New, But Lurking For Awhile!

[Mytwogirlsrox]

Hi everyone!

Im new and would like to introduce myself. I'm 27, married and a mother of two beautiful little girls. I was recently diagnosed with OH, NCS or POTS...?!?! Lol. It's only been since Jan of this year, and I'm frustrated as heck!

It all started with a migraine w/ an aura ( I had one previously when pregnant) I drank more water, relaxed and it passed with only a slight headache. Then I weaned my one year old from beast feeding, and had my first menses. I had soo many PVCs so I made a Dr appt to discuss the migraine and PVCs. EKG showed inverted twaves. I was referred to a cardiologist, I started to notice some anxiety, but couldn't figure out what exactly was wrong with me. One day while walking through Target with my babies, I had two major PVCs and I greyed out. I collected myself enough to call 911 ( thinking inverted t waves = disaster) I've never had these symptoms before, I was terrified. Paramedics said anxiety attack, so I declined an ER trip. I made another appt with my primary, in her office my sitting HR was 96 and BP was 80/50. I was trembling, thirsty and per-syncopal feeling. She advised me to be admitted to the hospital for a cardiac work up just in case it wasn't anxiety. After I was admitted the monitor kept catching my heart rate while standing up at 140. Therefore a TTTwas ordered and of course it was positive Hr shot up to 153, BP was 117/76 dropped to 110/72 after 40 mins -- nitro made me pass out. First cardiologist diagnosed me with NCS and orthostatic hypotension gave me florinef and sent me home. My follow up with an ELectrophysiologist said I have Pots. That was it! Take florinef and eat salt, hydrate... Go home! Lol

Well, I went from no symptoms before jan to every symptom known to man in a week ha ha ha.. Anxiety got the best of me! I was so scared..florinef made my anxiety worse! I began having numbness and tingling, flushing, insomnia, lost 25 lbs( I'm thin by nature) I was a mess. I decided to move home with my parents (both nurses) 3500 miles from my hubby but it's been a blessing. I went to the ER that my dad runs, because my parents were skeptical of my diagnosis. I was checked for a pheochromocytoma, carcinoid syndrome & a few other rare endocrine disorders (can't remember their names), had ct scans, echos, ultra sounds of my carotids etc.. Everything was NORMAL(besides a patent Foreamen Ovale, and a small old hole in my occipital lobe.. Yay)! Of course. This was a teaching facility in a metro area, and this huge group of Drs had no idea what POTS was nor why I would have it. Cardiologists included. Their best guess was that I was abnormally sensitive to stress (norepinephrine & epinephrine) & some PTSD from my baby being sick a few months prior.. Ehhh...

Now I'm just waiting to see another Cardiologist, since my primary Dr out here is a jerk & Tricare prime (insurance) is ridiculously hard to navigate. I'm trying to get a referral to see Dr Thomas Ahern at Scripps in La Jolla, he apparently is a POTS specialist in SD. I know I'm not overly affected like other people on this forum, but I would still like to know why I have this condition. It's terribly scary to think I might have some hidden or unrealized disease process occurring with in me.

So far my symptoms are >30 bpm increase upon standing sometimes with pulsing in my ears, sometimes fuzzy/ grey vision but not always. I seem to be more symptomatic in the am, and not very much in the evening. I do believe I pool blood in my legs and arms. I have a gnarly varicose vein my left leg from my hideous pregnancies, which has gotten worse over the past couple months since my symptoms began. My arm veins get very engorged and painful, especially when I'm hot. The anxiety/ adrenaline rushes are annoying and bothersome.. They have gotten better since I began celexa 10mg. But I still have really inappropriate "surges" .physically I'm mildly affected, but emotionally I'm traumatized.

I've always been a very fit, active, type A, independent, confident etc person. Now, I'm apprehensive and not confident in my physical or mental abilities. I wanted to attend nursing school once my littlest starts pre-school but now my future seems uncertain. I want to run, hike, bike, camp, travel etc.. But POTS has changed me.

I can't even figure out why I would get POTS. I have no family history of any neuro disorders, auto immune diseases, or collagen disorders. My baby did get very severely sick with a virus in November (2011) and I spent a week in the hospital with her. But I did not get sick. I did have c-sections (surgery) but they were a year at least before my symptoms began (jan 2012). I don't have diabetes, my sed rate & ANA was normal (no inflammatory/ autoimmune process occurring) I don't have digestive problems, dizziness or light headedness. I don't know what to think about it all.

Now I'm just trying to take care of myself and my girls. I'm currently am on celexa, I exercise 3-4 times a week, I take supplements to help get my body strong, something super interesting! One of my best friends was diagnosed with POTS like 6 months before I became symptomatic.. Weird huh? We live far far away from each other, or I woulda thought it was something in the water lol

Anyway, I'm so glad to have dinet! Thanks

[McBlonde]

Welcome!! It's amazing how many of us Type A, independent, totally fit people that POTS strikes down right in our prime for no apparent reason! It also amazes me how many physicians at big, major medical facilities have never heard of POTS. I hope you can find some answers!

[Mytwogirlsrox]

Thanks!

I'm just hoping that their experience with me, educated them. So the next "unusual" tachycardic patient they see, it clicks!

[corina]

Hi Mytwogirlsrox, welcome to the forum! There are a lot of understanding and friendly people around here to help you find the answers you need.

(Btw, I removed your double post, just so that you know)

[Mytwogirlsrox]

Thanks! I'm not savvy enough to erase it

[shan1212]

We are POTS twins! I'm new here too, and I also have two daughters and had an onset of symptoms after weaning my first daughter when she was a year old and getting my period back. I wonder how many people have had that be a trigger?

I'm glad you have a best friend who can relate. I have a friend who has it as well. She is very helpful as people just don't know much about it. My mother-in-law's boyfriend decided I didn't have POTS after googling it. Oh, OK, I'm sure the cardiologist was wrong (eye roll) . . .

I'm fairly early on in trying to figure out how to manage my POTS. I do think there's a mourning/acceptance process involved and I recognize intellectually that I need to go through that but emotionally I'm overwhelmed.

[Relax86]

You essentially just told my story -- different but the same. I have the same personality but not recently pregnant. I became sick around New Years and my entire life has changed. I did well not letting the anxiety get ahead of me and it sound like you did as well. The symptoms are so sudden, severe and worrisome it's so hard to not have concomitant anxiety. It nice that us Type A's usually know who we are....hehe...therefore not bullied into believing this is just an anxiety issue. I did not go thru as much testing to rule out the things that you did. Mostly because I'm not in a great location for medical care and I believed they would find me to be healthy or find vague things that would be inappropriately treated and make me worse. I'm doing better than most but still feel like I'm teetering between days of learning to live with this, hoping it will magically go away, and just plain giving up. I am amazed in the last 6 months how many more people are being diagnosed. This forum is full of very smart people, I think I've made some good decisions about my own care based on what I've learned here. Good luck in finding answers. I am sure you'll be able to start and complete nursing school. Will be watching for your success story. ~ Tracy

[Mytwogirlsrox]

Shan1212,

We are twins! My name is Shannon also!!

Wow, that is so weird to hear that you are experiencing the same thing. My parents are convinced that there is something related to the change in fluid volume from weaning the baby. I really want to agree with that theory too. Its kinda gives my theory a little bit more credibility that you too started to be symptomatic after weaning.. hmmm... I know that its been said that people feel better during pregnancy because of the increase in fluid volmue. AND, oddly I am less symptomatic during my period.. but I also tend to retain a lot of fluid during menses. I feel like a freak (Im so opposite sometimes of what pots peeps say they experience) I dont know about you, but I gained heaps of weight (45-60lbs) during my pregnancies then lost it all realitvely quickly--maybe that could explain it? I read somewhere that people who have gastric bypass sometimes get POTS. Anyway, hormones are crazy and I wouldnt doubt they play a huge role in this syndrome. My Dr. consulted the head of endocrinology at Loma Linda University here in S. California, and he didnt think hormones would be involved what so ever. But if you look at the list of symptoms of menopause, (anxiety, parathesias, tachycardia, sweating, flushing etc..) I think he's wrong. Not that I think I have menopause, I just think hormones are responsible for more than Drs give them credit for. (Ive been pregnant, hormones are insane lol)

So anyway, how old are your girls? Mine are 3 and 1. They're so amazing! Beautiful and smart.. crazy smart. Im so glad that I got pots after motherhood, so I didnt miss out on having my two little munchkins.

I totally know what you are talking about with the grieving this diagnosis. Im still waivering on rejecting it and accepting it. Its hard because my parents dont believe I have it. My husband kinda thinks Im a little nutso and overly concerned with my vitals. Sometimes I want to try and convice them I do have it, and other times I just want to follow suit and reject having it. I still wish that I didnt have it. Makes me sad to think that I am not normal, or that my babies could someday have this too.

Anyway, Im so glad to have someone to relate too.. please keep me update with your progress since I feel like were traveling down a similar road

[Mytwogirlsrox]

It nice that us Type A's usually know who we are....hehe...therefore not bullied into believing this is just an anxiety issue.

You know whats funny is that my husband insisted that I get into therapy when this all began. So when I went I told that therapist all about how Im so type A, I control my household etc.. and she said its so common for us type-a-ers to get a panic disorder or anxiety in light of a situation that is out of our control. Since essentially we thrive on control, and loss of control = anxiety attacks. I know now that there is physiological reason for my "anxiety attacks/ adrenaline surges" but I can also relate to her idea. The less control I have over this syndrome, the more and more anxious I become about it. Excercise has help me feel a little bit more in control, I feel atleast like I am helping myself get better (which probably isnt true, but its not hurting lol)

Im sorry that you are going through this, it took me a long time to even be able to sit down and read this site. So I can totally relate to wishing and hoping this would magically disappear. I still wish I didnt have this....

Thanks for the words of encouragement. I hope to see you posting some great success stories of your own soon.

[Katybug]

Mytwogirlsrox,

Welcome to the forum. Is there any chance you could have Lyme disease? Please believe that I do not think that everyone with POTS/NCS/OI has Lyme, but, you mentioned the anomalies in your T wave and I am fairly certain that that is one of the cardiac dysfunctions that Lyme causes. Many of us with POTS do not have any changes to our EKG, so I would definitely try to pursue a root cause for that.

Katie

[LindaJoy]

Welcome. I'm glad you found the forum. Lots of great information and support here.

When you wrote, "I can't even figure out why I would get POTS," I just smiled. How many of us have said the same thing, and continue to say it?! I say it all the time, I know. "How did I get this? What happened to me? I was healthy, I was in shape!" Ugh, the human body is complex. One never knows.

But, good that, when we do develop something like POTS, there's a great group just right here on your computer to come to, to help.

Again, glad to have you here. Not glad you've got POTS, but glad to meet you, just the same.

Take care and hugs,

Lindajoy

[Mytwogirlsrox]

Katybug,

I don't know about Lyme. I guess it wouldn't hurt to get checked, but I dont think I have it. My inverted twaves were never replicated holters were normal, subsequent ekgs were normal. I think the Leeds were placed wrong and all my labs are normal , not sure if that matters. Thanks for the suggestion, I will take all the advice suggestions I can get

[Mytwogirlsrox]

Lindajoy,

After reading this site so often since February I sound like a broken record. Im similar to most on his site wondering why and how it still upsets me. Everyone's stories inspire me.. I still have faith that we will find a cause and cure!

And yes im grateful for the support of this group

[shan1212]

Shannon, wow, we're totally twins. Now no one will ever remember which one of us is which! Except I'm older.

My girls are 2.5 and almost 3 months. I know it hasn't been that long since I gave birth but I confess I thought post-pregnancy I would revert to how I was when I first started having POTS symptoms, which was ill (vomiting, diarrhea, chills, and/or unable to get upright) only once every couple of months (I got sick after weaning my first daughter, so I did experience a pregnancy with POTS with my second, which was one of the hardest things I've gone through). I figured I could deal with being sick every couple of months. I wasn't expecting to feel symptoms all the time. My husband keeps saying that this is still a dynamic time in terms of weight loss, hormones, etc. and I need to have hope that it will get better.

I gained almost 50 pounds with both pregnancies, but unfortunately I don't lose it quickly. I still have about 25 pounds to get back to my pre-pregnancy weight with number two (and 12 more beyond that to get back to pre-pregnancy weight with number one, but I was super thin then so I've let that goal go).

Have you watched the Dinets video about POTS on YouTube? I found it on this site and watched it with my husband. It was definitely eye opening for him and very affirming that this is a real and serious thing that I have. That was helpful. That doesn't mean he's not allowed to grieve what we're both losing if I'm sick a lot, or to feel stressed by the extra work that he has to do, but it definitely helps that he gets it. Well, most of the time.

So how long do you imagine you'll be staying with your parents? That's got to be so hard. I hope you get some answers out there.