You have been so kind with your support and concern. I give you a report back on my experience with fludrocortisone.
I suffer from low blood pressure that is thought to be possibly neurogenic in origin. I was treated with the above drug for symptomatic relief only. The drug is a potent mineral corticoid designed to have the kidney reabsorb sodium and raise blood pressure. In exchange, the kidney excretes potassium and I believe one hydrogen. This is an off label use of this medicine.
The drug has not been able to produce the full intended effect. Today, the dosage was increased but to no advantage yet as it has a rapid peak plasma uptake and half life. The experiment will continue for now. I diligently stay the course with doctor.
Please know this report is only interim and applies only to my condition. I thank you all for your continued hopes.
I've just started on NAC (pharmanac by bioadvantex ) to see if it helps with memory and other issues! It's had studied for use in Alzheimer's and Parkinson's autism! Loads of things it's been used in so hoping it helps me somewhere . Sending you hugs and prayers for the family 😍🤗
Hope it goes somewhere. I'm amazed at your patience with docs.
Many hugs to my family 🤗🤗🤗😊😊😊😊😊🐱🐶❤️❤️❤️❤️
To Lisa-anne, Englishmumof2, Amallia and everyone.
Thank you for everything. I hold out only the best thoughts and prayers to you all in your lives.
You are great big Blessings in this world.
Love you much.
Dan / Seattle
Thinking of you Dan and hope it works out well.
I started Low Dose Naltrexone at the start of the year which has helped reduce my seizures and tremors, and lifted brain fog (slightly) but still an improvement. Best part about this off label prescription medication (which can still be prescribed by your GP) Veru few if any side affects. No proof for FND but it's used in many similar neurological conditions. Just thought I'd mention incase anyone wanted to have a read up on it.
Take good care.
X
• in reply to
Sophers.
Thank you for well wishes and info. I will read up on that drug as well. Funny how off label uses can turn out to be so good in treatment.
The fludrocortisone acetate just by it's known mechanisms of action should have done much more than it has. Either vascular resistance is shot or cardiac structural abnormalities will be found in follow up. Best guess by docs is dysautonomia plus undefined. May be some wall stiffening in heart. All I know is it's got me taking pills all day long.
Dan, I am keeping you in my prayers. My heart goes out to you. Reading your postings one can feel what a kind an amazing person that you are. A blessing to many. May you have a day filled with many blessings and may you feel a ray of sunshine.
You must be among the angels who keep watch over my family. Prayers are so welcomed.
I am just ordinary human. I care very deeply for the well-being of others. I now believe it is best to listen to what is going on around me. Self awareness transitions to simple devotion as abilities decline.
Strong medicines force the body to adjust. The adjustments distort the natural process of life. It is not possible to understand what comes next. Lifelines drop from Heaven.
I give humble thanks for the spiritual gift you send. I send prayers back to you with eternal hope for a good and healthy life.
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