My In-Depth Ttt Results

[sue1234]

I had my TTT 2 days ago. First off, I had to fast (food and water) for 4 hours in advance for my late-morning test. I found out not getting my fluid in in the morning made me feel worse by the time I had to walk in just to go to the test! I need to fluid load in the mornings!

I found out that my Stroke Volume decreased to 41 cc, which was only 35% of my baseline. If anyone can explain what that may suggest, please feel free. I don't understand stroke volume enough to know if that is a normal reading for a POTS patient or what. He said that I lose a lot of my fluid from the chest area.

The doctor said I have a lot of adrenaline. I knew that! I am a ball of adrenaline, but without the energy from it!! Basically, my heart rate and blood pressure rise the longer I stand, which I knew. My feet and hands turn purple/red, and they itch like crazy.

When upright, my cerebral perfusion went down 4 points, and my leg perfusion went down like 73 points! I'm not sure if the 4 points is significant or what, as I don't know of where to find any research to compare it to. So if anyone has anything on that, I would appreciate any info.

Basically, I am supposed to start Propranolol and Florinef. I have not wanted to try Florinef in the past, because occasionally I get super bloated in the upper abdomen, and I'm afraid retaining fluid could exacerbate that. I guess I'll just have to try it anyway and see what happens.

I was diagnosed with "moderate autonomic dysfunction". This report was going to my neurologist, who is supposed to oversee my treatment.

[RichGotsPots]

Where did u have it done? How long was it done for in all positions? How and when did they take blood to measure your catecholamines? What did they use to measure your perfusion in different regions of your body? Did they tell what they used to measure stroke volume? This will help me answer your questions.

Also it is strange to give a hyper POTSy patient a medicine like florinef that increases blood volume which will increase BP. I am hyper POTS but the pooling causes my BP to eventually crash after standing over 5 min or walking 2 min which means I also have delayed OH.

[sue1234]

Rich, I'm not at home right now to look at the report. But, I had pads attached to my chest, upper shoulder/back, each temple, lower stomach and on one calf. I had a blood pressure cuff on my arm, and I had a finger-type cuff on two fingers. I had NO blood drawn. Somehow he gets all this from the graphs coming from the leads. I did have my blood pressure go up, at one time but not sustained, to around 184/140. I think that's how he judged that I have a lot of adrenaline kicking in.

I had a baseline while lying down for about 10 minutes. Then I was upright for 30 minutes. Then, lying down again for 10 minutes.

I had this done at the Dysautonomia Clinic associated with UT (University of Texas) in Houston. I had found that they had a Dys. Clinic last spring, and wanted to get in it so I could be an established patient. That way, as any new research comes out with possible treatments, I have access to physicians that most likely are aware of the new treatment. Hopefully, anyway!

Besides my normal feelings I get when standing through a TTT, I had a "hollow" feeling in my chest that made me a little air hungry. During the test, I mentioned that, and said it feels like I don't have enough resistance in my chest when breathing. He said he could understand, and later said I apparently don't have enough volume in my chest when upright.

I think upping the blood volume will maybe prevent the adrenaline from kicking in. I think. He didn't say so, but I think if there is adequate volume circulating, then there is no "emergency" for my adrenaline to shoot out to fix.

[RichGotsPots]

Unfortunately the only way to confirm Hyperpots is the blood during the ttt. If I had to take an educated guess I would say they used an Impedence monitor called a Bio-z (something like this name not sure if its that actually). Basically it measures blood flow and volume the way an impedance scale does (complicated to go into). It's new/older, new because those impedance scales have only been around for a decade or so and old because they kind of fell out of favor quickly. Supposedly they aren't that accurate. Cleveland Clinic has been using a special nuclear scan they invented for the same purpose, but they are the omly one that uses it. I thought about buying a good impedence scalethat measure hydration, but passed because reviews were mixed. Sound like they are taking the impedence monitor more serious and thus are perfecting its use and comparison, which sounds promising. I had Bio-z done a long time ago.

The finger thing is actually cool, its a beat to beat BP monitor, that's what every TTT should have, usually centers only have them though.

So basically your treatment is hard for me to understand. If you have pooling usually that goes along with a BP drop. You can have both hypotension and hyperpots which I have. But the problem with treating that is the lability of our BP. You give me a Beta Blocker and my BP drops big time. You give me salt or a steroid like florinef that retains salt my BP spikes. Some people do use a BP raising med and a BP lowering at the same time to sandwich in our BP at the same time. The tricky part is getting both meds to work at exactlynthe same time. If one pushes hard then the BP goes in that direction. If you can tolerate Midodrine it's more immediate results for timing purposes. But a true hyperpotsie without ortho hypotension, would never handle florinef, midodrine, mestinon, licorice, ect.. Usually they start with an alpha+beta blocker and clonidine. Clonidine is what they use to reduce adrenaline in pheo tumors..