SeattleRain

Welcome. Sorry you're having these problems and having a hard time finding a diagnosis.

This is probably a total shot in the dark, but have you looked into glycogen storage disorders? I was at a continuing education conference recently where they were discussing people who present like they have peripheral vascular disease but don't actually have it. In some rare cases they have one these glycogen storage disorders. I think there are 11 different types. Not sure if it fits your symptoms at all since you didn't list a lot, but just the couple that you mentioned made me think of it. Do you have pain in your legs with exercise? Or is it more that you get the throbbing contractions with standing?

I don't think I've ever had pain in the legs when exercising. The marginal sharp pain in my legs seems to come when the pooling is at it's worst. It doesn't last very long. The main concern is the throbbing contractions when standing, palpitations, etc. I will definitely keep this in mind for the future though if we can't figure this out. Thanks for the response!

@Naomi -

Great to know I'm not the only one! Did you wake up gasping for air or anything when it would happen? Fortunately it doesn't happen very happen unless I do something that triggers it, like staying up a few hours later than my body wants to, or getting sick.

@Katybug -

Thank you!

I was just telling my husband today that every time a doctor uses a stethoscope on me and asks me to take several deep breaths I start to get very lightheaded. My husband said it doesn't happen to him so I'm thinking it is a symptom. I don't know what causes it exactly, but I imagine singing can cause the same response because singing can cause you to have to take many deep breaths. Of course, this is just a guess.

I think that's a great guess. When you take a deep breath or are singing, you're stimulating the Vagus nerve, which lowers your heart rate, blood pressure or both - which can lead to feeling light headed. Interestingly enough, the "Parasympathetic innervation of the heart" is controlled by the Vagus nerve, and the "Parasympaethic" nervous system is "one of the three main divisions of the autonomic nervous system". So it would make sense that POTS patients are much more affected by stimulation of the Vagus nerve through holding your breath, taking deep breaths and singing.

Wow, you're a trooper for going through all that. I hope all the tests go well - good luck!

Interesting. I was on Ambien a few years ago. It worked good at first but then people started telling me I called them in the wee hours of the morning, or texted them - saying really bizarre things.

Do you enjoy your sleep? I find the best time for me (symptom wise, and how good I feel) is when I'm sleeping. Ironically, waking up and falling asleep is the worst time for me in the day.

Thank you for the response, issie! I really appreciate it...

I was exercising regularly on my stationary bike. I'd go for about 30 minutes with my heart rate up to around 150/160bpm (Anything above felt uncomfortably dangerous). As soon as I get compression stockings, I'd like to start exercising again. Hopefully later this week...

It's good to get these things off your chest. Venting can really help with stress.

When other's are sick I can get anxiety/stress - sort of panicky. I've met a lot of people who are like this and think it's somewhat common.

I haven't been diagnosed with POTS (yet!) but I completely feel your pain! Waking up even a half an hour earlier than I would want to is nearly impossible. I've also had sleep problems for a long time. Getting to sleep is often very difficult, and I wake up maybe 30 - 50 times each night (awaking from sleep, then falling right back to sleep).

In regards to waking up I find that drinking a tall glass of water is make or break for how I feel in the morning. I prefer not to drink water right away, but I do it anyways and it really helps me. I keep a jug of water by my bed for this reason. Just out of curiosity, were you ever on sleeping pills (Ambien, Lunesta?)

Hey Everyone!

I'm a 24/yo Male from Washington state. I've been dealing with POTS-like symptoms since early July of this year (2012). It's really refreshing to find people, regardless of what my problem may be, who have been going through the same sort of symptoms. I thought I was the only one!

Although I'd like to write a novel describing everything little thing that's happened since then, I'm trying to keep it short with a couple questions:

1) Before you were diagnosed with POTS, did you get tested for Chronic Venous Insufficiency?

The blood pooling in my legs is the most persistent problem. I know it's not Edema and I'm unable to find anything besides POTS and CVI that could be causing this. It seems like the more obvious problem which (to my mind) could be leading to all of my other symptoms (Palpitations, and slow, throbbing contractions when standing or changing posture - like my heart doesn't have enough blood to pump).

I can now feel the pressure in my legs - like they're full of blood. When I lift my legs above my head before standing up, symptoms are reduced by 50 - 90%.

2) I'm seeing my cardiologist this week, any recommendations for what I should address?

I've already had a 2 day holter monitor, 2 week "Zio" patch, ER EKG's, chest x-rays and blood tests, and 1 stress echocardiogram. All "normal".

My lifestyle has been reduced to laying in bed all day long with the exception of getting food, showering and feeding my dogs. It's incredibly depressing and to make matters worse, I've been sick for over a month straight. After urgent care put me in the ER, they diagnosed me with acute Bronchitis and prescribed me antiobiotics for 5 days - which didn't seem to help. Now, it feels like it's spread from my chest into the bottom of my throat - an inflamed infected feeling. It seems like it goes away, then comes back - and repeats itself over and over.

3) Falling asleep is terrifying

If I'm awake for more than 13 hours or so, falling asleep becomes absolutely terrifying. So much so, that I fear of sudden death. It feels like at the exact moment I'm entering into the first stage of sleep, my heart stops beating, I stop breathing or both. Then, within that second or two, I wake up alarmed with a huge, pounding palpitation or contraction. It's like whatever controls my breathing/heart beat is malfunctioning between different states of consciousness.

This first happened in 2010 after staying up for about 28 hours when I had a horrible anxiety attack and recurred horribly in January when I was the sickest I've ever been with a cold virus.

Has anyone else experienced this?