Finally Diagnosed

[southbel]

I want to thank everyone on this board that gave suggestions, offered support, and made me understand this is real thing and not 'just in my head'. Just for a bit of history. I was referred by my cardiologist to an EP to perform a tilt table test. Even though I had a substantial rise in my heart rate during the test, the EP said it was normal because my blood pressure raised significantly as well vice bottoming out. Went back to my cardiologist today. He disagreed with the EP and has diagnosed me with POTS. He has prescribed a long acting beta blocker (name escapes me right now), and suggested increased salt and fluids. He made clear and wanted me to know that this is NOT just in my head and is indeed a genuine medical issue. Just hearing that made me feel so much relief, as I'm sure many of you know.

I have multiple tests and appointments next week because there is some concern about the way I process calcium. He's very concerned that I am building up calcium inappropriately in my body (multiple calcium kidney stones,. calcium blockages in arteries, etc). He had me call all my relatives and get a very detailed family history and what I found out was a bit shocking. I have multiple relatives with POTS symptoms. In addition, we have a history of family members dying from massive cardiac arrest due to blockage at very young ages. Thus far, my aunt is the only one that's managed to get diagnosed before having a major heart attack and when they went in there to clean out her arteries, it was pure calcium.

Of note, they all had perfectly normal stress tests, echos, EKGs and blood work just like I did. I hope that getting this taken care of, along with the medication, will help my POTS. Right now, I am pretty much housebound because I can't stand for longer than 10 minutes without extreme shortness of breath, dizziness, and nausea.

[bellgirl]

So sorry about all your issues...but now that you know, you are on the road to better health. Don't become discouraged, because once you have some meds to counter some of your symptoms, you will start feeling better. I had major vertigo/dizziness, and I'm so much better since I was put on a beta blocker and clonazapam, but even a year later, after waiting 13 for a diagnosis, they are still finding out more, tweaking some of my meds and adding a few more. It takes patience, but on a road to better days. Welcome!!

[Chaos]

It's amazing how much it helps to have an "official" diagnosis, even though you know things aren't right and you know it's not in your head...when the tests keep coming back "normal" you start wondering. Think we've pretty much all been there at one time or another. So can certainly relate to what a relief it is to have a doctor finally give you an official label.

Sounds like you have some other stuff going on that might account for your POTS. Hopefully if they can treat that underlying stuff, maybe your POTS will improve and you'll be better. If nothing else, maybe the POTS is something of a blessing in disguise if it helps you catch these other seriously life threatening health problems that you seem to have a family history for.

Glad you have one answer. Now hope they can give you some more with your appointments next week.

Good luck! Keep us posted.

[southbel]

Yes, I was surprised how much I really wanted that diagnosis. It was validation that yes, I was genuinely having these symptoms. Interestingly enough, my cardiologist is very into holistic medicine and he thinks anxiety is largely over diagnosed in women. He also said something that really resonated with me. He said when a woman comes in complaining of a symptom, pain, etc, he automatically assumes it's even worse than the woman is saying because in his experience woman are much more stoic patients that tend to downplay their symptoms.

Now I get to go through tons and tons of test to try and find an underlying reason before they determine it is idiopathic. It's a pain but to have a doctor that both understands how much this can affect your life and understands both the problem and current treatments is so darn refreshing. He's a new cardiologist to this area and I feel a bit like I hit the jackpot with this guy.

One thing I noticed. If I need a referral to another doctor, he calls that doctor personally on the phone because he thinks I have suffered long enough and he wants me to get seen as soon as possible. I almost wanted to both cry and hug him after this appointment. I was starting to lose confidence in the medical community and he really has shown me there are some really GREAT doctors out there!

[Chaos]

It really sounds like you hit the jackpot with this doc!! That's great and half the battle in this journey with POTS. So glad you have someone good on your side to help you.

Please keep us posted as you find out more.

[jangle]

The calcium angle is interesting, but I have not read a connection between improper calcium metabolism and POTS. Let me know what your future tests indicate.

[jpjd59]

Wow! This doctor sounds great!!!! So nice to have a doctor that doesn't dismiss you just because they are not sure how to treat you.

[Mytwogirlsrox]

There is a study about calcitrol reversing pots in a case

http://www.ncbi.nlm.nih.gov/m/pubmed/22891006/?i=9&from=orthostatic%20tachycardia

However that seems as though it would be the opposite of your problem

[southbel]

Just an update. My doctor order a Calcium Scoring CT Scan out of concern to how I process calcium. I had a calcium score of zero, which means that I had no calcium in my cardiac arteries. This is very, very good news. I have an appointment with an endocrinologist today as they try and search for the cause of my POTS. I also have a urologist appointment on Friday for my kidney stones. Apparently, I still have that calcium issue (my kidney stones are always pure calcium) but it hasn't caused damage to my heart - so finally - some good news. Apparently, it's just a matter of changing my diet to not eat as much calcium and I should be able to manage this fine.

My Cardiologist started me on Toprol 12.5 per day. I have a lot of hope. I take it each night before bed and I have an almost totally normal feeling during the morning. Around noon, I start to degrade quickly and feel very badly but honestly, this is the best I've feel in months, even if just for a few hours. My Cardiologist called me yesterday just to check on me and see how the new medication was working (did I mention how much I like this doctor??). Told him about it and he felt encouraged; said it's just a matter of tweaking now.

Before this, I was almost 100% bed ridden due to dizziness, racing heart, nausea, vomiting, etc. To have hours of feeling normal is amazing. I know it's not a cure or perfect but darn it, I'm so excited that I am seeing any improvement at all!

[bellgirl]

Good news I think tweaking goes on for awhile, but I, like you, am very grateful...very seldom dizzy (except in the car), every now and then slight vertigo, no more tachy and nausea. I actually have an appetite!! It's always good to know when someone is improving with meds.

[southbel]

Yeah, I love having those few hours of normality. I know some of my friends and family are mortified that I only get a few hours of normal but they don't get it. Once you've been through months of having NO quality of life, to have even those few hours feels like a godsend.