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Here's A New One For Ya.....


misstraci
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I may not have mentioned this but I had a new neurologist see me last month and he was very polite, it was a nice change from what I'm used to experiencing, well, although he was nice, he did not run any tests or offer any suggestions other than I should follow up with a cardiologist and if needed, he could give me a referrel to mayo or vanderbilt. I was ok with this.

So today, I had an appointment with a new cardiologist (like he suggested) at, what I believe to be the best medical facility in Atlanta and probably the best doctors we have to offer. The man was nice, don't get me wrong, but he blatantly said, he could not help. Said he wasn't sure if it was even POTS or not, but he knew that he couldn't help me. He did however say this......... he did the stethascope and asked me to breathe as deeply as i could and he didn't stop me, just kept listening. so after about ten humongous breathes, i was very dizzy and lightheaded and i told him so. He stopped me and asked if this is what it feels like when i feel "dizzy" as i had explained to him earlier. I said yes. He then proceeded to tell me that he thinks I may actaully have what's called hyperventalation syndrome :)

I almost laughed. Not because his theory was terrible, it could possibly explain why someone who takes hugely deep breaths gets lightheaded but it can't explain why i have felt like death 24/7 for the past two years. I'm sorry but no.

Has anyone ever been "diagnosed" with this one?! It was a first for me.

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I've actually self diagnosed myself with it. I know I also have pots but I think hyperventilation syndrome can accompany it because of the excess sympathetic response. Sometimes I hyperventilate so much I start burping up air every 30 seconds because I keep swallowing it without realizing it. So I don't think he was completely off cause I think we do all hyperventilate as part of this disease but that syndrome is not the ONLY thing we have. Sorry you got no help:( I have that experience regularly.

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Yeah, it definitely doesn't explain the whole picture. But I do think Julie's right in that it can be part of POTS - I do it too, as well as catch myself holding my breath. It's especially bad when getting up in the morning, with so much pressure in my chest, I feel like I can't breathe, which then causes me to hyperventilate, which then causes my heart to beat even faster and probably makes me even dizzier. It's a vicious cycle and I try to calm my breathing, but it's so hard when you feel like you can't breathe! Deep breathing was part of my autonomic testing under "parasympathetic testing." Not sure what that means exactly, but apparently my heart responded appropriately. Anyway, in regards to the bigger picture here, if he can't help (as he said) -- hope you can find someone who WILL.

Edited because of many typos - geez.

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Maybe hyperventilation is apart of it, however it would not explain how when we go to sleep and wake up - we still feel dizzy. I.E. during our sleep, we generally breathe normally, and upon waking up we wouldn't have low carbon dioxide, yet we are still dizzy.

When I had to do the valsalva test during my TTT exam, I felt really lightheaded breathing deeply. I felt the same level of lightheadedness when they tilted me up. Maybe there is some shared mechanism but I don't think hyperventilation causes POTS.

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Maybe hyperventilation is apart of it, however it would not explain how when we go to sleep and wake up - we still feel dizzy. I.E. during our sleep, we generally breathe normally, and upon waking up we wouldn't have low carbon dioxide, yet we are still dizzy.

When I had to do the valsalva test during my TTT exam, I felt really lightheaded breathing deeply. I felt the same level of lightheadedness when they tilted me up. Maybe there is some shared mechanism but I don't think hyperventilation causes POTS.

The dizziness you experienced is from the drop in blood pressure. When you do the valsalva maneuver you has a sharp drop on blood pressure and then a huge spike when you release the pressure. The same thing happens when you first stand up. The dizziness you experience when you hyperventilate is from decreased co2

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Your heart rate is supposed to increase when your respiration increases...it's the only way our bodies can get enough blood into the lungs to keep up with the increased O2/CO2 transfer. And even a perfectly healthy person would probably feel "dizzy" if a doc made them do that heavy breathing for nearly 10 minutes. My POTS neuro specifically told me to try to control my breathing when I have acute attacks because fast or heavy breathing will make it worse by increasing the heart rate even more. Meditative breathing may actually (and in my case, does actually) bring your heart rate down. It doesn't necessarliy make the other symptoms go away either but the way you are breathing will definitely affect your HR....POTS or no POTS.

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thanks guys for listening and commenting. You all are so knowledagable! maybe i do hyperventilate and not even know it, hmmm. but jangle, i'm with you, that "sleep breathing" as i call it too is all even and deep (mine is at least). so when i wake up in the morning and have to sit on the edge of the bed for a while before standing up because i'm too lightheaded, i don't think that instance is from hyperventilating. this is interesting.

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This is an interesting conversation. Sleep breathing is different than regular daytime breathing. I think the deep breathing we do while we sleep could be one of the reasons we feel so messed up when we wake up. Wish I understood more of the science behind it, but I believe there's a relationship between sleep breathing (and/or the process of waking up) and how our hearts respond to it. According to handy dandy Wikipedia, we need to hyperventilate in order to wake up. See below:

Sleep onset

Set point of ventilation is different in wakefulness and sleep. pCO2 is higher and ventilation is lower in sleep. Sleep onset in normal subjects is not immediate, but oscillates between arousal, stage I and II sleep before steady NREM sleep is obtained. So falling asleep results in decreased ventilation and a higher pCO2, above the wakefulness set point. On wakefulness, this constitutes an error signal which provokes hyperventilation until the wakefulness set point is reached. When the subject falls asleep, ventilation decreases and pCO2 rises, resulting in hypoventilation or even apnea.

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Dysautonomia is the disfunction of the autonomic nervous system, so anything your body usually is supposed to do automatically, isn't working properly. This includes the sympathetic and and parasympathetic nervous systems (which can hardly be contained in a book, in simple terms). This is not easy to understand, especially when the circulation to our brains is compromised by dehydration, (lack of oxygenated blood to the brain)...lol. So just think about it; this includes just about all body systems. When I try to explain it in simple terms to people, who are interested, I go from the top of my head down, and mention all that our body is supposed to do without thinking, heat regulation (pituitary in brain), blinking, tearing, sneezing, swallowing, breathing, heart function, blood flow, elasticity of vessels, blood pressure, endocrine, gastrointestinal and urinary function, muscle and nerve function. It is very complicated, and there are so many doctors who are still researching it all, and don't completely understand it!!

I find myself holding my breath for no apparent reason, so I think we all do this without realizing it, then our bodies, the wonderful compensatory functions that we do have, goes in a panic mode to get oxygen to the brain by hyperventilating. As far as sleeping goes, since we are not awake to realize it, our body wakes us up to breath, gasping to get some O2 back into our system; about 30% of us have sleep apnea, so I would recommend getting checked. I went for 3 years without sleeping properly, and I couldn't function during the day. With my Cpap machine at night, I'm alive again, and much better :) . "Life is not measured by the number of breaths we take, but by the moments that take our breath away." Hilary Cooper

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  • 5 weeks later...

Dr Stewart ran testsed that showed half the patients had Hypercapnia (a condition where there is too much carbon dioxide (CO2) in the blood) (it's important to note that Dr. Stewart did not test patients blood to determine they had Hypercapnia, instead he test the air they exhale). Hypercapnia is one of the causes listed in Wikipedia as causing hyperventilation. The second time I was in the ER they wanted test my my artery blood for o2 and co2 levels. They nurse couldn't find my artery so instead she took it through a regular vein. It cam back normal. So no hypercapnia at time.

There is no scientific testing for hyperventilation, this bothers me. The only diagnosis testing I've read for it is to make the patient forcefully hyperventilate. Find me some clinical research on this so called syndrome where they tested a control group and the control group didn't have a problem making themselves hyperventilate..

I have been using the valsalva maneuver with successfully controlling the pressure in my chest that causes my breathing. I'm trying to figure out how this is helping. It affect a lot of autonomic things both pulmonary and cardiac...

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I personally began hyperventilating during my TTT (within the last 30 seconds, but was breathing fast before that), which I'm sure made things worse and made my BP and HR fluctuate more. But... they were already fluctuating like crazy and I was already pooling before I started breathing fast at all. I don't hyperventilate at all otherwise unless I'm walking up a steep hill, not even if I feel like I'm about to pass out. I'm sure it made my TTT worse but if hyperventilation was the cause for all of my ANS issues I'd sure be surprised :^)

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I personally began hyperventilating during my TTT (within the last 30 seconds, but was breathing fast before that), which I'm sure made things worse and made my BP and HR fluctuate more. But... they were already fluctuating like crazy and I was already pooling before I started breathing fast at all. I don't hyperventilate at all otherwise unless I'm walking up a steep hill, not even if I feel like I'm about to pass out. I'm sure it made my TTT worse but if hyperventilation was the cause for all of my ANS issues I'd sure be surprised :^)

The Hyperventilation Dr. Stewart points to is called Hyperpnea (normal rate ,deep breathing) he actually didn't see any fast breathing increases...

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Yeah - it started with normal rate/deep breathing and then worsened into hyperventilation. Maybe I'm weird? Maybe it's the asthma triggering some sort of reflex? Who knows :^) The fun and joy of a complex and diverse set of syndromes!

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