grace

Well I started Florinef a week ago Monday and started the 2000mg/meal sodium plan my doctor suggested (I have a great document that lists high sodium foods with their sodium content if anyone is interested--just let me know). After "reading up" on the medication on this site, I called and asked my doctor if I could start at .05mg instead of .1mg he had initially prescribed. Well the first couple of days I felt really weird but by Thursday, it was like the sun came out after a year and a half of overcast and stormy skies! My eyebrows became "unknit," and I actually had some expression and life in my face (this was the first thing my wife noticed) instead of the usual "dazed, confussed and pained" look I normally walked around with. Amazingly, other than a massive pre-syncopal spell upon standing up at the end of a church service on Sunday (www.lifechurch.tv for anyone interested), I have had one week of clear headed, non-fatiqued, snap in my step living. But I am always in a "waiting" mode for the roof to cave in again!!! The doctor wanted me to increase to .1mg after a week at .05 and I tried, but after two days of 150/100 blood pressure, I dropped back to .05mg for now. I see him next week, and I am going to see if he'll just let me stay at this level as long as I'm feeling good... knock on wood!!!

That would be great to get that website on high sodium foods?

grace

I had a visit with my neurologist about the TTT and he said I was positive for Postural Tachycardia Syndrome. I?m still trying to educated myself about pots and still a little confused. He said my heart rate dropped 30 points after 30 minutes of tilting with no significant blood pressure change.

Every article I have been reading seems to imply that your blood pressure would change too. IS this really POTS? He is not a specialist in this field. He put me on a low dose of florinef . I also asked him about taking a blood volume test and he said it wasn?t necessary since I already tested positive. Is the blood volume test needed for something else or is it just another way of making a diagnosis for pots?

Thanks Grace

Hi,

Still a little new to this forum. I am going to get a (TTT) Thursday 20th for the first time to be tested for Pots. I was diagnosed with CFS and after recently learning about this, I presented the research to my doctor. I found a neurologist who is working with me and has the (TTT) but also have been reading that most people take a Blood Volume test at the same time? IF so, where can I get the name and type of lab work to ask for this?

Thank you Grace

Hi I am new to this and I want to express how lucky I am to have found this site.

I was watching the show mystery diagnoses and was stunned to realize after 10 years of suffering from CFS that out of all the Docs. I have seen that none mentioned pots. After doing some research on this It seems I have a lot of those symptoms.

I went to a neurologist that has a tilt table but they have only have had it for 2months. I haven?t been able find a cardiologist or neurologist that has experience in diagnosing dysautonomia specialist here in Utah.

Is there someone out there that knows a doctor here in Utah or Salt Lake City area? IF not, where can I get the exact tilt table test protocol so he can to it correctly. The neurologist is willing to work with me but I want to make sure he does it correctly or follow the way they test at JHU.

Thank you for your time

Grace