Mytwogirlsrox

My fear with POTS- that it's a symptom of something catastrophic (or that I think is scary--MS, ALS etc) I'm going to drop dead, my children will inherit this, my quality of life will deteriorate to invalid status Pre-pots fears--- losing my children or husband, heights

Wow I didn't realize your daughter is so young. I'm sorry. I hope you can find right dose that helps.

I had horrible anxiety with florinef. I only took it for a week @ .2mg and I was riddled with anxiety and panic attacks. It lasted for about a month after cessation too. I didn't make the connection at first, but now it's obvious that the steroid tipped my brain chemistry. Sorry your daughter is experiencing this, anyway you guys can reduce The dose or start an SSRI? Celexa really helpe pull me out of the anxiety/ depression

My heart rate is always usually between 85 and 110 standing, sitting its 80 to 90 and laying its between 60 and 70 . I'm pretty much always potsy. But I do have adrenaline rushes where my Hr goes up to 150 or so, I could be sitting, standing or laying when this happens

I'm not overly affected by pots, but I did have a hard time getting into an exercise routine ( I just started a bout a month ago, so I'm no expert) but the elliptical is where I started. Just 10 mins ... It got my HR going good lol. Now I'm up to 45 mins with 20 mins of warm up and cooling off on the treadmill. I think it's really important for my heart to warm up.. I walk at like 1.0 mph and gradually increase to whenever my heart rate reaches 120 over a 10-20 min period. For some reason my exercise goes better than if I just hop on and go at it. Anyway, just over one month and Im getting a lot better at exercise... My HR doesn't get up so high so fast anymore, and it doesn't take forever to slow back down. I have noticed that my POTS is more exaggerated after exercise though.. Usually it's 25-30bpm increase upon standing, but after exercise it's more like 40-50bpm Anyway, I'm glad your trying to exercise! It's good for anyone's mental health too

I'm definitely more symptomatic Heart rate wise. It's usually above 110 just walking to the bathroom and I get a nice head rush regardless of how slow I get out of bed ..

I read so many of your stories, and I feel like such an odd ball.. Im not abnormally tired... Is that weird? I get tired, trust me, but it seems pretty normal considering that I'm raising my two girls (1yr and 3yrs) and were generally on the go-go! Plus I go to the gym 4-5 times a week. This whole POTS thing is so bizarre, that we all have this syndrome yet it varies so greatly between us all.

Who knows, I had two babies literally back to back and breastfed them both for a year.. So it felt like I spent years on my booty Prego or nursing. I think there is more involved though ... The body is too complex for this simplistic explanation.

I have tons of PVCs & PACs that started when my POTS started. When I stand, Im quite frequently in bigeminy (meaning every other beat is a PVC) I'm getting kinda use to it, sometimes they really take my breath away. My cardiologist said they're benign, and sometimes caused by electrolyte imbalance. my parents get them too.. Pre-pots I would get them like crazy when I drank too much coffee

I'm sorry that you feel this way. I'm sure it's very hard to be young and changed by pots. I, too, struggle with this-- so don't feel alone. Maybe it's time to try something new, that you are able to do that is fun? Maybe water aerobics? Synchronized swimming? Do you get on pinterest, it has tons of cool crafts, or maybe get into photography?

I am by far NOT an expert! And I'm so sorry to hear about all your woes. I have had all the pheo testing, carcinoid syndrome and other neuroendocrine tumor disorders. My lab values were normal, but I'm pretty positive I have plain ole pots. I'm glad your doctors are investigating possible scenarios causing your symptoms, I hope they uncover something abnormal ( in the best way possible, so you can get better) If your interested here are my values: Plasma metanephrine <25 Metanephrine total urine 178 Metanephrine urine 83 Normetanephrine plasma 39 Normetanephrine urine 95 Plasma renin 1.32 24hr urine catacholamines 33 24hr urine dopamine 307 24hr urine epi 9 24hr urine norepinephrine 24 Cortisol 33.2 (high) Hope that kinda helps

Pro-- my husbands work is transferring us to California to be closer with my family. Incredible since we haven't lived within 2500 miles of my family in 8 years Con--- I'm still very upset, confused, depressed, etc about the diagnosis

I've had a few ... Once one ruptured... It was insanely painful. When I became pregnant, they found a few in my ovaries, but no one made a big deal about them. ??

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

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

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.

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

Thanks! I'm not savvy enough to erase it

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

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