Seeking input from the 30% of PD patients experiencing orthostatic hypotension.

[ggg]

There is an MD at stanford.

Let me know if you want a link.

[Jean Stewart]

Thanks. I’ll reach out for contact if we exhaust local resources.

[Bob]

Hi Jean,

Measure blood pressure first thing in the morning. If low give him 1/4 to 1/2 tsp Celtic sea salt or Himalayan salt, each has 80+ minerals unlike table salt which has two, Na and Cl. If low anytime during the day, repeat.

[Jean Stewart]

We haven’t tried salt yet. Midodrine & Fludrocortisone helps but half-life is short and it doesn’t always get us the result we’re seeking. Thanks for the suggestion – from what I’m reading, it seems that a combination of things provides the best outcome. Thanks.

[K Ride]

My HwP has extreme BP variances; he can change 100 points systolic in 90 minutes. I told our cardiologist that when husbands BP drops to where he loses some mentation, I wait til it passes (less than 10 minutes) and have him drink an electrolyte solution. The doc agreed. I usually add more salt to it as well. Good luck, it’s scary and hard to manage. Keeping well hydrated is also important. Please note that I would NOT give an electrolyte solution every day – our doc knows that I only do this once or twice a week. Please ask your own doc for some guidance on this – too many electrolytes would not be good for the heart is what I have read.

[Jean Stewart]

It is scary! Thanks for the suggestion. Willing to try a variety of modalities to help.

[Joyce]

Midodrine is a prescription medication which the doctor can prescribe to tighten blood vessels but the person cannot lay in bed all day as it will cause high blood pressure,.Thermotabs is a buffered salt supplement I get from Amazon which will not irritate the stomach, 5-10 times a day. A wrist blood pressure unit does not function properly when taking bp of a PD person. Compression socks are a must! Again-Amazon. I did not tell the doctor but I cut the feet off in the summer because sometimes I like to wear them all night in the event I have to go to the bathroom and they make my feet to warm. A waist compression band is also a must-Tommie Copper is excellent. I purchase -Amazon- powdered Gatorade, mix it, and drink it all day. I first had this happen when I started oh PD medication.Found out what it was, treated it as described and it went away. In July I could not get out of bed and was rushed to my neurologist – it was back again after 3.5 years but with out the dizziness so I did not know what was happening.Saw him this week and he said I did very well only dropped 4 pt! My problem now is I have absolutely no stamina and do not leave the bedroom. He said it is not PD but the fact that I have isolated myself. I was also having trouble with extreme fatigue and had a sleep study done which took six months as a result of COVID backlog=38% sleep efficiency, now have CPAP machine. Still no stamina! Hope some thing here helps.

[Jean Stewart]

Yes, he’s on Midodrine at the max dose. Compression stockings and monitoring/pushing his fluids daily are already employed. I’ll be ordering the Thermotabs. Thanks for the suggestion. I hope you find some answers to your reduced stamina.

[Gerald McCarty]

I was put on Encatapone a while back when my time between C/L doses was down to 4 hours, around the clock. After 2 weeks on the newly added medication, I was having severe orthostatic hypotension. After trying to contact my neurologist and getting no response, I switched to a new neurologist and was quickly switched to Rytary, which my old neurologist rejected as an option. My orthostatic hypotension went away and I am doing better than I had been for the previous 6 months. I take Rytary every 5 hours except at night when I take 2 C/L ER tablets that get me through until my 5am morning Rytary dose.

[Elaine Droz]

I have PD and was diagnosed with OH several months ago. I was prescribed .1 mg of Fludrocortisone a day, and it has worked well. I’m not aware of any adverse side-effects.