postural tachycardia syndrome

sher66 · 07-24-2007, 02:01 PM

I have a 19 yr. old daughter that has POTS. She is on florinef and uses compression stockings. She has been on Toprol and Theadur and the side effects were terrible! Does anyone have any advice or somthing she can do to make her life better?
sherr

feelbad · 07-25-2007, 12:38 PM

i just have to ask if this was a quick dx or other things were ruled out before they decided this is what she actually has for certain?who actually made this Dx,what type of doc?what do her actual blood pressures do upon standing,as opposed to sitting?any differences there or just the quicker heart rates?has she ever had c spine problems or any surgeries that were done around the neck area? FB

sher66 · 07-25-2007, 03:22 PM

Quote:

Originally Posted by feelbad

i just have to ask if this was a quick dx or other things were ruled out before they decided this is what she actually has for certain?who actually made this Dx,what type of doc?what do her actual blood pressures do upon standing,as opposed to sitting?any differences there or just the quicker heart rates?has she ever had c spine problems or any surgeries that were done around the neck area? FB

She had multiple test, including a tilt table test that came back positive. She is going to a electrophysiologist/cardiologist. Her blood pressure normally drops alot when standing along with her heart rate that jumps about 50 pts. She has never had neck or spine surgery, but she has had have a blood patch done twice (middle of her spine) after being tested for meningitis. She complains of headaches all the time and nausea and of course she has no energy.
sher

feelbad · 07-26-2007, 08:22 AM

just a thought here sher.the one big thing you need to be certain of is any actual Dx of any condition.the thing is,i have the same exact symptoms as she does but mine are being casued by a damaged sympathetic/para sympathetic nervous system.same symptoms,different reason.this is why i asked about the possible neck issues,only becasue this is usually the most likely area where damage can take place to the SNS and para.has she ever had an MRI done on that area at all?there are just areas within the neck itself(the stellate ganglion) and within the lower c spine(around the c 7 thru T 1 areas)where if it became affected by something that did indeed affect the SNS,it could be the culprit for her symptoms.have they told her just what is actually causing her headaches?c spine problems(believe me) can also cause headaches.a simple MRI with contrast would just help to either rule it out or in as a possible reason for her POTS and orthostatic hypotension.

it may very well just be what she was Dxed with,but since other things can also cause her types of symptoms,they just need to be ruled out before settling for any real Dx.it can just change treatment options and possibly indicate another issue that no one is even aware of just because no one has bothered to actually look there,you know what i mean?this was the case with me.i just happened to find out upon MRI for a herniated disc that there was something that had been inside of my spinal cord all my life but just never knew it becasue it had not become 'symptomatic' yet and i had never had a real reason to even have an MRI before then.it was only discovered as an "incidental" finding upon MRI,but it had to come out becasue of bleeding.that was when my SNS was actually damaged.honestly,you just do not have a freakin clue as to what in the heck is actually going on within your own body til you actually take some sort of deep look into it.i would just want to make certain,espescially given the headaches?that the c spine and the brain are both okay.one contrasted MRI would at least do that much for her.i wish you both luck and hope things will get better for her.please keep me posted as to how things are going,K? FB

doyle624 · 07-30-2007, 07:22 AM

Hi Sher-
I haven't been on for awhile because I started using a CPAP machine for sleep apnea. My experience with POTS is limited but I understand what your daughter is going through. Feeling dizzy and sick all the time is horrible...I was prescribed Levsinex .125mg, stockings, and rest. I was told to stay out of the heat, increase my salt intake, and drink lots of fluids. I know it sounds bad, but people with POTS can't do much if they wanna feel good. The meds do help and I hope your daughter feels better. I hate my restrictions and not feeling normal...but I have a great family and they all try to make things easier on me.