Don't know where to go from here!

[LaniR]

My first episode of heart problems happened when I stood up after eating in a restaurant one day. I felt like I was going to pass out, everything went black, and then it passed. Less than an hour later I started with a case of tachycardia and palpatations...and went downhill from there.
My 'current' diagnosis is SVT, but I was told my the electrophysiologist that I saw that it is not SVT because my symptoms do not correlate. All of my possible diagnosis include: PAT/SVT, metabolic acidosis, pulmonary hypertension, POTS, tumor on the adrenal gland, and "we may never figure out what is wrong". The test that I have had done are: EKG's, holter monitors, event monitor, tilt table test, gas exchange exercide study, cardiac treadmill, and echo's. Most of them have been abnormal to some degree--usually borderline abnormal.
I have been treated with Inderal (which has always worked the best and am currently on), Calan, Toprol, and Digoxin.
I will have episodes of severe tachycardia (passed out once and when I came to, my pulse was in the 190's). I get palpatations, dizziness, (and occasional sharp chest pain). After it resolves, I am completely exausted.
I may be fine for several months, but then all of a sudden, it just starts one day and will last anywhere from a few weeks to several months, and then I am fine again. Sometimes, it will have a gradual onset, in the sense that I will have mild symptoms that require the need for meds, so will just gradually increase the meds as the symptoms worsen. Although, my symptoms have changed over the past year or so. Instead of have the intense episodes of tachycardia, I am now having palpatations, yet when I take my pulse it is relatively normal, but my blood pressure, which used to be completely normal at 120/80, has now been running around 106/56 to 90/50, and will occasionally black out when I stand up.
This has been going on for over four years now with no luck actually finding anything. I have seen several different cardiologist's, an electrophysiologist, and a pulmonologist that specialized in metabolic disorders. I am just frustrated, and feel ready to give up on it and just live with it, but don't want to because I am only 23 years old and would like to get it under control or learn how to control/handle it.
Don't know what to do now!!!

[projapoti]

Have you ever been able to get an EKG reading when the symptoms were happening? It's interesting that they mentioned an adrenal tumour. They're probably thinking of something called pheochromocytoma. When these episodes of tachycardia happen, do you get hot and flushed as well? Do you feel anxious when it's happening?

Another thing....I noticed you said that you were on a holter monitor. Those things are garbage (no offense to you of course)....you should try a loop recorder. Have they ever given you one of those?

In terms o' the other diagnoses...I'm not so sure about pulmonary hypertension...you're too young for that...I'm also pretty sure that chronic lung diseases leading to pulmonary hypertension have to be around for a looooong time before they cause that. Do you have any chronic lung disease?

As for metabolic acidosis...that's just weird. First of all...you'd be a lot sicker...second of all, metabolic acidosis is very easy to diagnose by looking at one's blood gases and other bloodwork. Third, it can be dealt with pretty easily.

What is POTS by the way?

You could be having episodes of orthostatic hypotension as well (judging from the fact that your blood pressure lowers when you stand up)

What did your electrophysiologist mean by your "symptoms don't correlate with SVT"? By definition, you have a PSVT...a paroxysmal supraventricular tachycardia...i.e. a fast heartbeat that presents itself from time to time. I'm pretty sure you don't have a ventricular tachycardia, 'cause you'd be a lot sicker....I guess what I'm trying to get at is, SVTs are diagnosed by looking at the EKG and seeing a fast rhythm with narrow QRS complexes. It is often associated with symptoms, but having them or not having having doesn't rule out a diagnosis.

[zuzu8]

PROJAPOTI- I am always amazed by your knowledge. Usually when I see you've resonded to a post the thought always crosses my mind "oh, projapoti will handle this!"
However, here's my chance to answer something for you for a change!:
POTS stands for Postural Orthostatic Tachycardia Syndrome and is one of the many disorders that falls under the umbrella of dysautonomia.

zuzu xx

[projapoti]

Thanks for the kind words zuzu, and thanks for the clearing up of the acronym!

[khudsonwv]

sounds like PSVT episodes to me too - actually it is text book PSVT. trust me i know i lived with it for two years before my ablations. Did your electropysiologist do an EP study??? as for the pulmonary hypertension it is a long shot simply because the episodes dont match up - my nephew who is 18 has it and his symptoms are not like yours.... hang in there and, if need be, get a second opinion .. best of luck