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Suspected Pots - So Glad To Be Here!


SeattleRain
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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?

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You may want to get checked for sleep apnea. Many of us with POTS have this.

As for the blood pooling - many here have this issue too. The thing to question is whether or not there is an issue with EDS (Ehlers Danlos) because this complicates both venous issues and POTS. I know you don't feel like it ---but, working the muscles in your legs is the absolute best thing to do for this problem. You can do exercises while in bed - if that's the only way you can. Most of us have to wear compression socks and some an abdominal binder because of blood flow issues.

Sorry, you found us because of the need. But, you will probably find lots of answers here.

My best advice to any one of the "newbies" ----is read, read and read some more. You can do searches on this forum ----as so many questions that you may have - probably have already been discussed.

Hoping for answers!

Issie

Edited by MomtoGiuliana
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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...

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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?

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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.

Has anyone else experienced this?

Wow, I haven't heard too many people talk about this one. YES. This was one of my first symptoms when the autonomic onslaught began. It was incredibly frightening. It happened every night for the first few weeks and then lessened over time, with fewer and fewer episodes over about the next year, and then slowly went away for good (thank God). I hope it goes away for you too. I have pooling in my legs/feet as well. One thing to possibly look into is neuropathy which can cause problems with blood vessels constricting. Have you had a tilt test yet?

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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!

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I have the swelling In my veins. It's very very scary and I actually could have erythromelalgia. My veins swell in my hands legs and knees and I can feel the fullness. They get heavy and elevating helps almost immediately. But I also get red burning tingling sensations so its kind of hard to explain. I also have severe heat intolerance. If I get too hot my body goes into a panic. I flush rwally bad and my skin gets blotchy. My face gets red and so do my hands and feet. Then my veins bulge and hurt. Its really weird and confuses doctors. Ive seen several doctors who all seem baffled but they suspect erythromelalgia and POTS combined. So sorry about your veins, its a horrible pain.

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Hi, I just wanted to say welcome and sorry you don't feel well.

1. no, I've never been tested for venous insufficiency

2. I don't have any suggestions to ask the cardiologist. mine would say 'you've had the full workup", you just need to exercise and learn to live with it. I hate that answer!!! Have you had bloodwork that tests for vitamin deficiencies and stuff? Could be making things worse. Like low b, d, iron, and magnesium.

3. I've felt this feeling!! Very scary. Sometimes, it's like my heart stops beating all together and that "drop" or realization, wakes me up and then it feels super tachy, hot, breathless, etc.

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Thank you for the responses, everyone!

misstraci, yes, each time I went to the cardiologist he brushed off my symptoms as "hey, everyone feels crummy sometimes." and "start exercising more". Argh!

I've had my blood tested each time I went to the ER. I don't know if they checked my Vitamin D levels but I own a tanning bed so that should be okay. Potassium came back low once but came back to normal the second time. I try to eat a banana each day now anyways. I take Epsom salt baths regularly as well as rub magnesium oil on my chest/arms regularly, so that should be fine, too.

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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..

Has anyone else experienced this?

Yes! This happened to me at the beginning of my worst slump. For a couple of weeks I was so wired/tired and your description exactly fits my fears and experiences at the time of falling asleep. The night waking was also terrifying and although I hadn't had a nightmare I would wake feeling terrified, like I needed to RUN AWAY! fast! Thankfully it settled down. Occasionally I still get the weird night time stuff but falling asleep isn't a problem in that way anymore. I hope it improves for you quickly!

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SeattleRain:

I notice that the cardiologist had you take many tests. Did they perform a tilt table test to confirm POTS?

No. Today I saw him and in my notes asked him if he had ever heard of POTS/Dysautonomia and he never answered the question - so I'm assuming he either had no idea what it is or seems like the type that would consider it pseudo-science.

Thank you for the response, Rachel!

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POTS is in neurology's field, although you will see some electrophysiologists who're researchers for POTS such as Dr. Grubb and Dr. Stewart, they're more into academic side of medicine.

For your everyday cardiologists they're not going to be familiar with POTS. You're much better off seeking consultation with a neurologist who's familiar with dysautonomia.

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POTS is in neurology's field, although you will see some electrophysiologists who're researchers for POTS such as Dr. Grubb and Dr. Stewart, they're more into academic side of medicine.

For your everyday cardiologists they're not going to be familiar with POTS. You're much better off seeking consultation with a neurologist who's familiar with dysautonomia.

Thanks for the advice, that's what I've been thinking. I just wanted to verify that I did have blood pooling in my legs with my cardiologist - but that didn't work out as planned. I was really hoping that it could just be venous insufficiency that's causing my problems but it looks like that's not the case. After GP I'm heading straight to a Dysautonomia neurologist another member here suggested.

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