please PLEASE share any input, im desperate :(

[NurseSassy]

Where do I even begin!!  I am a 23 y.o female, 4'11 105 pounds and do not smoke or drink.  For the past few years I have been a mystery to all of the doctors I have seen. It all started with dizziness, mostly when standing.  I have had a few syncopal episodes but far more presyncopal episodes (daily) my resting heart rate is usually between 110-120, and goes up considerably with any type of movement.  I become short of breath, and have severe palpitations. I get an overwhelming feeling of my "heartbeat" very often, and have a "vibration" over my right carotid artery that becomes more intense when my symptoms become worse. I consider it a bruit; my old cardiologist did an ultrasound and said that it was just thicker than usual.  I often have a deep discomfort in my chest, almost like heaviness. The only structural problem with my heart that has been diagnosed is mitral valve prolapse, which should not be the cause of all of my problems.  I had an implantable loop recorder placed a little over a year ago and all its shown is severe sinus tach. I was once a competitive cheerleader, but now I can no longer exercise (it’s been about 2 years) I am easily fatigued, which makes my job as a nurse very difficult.  My hands and feet are often ice cold and achy, although my capillary refill is pretty normal.  Exercise stress test with pulse up to 205 before they stopped me and also showed shortened PR intervals, which is also seen on EKG.  I have had every test in the book done, the last being an EP study, which failed to induce any abnormal rhythms, needless to say that was very upsetting to me. I’ve tried betexalol, and flourinef, both of which only made me feel worse.  The doctor put me on midodrine 5mg TID after the EP study and i have not had any improvements. He has basically diagnosed me with inappropriate sinus tachycardia, or POTS (they seem to be pretty interchangeable) although I feel like it may be something more than that due to the fact that NOTHING has worked to correct my symptoms. I do believe I have orthostatic hypotension, my blood pressure sitting was 120/80 pulse 110, when I stood BP 80/60 and pulse 140  I feel like I may have left out some valuable information, so If you need to know anything else to help put this puzzle together please let me know. I am desperately seeking answers and any response will be greatly appreciated!!

[kkrylee]

I forgot to state that she also has Mitral Valve Prolapse.  We have been told that it is not an issue to be concerned with.  But reading forums, there are a lot of people with Autonomic disorders that also have Mitral Valve Prolapse.  I think that there must be some connection.  

She also has a mild form of Ehlers Danlos, an Enlarged Globular Pituitary (9.9), and her vertebral artery does not connect to the Basilar artery, it ends in PICA.  All of these, according to doctors, are not an issue, but I have to wonder if some of her many symptoms could be related to any of this.

[kkrylee]

I know exactly what you are going through, as do many others on this site.  My daughter started with her problems at the age of 14 with temporary vision loss 15-20 x's a day every day.  At the age of 16, her symptoms became very dramatic with constant headache pressure, constant nausea, fatigue, and constant temp. vision loss.  After 5 yrs, we finally were able to travel to Dallas to an Autonomic Clinic to get a diagnosis.  So far, no meds have helped enough to justify continuing them but we are trying Medonin tomorrow.  

She is a dancer since the age of 2 and her dancing is being affected.  For a 2 minute dance, she is blind for 1/4 of the dance.  She no longer has the energy to go more than 2-3 days in a row with normal activities for her age.  She has approx 35 symptoms, in addition to the constant symptoms, that come and go at random.

The doctor at the autonomic clinic, after testing, says that she has POTS and Orthostatic Hypotension along with autonomic neuropathy.  Now we have to find a treatment that will work for her with few side affects.  We're still working on that.  But having a diagnosis is a wonderful feeling.  Previous Neurologists (5 of them) stated either that she was a teen so she must be depressed or that they were aware of autonomic disoders but not enough to treat her.  

She is now 18 and starting college in the fall.  She hopes to become a Pediatric Neurologist specializing in Dysautonomia.  But unless we get her symptoms better controlled she will have a hard time getting through Med School.

I wish you the best.  As a nurse, I hope that you will be able to educate others on "invisible" diseases like this so that patients can be diagnosed sooner.

[halbashes]

I am posting this response on behalf of our other community leader Heiferly.  She isn't feeling well, and so she may not be available this week.
_

IST (Inappropriate Sinus Tachycardia) and POTS (Postural Orthostatic Tachycardia Syndrome) are distinguished by the fact that the tachycardia associated with POTS is worsened by orthostatic stress, and alleviated by lying down.  IST occurs regardless of posture.  It's important to make the distinction because IST can sometimes be effectively treated with catheter ablation, whereas POTS can be worsened by ablation.  The heart rate increase of 30 bpm upon standing that you describe fits the definition of POTS exactly.

Dr. Blair Grubb has written extensively on POTS, and his book called The Fainting Phenomenon would probably give you a more comprehensive view of the mechanism, and different levels of severity that can occur with POTS.  Some people are able to maintain normal life activities with relatively minor lifestyle adjustments, while others are so severely affected that they are disabled by their symptoms.  Unfortunately, it's not unheard of for some patients to struggle despite their best efforts at treatment.

You didn't mention whether you've had the Tilt Table Test.  If you're interesting in pursuing more testing, you will likely have to seek out an expert on Dysautonomia, or visit one of the Dysautonomia clinics.  This might be especially helpful in your case as they would be able to address the MVP as well as the POTS.

Further Reading on Dysautonomia:
http://www.medhelp.org/health_pages/Neurological-Disorders/Further-Reading-on-Dysautonomia/show/696?cid=196

Dysautonomia Specialists:
http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Specialists/show/717?cid=196