Blood Oxygen Levels And Breathing Poll

[Lethargic Smiles]

I have noticed it often seems like I cannot get a deep enough of a breath. It is almost as though I am breathing through a straw. However, my oxygen levels are amazing! They are always above 98%. The other day, I was symptomatic and dehydrated enough for an IV of saline, and they were 100%!

I was shocked and am wondering about your guys experiences.

[Chaos]

I had this explained to me when I had some exercise testing recently. My O2 sat never dropped out of normal range but my VO2 max showed that my muscles aren't utilizing the oxygen so I'm just exhaling it right back out again. I was watching some videos by Dr. Cheney who was saying he has over 50% of his patients who can do a maximum breath hold and they never desat- which is abnormal. Apparently 6-7 percentage points is a normal amount to de-sat when you hold your breath as long as you can. When I test this on myself I don't drop at all.

The theory is that some of us have lost the ability to utilize the oxygen effectively that we are getting into the blood stream. Our lungs are doing an ok job getting the O2 in there, but then either because of a mitochondrial issue, or perhaps some other reason is keeping the oxygen from being un-coupled from the hemoglobin once it gets where it should be.

[AshleyPooh]

This is interesting and I just posted a topic similar to this. I have good oxygen, but low CO2 levels. I believe the low co2 is where my breathing symptoms come from. If anyone has gotten their blood gasses checked, look at your co2 levels and see if they are below normal. Also look up symptoms of low co2, they are very similar to that of low blood pressure

[TCP]

I sometimes to to do my deep breathing but the restricted feeling in my chest because of nerve damage and its affect on the muscles makes it feel like I am struggling. It has improved since I was put on a beta-blocker, but I do avoid bending forward or reaching up with my arms as this messes everything up. Any light exercise leaves me breathless with my heart pounding. Nothing is as easy as it was.

I've never had any oxygen levels checked and have been pretty much abandoned by specialists regarding the POTS/PN/AN etc.

[Freaked]

Great poll; two very interesting things here imo.

One, if you find that you're short of breath and your oxygen levels are fine but your carbon dioxide levels are low, that's hyperventilation. It's common amongst sufferers of fatigue disorders; the body seems to overcompensate by breathing too much. Our fast heart rates will also automatically make us more inclined to hyperventilate - your body is used to heart rate and breathing rate working in conjunction.

Two, Chaos, that's intriguing. I noticed during my pulmonary function test that, even when I was totally out of breath and dizzy, my oxygen never went lower than 96 or 97. It's often at 100. Inefficient oxygen metabolism would in fact explain...basically all pots symptoms, afaik. I hope some docs are looking into this somewhere.

[Chaos]

Ashley- I've had both low and high CO2 levels on my labs. I think Julian Stewart has done a bunch of research looking at hypo/hypercapnia (CO2) relative to POTS. I've been trying to figure out it's relationship in my own case for a long time but haven't been able to make much sense of it yet. Even my exercise testing showed abnormal O2/CO2 ratios/evels but they also weren't able to definitely put a cause to it.

[AshleyPooh]

this is pretty interesting. I always say " i don't hyperventilate", because I don't have anxiety attacks that cause hyperventilation. However, sometimes when my blood pressure messes up, I feel like I can't take in deep breaths, and when I try my lungs sort of protest it. Also sometimes the fatigue makes my breathing slow down, to where I kinda breathe in small short breaths. maybe this is the reason for the co2 readings.

I will ask my cardiologist about this next time I see her. My tilt table test is on Monday, and just can't wait to get this over with. For some stupid reason , I am afraid that I won't fail the tilt test. Like I'm worried I'll get there, do the test, and react fine to it. I say this is stupid b/c I react badly to posture and standing up on a daily basis, but I guess I'm just terrified of not getting a diagnosis or answers , or treatment! I'm on a deadline, as I'm working through a charity to get this paid for, so I fear that if I don't find out what's wrong soon, I might never find out.

Meanwhile, I've discovered that other people who don't see me on a daily basis, do NOT understand what the heck i'm talking about. I keep getting things like " maybe if you moved around more, exercised some etc etc", as if I enjoy laying around not doing much. I'm 26! If I could exercise, believe me I would!!

Sorry, non related ranting just kinda burst out of me :/

[Lethargic Smiles]

This is all so interesting. My situation of not feeling as though my breaths are adequate but my oxygen levels being fine seems to be a common issue. Before I share my thoughts, I am going to tell you my brain is foggy so please be forgiving.

Chaos -- That is all really interesting. Thank you for sharing! It sounds like you are on to something with your abnormal O2/CO2 ratios... too bad they cannot identify a cause.

Freaked -- Are you saying that the rapid/inefficient breathing is the body's response to tachycardia? My understanding of breathing in relation to heart rate when someone has tachycardia is different than this, but I may be mistaken as I didn't spend a ton of time on researching it. It does make sense they would be related and I do notice many people with POTS being told their rate of breathing indicates they are hyperventilating.

TCP -- I'm so sorry you have been abandoned by specialists. I found many specialists in my area just didn't know what to do with me, or they would act like they did and I would find out their recommendations were complete wrong... It was such a frustrating experience. Ever since I went to Mayo Clinic, my PCP helps me follow the plan given to me by Mayo doctors. When we hit a road block or are unsure of if a symptom is due to POTS or how a medication will effect my POTS, we give them a call. I like that she isn't too proud to reach out for guidance.

Ashley -- It took a long time for people to understand what is wrong with me and I can relate to your frustration. There were times when someone would suggest exercise, I wanted to sarcastically say, "Really!? What a WONDERFUL idea, I've never thought of that!!" and slap them. I stuck it out, and now people in my life tend to understand why I cannot exercise in the same way as everyone else. I explain how my body is stressed by being upright, so it is important all exercise is horizontal. I explain how my body is fatigued from the rapid heart rate and battling gravity all day and all that jazz... The ultimate silencer has been that ever since I went to Mayo Clinic, I can say that and people kind of shut up because most people sort of bow down to Mayo. I'm happy to report that the instances of people suggesting interventions has been much less since I started my blog. My whole family (extended family included) reads it and takes it to heart. At our last family function, everyone was scolding me to lay down and not be in the heat too long. I am really lucky (not to rub it in!).

I wonder what supplements help support our cells using oxygen properly? I've noticed a difference since I started using d-ribose. It is said to help our body recycle ATP (the fuel source for our cells) more efficiently. I have no idea if that has anything to do with our cells utilizing oxygen.

As you may or may not have seen other places on the forum, I am going to The POTS Treatment Center (in 2 weeks!!) where they focus on breathing exercises to control the ANS. I will spend a couple hours a day for two weeks hooked up to machines measuring oxygen levels, muscle tension, pulse, blood pressure, and maybe brain waves... I wonder if breathing differently can impact how our cells are able to utilize oxygen?

How does one go about finding out their CO2 levels?

[Chaos]

When I worked in a hospital I was talking to a pulmonologist who said they had equipment you can use to measure CO2 levels. Nurses said they had them too, but they were kept under lock and key as they were so expensive...not like O2 sat monitors. Otherwise CO2 levels are measured by blood gases I believe. Mine were measured on the CardioPulmonary exercise stress test I had done where I had to wear this huge mask thing over my face the whole time I was doing the exercise task so it was analyzing all the gas exchanges etc.

While I know that hyperventilation can be a cause of low CO2 levels, I know for a fact that I was NOT hyperventilating some of the times (and the nurses with me agreed that I wasn't) when I had those low CO2 levels.

On a related note, in Dr. Cheney's video he addresses how barometric pressure changes can affect our breathing issues to some degree. He was saying with the pressure dropping the O2 gets less concentrated in the air, so we tend to breath faster (which would be more like hyperventilating) and thus may make us more symptomatic. He was saying CO2 is the primary inhibitor of peroxynitrite (which is the "Worst", "most toxic" free radical known to mankind). By hyperventilating and lowering our CO2 levels, we remove one of the primary inhibitors to peroxynitrite formation. Peroxynitrite once formed takes nanoseconds apparently to kill/destroy any tissue it comes in contact with. So he was recommending trying to keep breathing as slow as possible most of the time as a general rule of thumb.

While I firmly believe that controlled breathing can have a very beneficial impact on the ANS (and in fact I've experienced that many, many times with my yoga breathing practice), I haven't found it to be able to overcome all the POTS symptoms. Tried it for the first 6 months pretty much exclusively when I became ill without much success. Did biofeedback years ago as well (long before POTS) and while it was helpful, again, I'm not sure that for me, where I am with all my symptoms now, that it would be enough. But everyone is different so hopefully it will be just what you need to get you back on your feet and back in the game of life!

[Suthrngal]

Jackie keep us updated plz. And which doc did you see at MAYO and which clinic.

[Lethargic Smiles]

The autonomic neurologist I saw, Dr. Fealey, was at Rochester Minnesota. I had a good experience with him and also with the cardio electrophysiologist whose name I will have to look up. I will definitely keep everyone updated!

[Mike83IRL]

Has anyone tried the Buteyko Method in relationto POTS/OH symptoms?could by an interesting way to experiment safely at home with thus Oxygen/CO2 theory.

[BSmith85]

Often feel as if I can not achieve a "full" breathe. I almost don't recognize this as abnormal since it's been an issue since I was 17 (29 now) but I faintly recall what it was like to take that full, satisfying inhale/exhale. Weird thing is it seems to be most severe at random times of rest & really not as prevalent during my most intense moments of work/exercise.

[Chaos]

Wasn't familiar with Buteyko Method so looked it up. Doesn't appear to be much different from some of the pranayama patterns in yoga from what I could tell. I have done those patterns to experiment with POTS symptoms and it's not helped usually other than being relaxing. Certainly not curative.

[Bigskyfam]

My pulse ox always surprises me. 100% on the elephant on chest days

[edriscoll]

I too have experienced great oxygen levels during times when I feel as though I am having a lot of trouble breathing. BsSmith85's description of not getting that "full breath" is right on! I have been describing/complaining about this for years. Since I also had a pretty radical scoliosis curve that compromises my chest cavity, this feeling was always blamed on "restricted breathing". I have had two surgeries correcting the spinal curve and I still have the same breathing issues. In fact, they have gotten worse as the Dysautonomia symptoms have gotten worse. So I now believe that this was the issue all along. It is so great to hear fellow sufferers reporting the same symptoms - makes me know that I am not crazy...or alone. Thanks for sharing.

[Nymph]

I'm the opposite. I am rarely short of breath, but sometimes I have reall low O2 readings, like 88, 89. That only seems to happen at the doctor, though. I have a little pulse oximeter at home and it's always normal. Weird. This is an interesting discussion, though.

[angelloz]

I would describe my breathing a bit differently. I feel like I can breath deep enough , especially if I concentrate , but it takes a lot of effort. It feel like I have to do all the work and it is not happening automatically with ease. At times I do get the feeling that I can only pull in a shallow breathe.

[angelloz]

One more thing to add...a couple of times during a bad episode I was breathing but had the sensation that it wasn't doing any good. It felt like my body was craving and needing air but the air I was breathing wasn't getting into my body correctly...a very awful feeling.

[krystalsmmns]

This is interesting. I've only had mine taken twice in the last 3 months. One was 95, the other was 100. My greatest complaint before finding out my heart was racing was shortness of breath and not feeling like I was getting enough oxygen. The strangest thing that I never spoke of before in the last few years is that I would get caught up in thinking about my breathing and it would take me forever to get my sub conscious to take back over. It happened so often that I would think, crap not again. Also, I have blood pooling in my hands and wondered if the max oxygen level represented oxygen flow throughout my body or just in my fingertip. How does that work anyways?

[Katybug]

Oxygen saturation measures the actual oxygen levels in you blood (how much oxygen the hemoglobin is bound to). However, it is not an indication of how much blood is getting to your vital organs and your brain. If you are experiencing thoracic or cerebral perfusion from blood pooling in your lower extremities, vital organs can still be getting less oxygen than they need to function optimally.

[krystalsmmns]

Thank you Katybug

[Guest ANCY]

This is a very interesting topic. when I first started having symptoms 4 years ago I had unexplained oxygen levels in the 70s at times but it would only last a couple minutes and then it was normal. Ended up on oxygen for almost 2 years. (with a 3 month break when I went to sea level) Finaly got in to see a Pulmonologist who said I did not need to be on oxygen, the reason for Pulse ox readings being "off" was that when my blood pressure drops low I don't have adequate profusion to my hands for it to read correctly. He said that the shortness of breath was most likly because of how fast my heart rate goes and that there is not time for the blood cells to make an adequate exchange of oxygen/carbon dioxide. Go figure! (Also sent me for a sleap study and discovered i have sleep apnea) So two years of needless tubes and heavy bottles transported around, I was certainly glad not to have to lug it around anymore!

[spinner]

Oximetry does not measure the effort level of breathing.

When you talk to a Physician, always say "im struggling to breathe" rather than "i cant breathe" because

they will always respond "the numbers are good, you are breathing fine".

With DA we are talking about a neurological disorder with wide ranging side effects.

One of these is that you struggle to breathe the same way you did before, which is to say, you dont think about it.

Your autonomic system uses a system and series of muscles that you are now aware of-------

For this reason IMHO you should always use a Neurologist to be treated.

Medications can really help. Klonapin saved my life because it took away that "breathing through a straw" feeling.

Other things to make sure you do are deep breathing patterns.

A lot of people need sleep tests too. Apnea can stifle your daytime breathing effort-----believe me.

A lot of people get on cpaps when they need bipaps (because most apnea is actually upon exhale not inhale).

You have to cover every base.

Food intake, and type is crucial. Digestion can interrupt breathing.

Cold air, less humid can also help.

Send me an IM if i can help in any other way. Ive been down this road.

I have noticed it often seems like I cannot get a deep enough of a breath. It is almost as though I am breathing through a straw. However, my oxygen levels are amazing! They are always above 98%. The other day, I was symptomatic and dehydrated enough for an IV of saline, and they were 100%!

I was shocked and am wondering about your guys experiences.

[RichGotsPots]

Hey spinner, long time