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A MyParkinsonsTeam Member asked a question 💭
Lake Charles, LA

I posted this already but not sure where! Sorry! But how are y’all managing meds for orthostatic hypotension? We’re all over the place trying to get stable BP started with midodrine for several months but BP spiked and became erratic. Now trying very expensive droxidopa . Now at 200 mg still too low. Thx for sharing experiences!

September 26, 2023
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A MyParkinsonsTeam Member

I to tried midodrine for low BP. I would walk 5 to 10 steps and down I went - usually hitting my head on the door, handle, counter wall and floor. Amazing I didn't have a brain bleed since I am on bloodthinners. Make sure you get a tilt table test and a DaT scan. I was taken off midodrine and started taken first 1 gram then 2 grams of salt. Until my endocrine doc found out my adrenal glands were producing 0 hormones so I was started on fludricortiisoe. A big help. My neuro also checked my autonomic dysfunction and added hydrocortisone and I was able to get off salt tablets. Ask your doc to run a cortisol test and DaT scan and see if it helps.

October 31, 2023
A MyParkinsonsTeam Member

Hi Tfink, I took midodrine for several months for low BP. I forced myself to permanently increase how much I drink each day and manage my fluid loss from perfuse sweating. After a few months of successfully managing my fluid intake, my BP began to increase and stabilize and I was taken off midodrine. As long as I drink what my body needs each day, I no longer have BP issues but any failure on my part to stay well hydrated causes my BP to drop again.
Hope this is helpful. It seems to simple to be true but I lived it and it has been true for me.
Maria

October 22, 2023

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