AND DESCRIPTION OF “ATTACKS” Nocturia – up approx five times, two hour intervals, one liter/night Sporadic anxiety/panic awakens 3:00 AM or so, 3 to 4 times per month In better condition at 3:00 AM than at 6:00 AM Cramping of left calf and leg upon first awakening. Lasts 30 min Poor tolerance of cold and heat. The former is recent. Formerly had very high cold tolerance. Effects of medications are very unstable now. This is recent. I must eat very sparingly to avoid triggering an “attack” thirty minutes later. These attacks last two to four hours and have the following characteristics- They come on with a “warning” period of five to fifteen minutes duration. Parkinson’s medications have zero effect on either preventing or shortening them. Initial sign is cognitive and is a sense of withdrawal. Extreme weakness, especially of legs, is initial physical symptom. Weakness progresses until, at fifteen minutes, it is for all intents and purposes, a state of paralysis. Cannot stand or even type. Muscle tone is zero (just the opposite of PD rigidity). Experience has shown that adrenaline worsens it substantially. At midpoint (one to two hours), blood pressure has reached as high as 250/200. (Note: It is very difficult to self-test during an attack). At this stage control of bladder is lost and a large amount of urine passes over a thirty minute period. Recovery begins. Muscle tone remains low unless attempt is made to force use. In that case, rigidity returns. Course is not affected by skipping medications nor by taking extra. Predictability. =============================
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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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02-22-2013, 07:00 PM | #3 | |||
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Wisest Elder Ever
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Oh, gosh....
I can only comment on two of your list. 1) nocturia comes when you have high blood pressure because during the day when you are about...the kidneys shut off. When you lie down, then the kidneys start working again, and make lots of urine. Also impaired glucose tolerance may be a factor as well. If you lie down at 2pm, do you urinate right after that? If so, that would be a clue. 2) High pressures as you describe really are dangerous, and are one sign of pheochromatosis. This is a tumor in the body that secrets epinephrine, usually after a stimulus of some kind. The only treatment is to have it surgically removed. There can also be disorders of the carotid bodies in the carotid arteries that control blood pressure. But I don't know much detail about them. There are people with autonomic neuropathies. This may affect blood pressure and/or the heart. There are various tests for this and it is usually an autoimmune disease, or diabetes that causes it.
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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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02-22-2013, 11:02 PM | #4 | |||
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In Remembrance
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Thanks MrsD-
You have given me more info in those few paragraphs than my cocky small town medicos have in twelve years. It is long past time that PWP insisted on a team approach to their treatment and egos be damned. Tonight I am at 160/106 and a pulse of 74. I have ridden a roller coaster for the last dozen years with these insane values and alive only because (according to my GP) since my circulatory system was getting a constant stretching. I don't know if it adds to the data or not, but the highest BP comes just before the sinemet kicks in (i.e. I turn on). Once that occurs the BP drops over about five minutes back to a normal value of 125/85 or so. I had assumed that the spike resulted from the maximized rigidity of the muscles compressing the vascular system. Now I have doubts. I am wondering now just how much of this is PD and how much is something else. Is there a part of the pattern that could flag the approach of PD, for example? Does the senior vs young onset show up here? And why do I get stable 120/80 or even less when taking turmeric? Enough so that my GP was concerned that even though it was a textbook value, that the pulse dropping below 60 would cause problems of its own. So the tumor issue might require surgery but the fact that a minimum dozen years have passed indicates a benign nature if present. So, how many of you out there really have PD and how many just thought they did. And if I end up cured how in the hell am I going to find a job in this darned economy?? Quote:
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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: | Drevy (02-23-2013) |
02-23-2013, 09:10 AM | #5 | |||
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In Remembrance
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During the night, it occured to me that none of the possibilities mentioned thus far would account for an unusual magnesium reaction.
However, I must admit that yesterday was a pretty good one vis-a-vis symptoms. Is there a possible reaction of "magnesium relief" in which some part of me needed the Mg so badly that it temporarily disturbed the equilibrium? After all, after two hours or so I was pretty much at baseline. -Rick
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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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