"new" To Pots Diagnosis

[Purple]

Hi all,

I'm so very relieved that this forum exists and that I found it. To say I'm frustrated is an understatement.

My first symptoms of POTS showed up at around age 13... blurred vision, numbness in my arms, fatigue and dizziness. After examining me, my pediatrician and the optometrist I saw decided that I was making up my symptoms. They suspected I was depressed.

My symptoms were ignored for 5 more years. At around 18, more symptoms showed up. The fatigue and dizzy spells got worse and more frequent, I started to feel weak, and like I would faint and my heart would start racing after about 5-10 minutes of exercise, which didn't make sense because I had been very athletic until that started. They diagnosed me with PCOS, insulin resistance, anxiety and said I was just deconditioned (not so). During college, the dizziness got so bad that I would have to lay down on the floor in my classroom during my 4 hour studio (architecture) classes. I now realize it was because I stood for most of the class because sitting on the tall stools at the drafting tables made my legs feel like they were going to sleep.

My symptoms were mostly gone for a few years, except for the fatigue, dizzy spells, memory issues and trouble staying focused.

At 32, 8 months pregnant with my second child, I had an SVT (hr at 220) after bending over to pick up an object and feeling a pop in my heart when I came back to an upright position. ( I now believe this happened because of POTS). They diagnosed a left bundle branch block. Now at 34, I've developed mild cardiomyopathy (possibly tachycardia induced). I've had excessive fatigue, chest pain and tightness, leg and arm pain and numbness and much more since January. They ablated an accessory pathway in/near my AV node during a recent EP study, but they could not ablate the left bundle block. My symtpoms were all relieved, but about a month after the ablation everything started again and was much worse.

My cardiologist suggested a tilt test because he suspected I had orthostatic hypotension. He was wrong, my blood pressure went up, not down and my heart rate went way up. He's still not sure though so I just spent the last two days wearing a holter monitor, hoping to get clear results, diagnosis and help. So over the years dozens of doctors have implied or outright said that I was imagining my symptoms. One doctor even laughed at me and told me I was too young to feel pain. I'm so disappointed that it's taken 21 years to get this close to an accurate diagnosis.

To complicate things even further, I have had PTSD since I was 5. The trauma that I believe brought on POTS was years of being raped by a close family member as a young child. The symptoms started within a few months of the abuse ending. This is the only trauma I've experienced. My symptoms get worse with stress, colds and a few days before my cycle starts through it's end.

I'm so glad to be here with you all. Since learning about POTS so much of my life makes more sense. And even though I don't wish this on anyone, it feels wonderful to know I'm not alone.

[HopeSprings]

So over the years dozens of doctors have implied or outright said that I was imagining my symptoms. One doctor even laughed at me and told me I was too young to feel pain. I'm so disappointed that it's taken 21 years to get this close to an accurate diagnosis.

I am sorry you were treated this way by Doctors. It took me about 10 years to finally to get a diagnosis and in that time I encountered many uncaring, dismissive, & insensitive Doctors. It's good you finally have your answer - now maybe you can get some help. Have you looked at hyperadrenergic POTS with the high BP? It doesn't sound like the cardiologist you're seeing knows much about POTS - maybe find someone who is more knowledgable?

[looneymom]

Glad you found us. Keep looking for a doctor that can help you and never give up. POTS is strange and unpredictable. Sorry it has taken you so long to find out about POTS. I am a parent of a son that got exteremly sick when he was 10 and it took a year to get to MAYO to figure out it was POTS. As an adult, your doctors should take you more seriously. Hang in there and hopefully you will find a doctor that can help you.

[leydengs]

Purple - First of all it's great to meet you but I am so unbelievably sorry for your frustrating journey and for what caused your POTS. Before getting my diagnosis (I too have had it since I was a 13 or 14) I was told I was faking even after passing out during soccer and basketball games, I was told I was depressed, I had an anxiety disorder, I have ADD, etc. It is a very frustrating journey and I still feel bad saying when I don't feel well, I usually try to hide when I feel horrible because for so many years I was told that it was in my head so sometimes I think that's true. Finding doctors who know of or specialize in POTS will be huge because they will be more sympathetic to each other your symptoms. Doctors who don't understand POTS just don't understand when you rattle off all these totally different things that are wrong, they just assume that you are making it up because it can't be possible to have that many things wrong at once. If you aren't happy with a doctor don't feel like you are stuck with them, go see another one until you find one that will listen to you!!

From my understanding of the tilt table test if your HR goes up more than 30 bpm that's POTS, I don't think you have to have the BP drop to get the diagnosis - someone please correct me if I'm wrong

If you need a laugh check out the chit chat forum and go to "You know you have POTS when...." they are pretty funny and you will realize that all the crazy/strange things you do are TOTALLY normal to us http://forums.dinet.org/index.php?/topic/18761-you-know-you-have-pots-whensilly-post/

Good luck and keep us posted!!

[weathermandj]

@leydengs I think you're right about the TTT POTS Dx criteria. Question though...do people normally get their TTT results of whether it's positive or negative for POTS immediately after the test or that day?