Anyone struggling with low Blood pressure (orthostatic hypotension) and using droxidopa? How to manage? Thx!

[tg1058]

my hwp has very erratic BP readings. Doctors switched from midodrine to droxidopa (northera) 3 weeks ago to see if can regulate. But his dose of stalevo every 4 hours brings BP down! Droxidopa brings it up but never stable! Now on 200 mg in am and 100mg 2 more times if needed. Any suggestions as to management? Still experimenting. He falls if too low and it’s unannounced! I follow him like a puppy to catch any potential falls! Thx best wishes to all!

[park_bear]

Presumably you already have a blood pressure cuff to monitor the results of your interventions. Be very careful about making any interventions towards evening because orthostatic hypertension is often accompanied by supine hypertension - excessive blood pressure upon lying down in the evening.

With that said, in the morning, upon taking his dose of stalevo, also drink up to 1 quart or 1 L of isotonic saline. Isotonic saline is made by adding 8 grams of salt to 1 quart of water, or 9 g to 1 L. That raises the blood volume and therefore increases blood pressure. Plain water does not work very well because the kidneys will excrete it rapidly. If you try this check his blood pressure after the saline has been absorbed to make sure his BP is not too high.

[tg1058 in reply to park_bear]

Thank you sooo much for your response! Dr took him off morning dose of Florinef after putting him on droxidopa. We will try the saline drink in the morning! Many thanks and appreciate your help!🥰

[JcbRed]

Hi. I have very low bp as well as early PD and take Midodrine (3x daily) as well as droxidopa (am) and it’s lowest in the am. I try not to get up at night with captopril and bedhead raised which raise bp. I also take two tsp salt daily with 2-3l water and wear support stockings/ tights. I thought it was only (!) POTS but more likely neurally mediated hypotension related to PD. I had a few faints in am mainly in bathroom (a risky area) so am more careful there, and too tired in evenings to walk much. I also take 3 x cl/Levadopa so am watching that but find it hard without it. It’s a big thing to juggle and not sure I’ve got it right yet. And good sleep also helps ….

[JcbRed in reply to JcbRed]

Sorry I meant that bp raises at night so the bedraise and captopril drop it! But then it’s super low until I have meds, tea, lots of water and take 1-2 hours to get up …

[tg1058 in reply to JcbRed]

Thanks for sharing! Gonna try the salt water! Yes, it seems to be a constant balancing act ! Best wishes!

[104L]

When my 75 yo wife’s PD meds reduced her BP (digital cuff) I would immediately put her on an electric bike for 15 minutes. That peddling seemed to get her BP back to normal more often than not. Bike we used is easy to use and about $150 from Harman Schlemmer. I am not an MD so discuss with your doctor.

[tg1058 in reply to 104L]

Thank you great idea! We have a peddling bike! Gonna try that. I try to get him to move arms up and down but the peddling seems like it would be more effective.

[pdbuzzboard]

nOH is probably the biggest issue my wife has with Parkinson's and has been the most challenging to manage. She is on 400mg Droxidopa in the AM and 300mg at noon and 300mg 5:00. She also gets 5mg of midodrine first thing in the morning.

Moving from Sinemet to Rytary (slow release CD/LD) has helped with the leveling out of BP. She doesn't have the big initial drop that Sinemet was giving her. Keeping hydrated (Gatorade and V8 are great tools) helps as well. The biggest has been behavior changes. Before standing, she marches in place (while sitting) or waves her arms over her head for a few seconds. Upon standing, she counts to 10 before she moves away from the chair. She says the biggest item is to understand the feeling of the BP drop starting so you can get down on a knee for safety. Unfortunately, the only to practice this is to experience a bunch of BP drops.

My favorite trick, and item of last resort, has been good old fashioned smelling salts (they sell them for weightlifters if you can believe it). When she starts to get light, a couple strong whiffs of smelling salts will snap her back. It's really nice to have something that I can do when she is crashing.

Finally, the VCR gloves have really helped "build a floor" on her BP. The swings are not nearly what they used to be. Of course, these are highly experimental at this stage.

[tg1058 in reply to pdbuzzboard]

Never heard of using the smelling salts and not sure what VCR gloves are. I’ll be experimenting with it for sure! I’m desperate! You have been busy trying to get a handle on this for your wife! Happy to know it’s all helping her! I sure appreciate your response. All so helpful!

Best wishes,

Tina and George!

[pdbuzzboard in reply to tg1058]

VCR are the Vibrotactile Coordinated Reset gloves. Also known as the Tass gloves, the Stanford gloves or the vibrating gloves. There are a couple of great threads on this site regarding them. At this point, we are waiting for the FDA approval on the official gloves and there are a number of fine DIY solutions available.

The smelling salts were my own discovery out of frustration/desperation. She would have bouts of low BP that would render her unresponsive. My only recourse was to make sure she didn't hurt herself and wait them out. She is able to tell me when she is "feeling light", which gives me a couple seconds to respond.

The count to 10 upon standing and leg/arm movements to increase blood pressure have been a big help.

Best of luck.

[tg1058 in reply to pdbuzzboard]

Great thank you! My husband had 2 seizures due to low BP about a minute each! Very scary!

[gwendolinej]

We had an interesting thing happen when we followed park_bear’s suggestion of high dose vitamin C for constipation. Not only did it solve my husband’s constipation problem, but it fixed his blood pressure problem as well. He had high blood pressure in late afternoon and overnight and low blood pressure in the morning. It fixed both. Our GP’s comment “He now has the blood pressure of a 20 year old”. I’ve since seen research that had this same result.

[tg1058 in reply to gwendolinej]

Oh wow!!! Well darn we’re gonna have to try it!!! Never heard that! Thanks for sharing!!!

[tg1058 in reply to gwendolinej]

By the way what was the high dose amount of vitamin C if you don’t mind? Thank you!

[gwendolinej]

We use a powder. My husband takes it twice daily. …5 grams in am and 5 grams pm. Love to know if it works for you.

Gwendoline

[tg1058 in reply to gwendolinej]

Hi the vitamin c I have on hand is called Emergen-C 1000 mg powder. What’s your brand please? Thx!

[gwendolinej]

we are in Australia and use an Australian brand. It’s BioCeuticals CBioActive.