I'm always trying new ways of dealing with my health care. I'm intrigued by my latest experiment. In my two-year battle with my doctors over how to deal with the dangerous spikes I was getting in my blood pressure during my levodopa off periods, I took a lot of blood pressure readings on my home monitor. My doctors all wanted me to get back on one of the blood pressure meds but I was sure my problem wasn't hypertension but instead was triggered by levodopa issues. I was proved right.
But that's another story. The point here is that in the nearly two years that I was closely monitoring my bp I saw a definite linkage between the BP readings and the levodopa in my system – – low readings midway between pills, readings going up as we approached the time for a new pill, peaking at pill time, and going down as the new pill took effect. So I'm experimenting with keeping a log in which I note the BP readings around pill time. I also try to jot down a brief note about anything health related going on at the time. This note gives me a recorded health history that helps, given the terminal illness of my short-term memory. But the writing also provides additional information on how I'm doing with the levodopa. Cramped writing is probably the most reliable indicator I have that I'm in an off period.(Tremors are not part of my PD.)
I'm also beginning to find that this log is beginning to be useful in providing other health information. So far so good. For more details on this experiment, see bit.ly/1e4OUVh
But I wonder if this is just a unique happening with me or does the same link between blood pressure readings and levodopa exist for others with PD. I'd be delighted to learn of others'experiences here.
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gleeson
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Yes Gleeson, I have been aware of cardio vascular involvement in my PD for the past 18 months or more. My BP can fluctuate markedly during the day but I have been more concerned about my heart rate which can increase with the slightest activity. It's disappointing your neuro didn't make the link as I think autonomic problems have been discussed for a while but I think mine would downplay it too. Thankfully you keep self monitoring.
Thanks Hikoi! The links are very helpful. I don't have orthostatic hypotension but I do experience bp changes that used to go below 100 and over 200 at times. But now that I've switched to levodopa extended release and am monitoring my bp, the lows and highs are acceptable.
My BP isn't so extreme in its fluctuations and I don't have noticeable OH but as I said my pulse can go from 70 to 120 just walking a short distance. I'm not sure if it is connected to drug timing but being or feeling short of breathe is very noticeable when I am off.
Not only have I considered Isradipine, it is probably what kept me from caving in to my doctors who were telling me, in effect, stop this nonsense of monitoring your own BP and just go back to taking the BP pills. I was convinced this wasn't the right diagnosis but when I would get readings above 180 and a few time even above 200 systolic, I probably would have given up pursuing my independent path, since these numbers clearly put me in stroke territory.
But sometime ago I was seeing a blood pressure specialist who had prescribed Isradipine and another BP med. I knew from that experience that Isradipine worked to quickly lower high blood pressure but I also learned that even the lowest dosage worked too well on me and at times drove the systolic number below 100.
So during my recent hassle with my doctors, when the systolic number got above 180, I would try 10 or 15 minutes of meditation first. If that didn't work, I'd take an Isradipine pill (I still had the old prescription), cut it in half, and take that. I know that since the Isradipine med is housed in a hard plastic sheath, I shouldn't be cutting it in half. But it worked quickly to bring down the high systolic reading yet didn't drive it down too far.
In any event, I'm glad I stuck to my guns on this. I'm feeling better than I have in a long time just taking the extended release levodopa and no BP med.
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