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I'm Pretty Sure My Oxygen Problems Are From Dysautonomia


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Sorry, I didn't know what to name the title. I figured out on my own why my oxygen is messed up and causing seizures, dysautonomia. That sounds really silly since I'm on this forum, but I kept thinking that something else was causing my oxygen to be messed up and I didn't know why. Then I remembered that my dysautonomia is a lot better when I take stimulants, and I realized that even my breathing is much better. I was doing better when they had me on adderall but they stopped me because they were too scared it would make me worse despite it making me feel better. I took a stimulant the other day and checked my oxygen in the gym and went on the machine that made me the sickest and the lowest my oxygen dropped was 93 and it didn't stay there and was averaging 95. That's incredible considering it likes to drop to the very low 80's when I do physical activity normally. I realized that my oxygen problem had to be dysautonomia related too.

Obviously respiration is a part of the autonomic nervous system but I don't hear too many people on here complain about having problems with it. Do you guys have problems with respiration? If that's the case will oxygen still help me if it is just dysautonomia?

Does anyone know the basis behind why stimulants work for people with dysautonoma? I don't have blood pressure problems and it works for most of my dysautonomia symptoms. I know it activates the sympathetic nervous system. Is that why?

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I cannot speak for you, but I can share my experiences.

A lot of us have episodes of shortness of breath. Some more than others.

I have episodes that I would describe as other than typical. It can be when I am relaxing to sleep, or soon after waking up. It can be when I am especially relaxed during the day. Most frequently it is in the morning, soon after I wake up.

I seam to have a reduced drive to breathe. The description would be similar to what some might experience having had too much of a narcotic. I know that there is something to it, because I have watched my O2 go from 98 to 90. Even to 88, 89 before. I can fail to breathe in the sleep transition. What has been frustrating is that the spells are episodic. I have failed to prove this problem. I have ad it dismissed at Mayo, and other places. Only the local pulmonologist that knows me is working with me on this. I need to prove it though. Everything is based on test results.

I have never seen any evidence of anxiety dropping O2 levels. Maybe I am wrong, but I never feel anxious when I am that tired.

Overnight oximetry showed my 02 at 90%. A sleep study sowed my O2 @ 90%. When I am especially relaxed, I have a reduced drive to breathe. More than normal. When I am tired, and I often am, it feels like a switch is flipped. I go into a different breathing pattern, and it is difficult to tolerate.

If I was at my worst every day, I could get help. The good and bad of it is that this problem comes and goes.

I have had no qualified insight into this problem.

Another point that I thought was interesting was that I was diagnosed with COPD at Mayo. The irony was that the same testing showed my lung capacity to be "super normal" a year ago. I am doubting that I developed COPD in that time frame. I do not think you go from super normal to bad in that time frame.

So to sum it up, I am not surprised to hear someone say that a stimulant has improved their O2 levels. For me, I do not have the problem when I am stimulated.

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Many people with dysautonomia cannot tolerate stimulants. I have POTS and stimulants make my heart beat faster which makes me worse. However, they can also increase your blood pressure. Maybe that is what is helping.

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When my son was born, he was premature and required resuscitation and a ventilator for several days. After he came off the ventilator, the docs gave him caffeine for his apnea/bradycardia spells. It's a common treatment for preemies with apnea. I suspect other stimulants would have a similar effect.

"Caffeine is believed to act in the brain by increasing the respiratory reflex to carbon dioxide and also by augmenting the ability of the diaphragm to contract during breathing." http://www.uq.edu.au/pharmacy/new-caffeine-treatment-for-premature-babies

I couldn't tolerate coffee until about a year after getting sick, but began drinking it again after I started having strange 'sleep attack' type (sudden need to sleep immediately through the day) issues. I now use Wellbutrin - which for me acts like coffee - only lasts longer :). I don't have breathing cessation type/apnea issues anymore and this med raises my resting bradycardia HR and my low BP. I could see that it may be an issue for people with higher resting HR's or BP's.

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@yogini My blood pressure is one of the few things that are pretty okay for me. It use to be really messed up but around the time I started working out and going to the chiropractor it became somewhat normal, not normal normal, but not dysautonomia level. If that makes sense. I heard of people using like adderall and stuff for dysautonomia in some cases and having it help, and like you said in some cases it makes it worse. Everyone's individual. No it is clearly helping my oxygen as well as everything else because it kept my oxygen from dipping into the low 80's.

@gjensen mines not really like the effect from benzo's on the respiratory system or anything like that. When I do physical activity it goes low. All but one of my seizures were after going up or down stairs. I hope you figure out what's going on though. I understand the frustrating with their being something wrong with your body and having to try to prove it.

@AllAboutPeace Wow. That's very interesting. Glad that your son is okay now. The funny thing is I have a high resting heart rate so that's part of the reason people are scared to give me stimulants but it makes me feel better and I can't explain it. I just know that when I have stimulants it makes all of my symptoms much better both physically and on tests (like how it keeps my oxygen in the 90's instead of going in the 70's and 80's.) Maybe if they figure out why stimulants work for me they can figure out more of what's going on

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It is hard to know whether the dysautonomia is causing your low O2 or the other way around. My O2 is normal at home, but when I go to a high altitude where there is less oxygen my HR is much faster than "normal".

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I have noticed for myself that my blood pooling causes both my heart rate to increase and a feeling of not enough air in my breathing. I start trying to deepen my individual breaths to no avail and end up sitting on the floor for awhile. Lol. I believe for me it is caused by the blood pooling as my compression socks seem to help it quite a bit. I have just heard of the term hypoxic seizures. Is this what happens to people when their brain is lacking oxygen? I don't have this but I thought of you when I heard it.

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@Raisin yes, that is exactly what happens to me. When the feeling of not getting enough oxygen gets too intense and lasts for a few minutes I will turn blue and have a seizure. It's a very awful feeling and it's awful for my body. Mine doesn't seem to be caused by blood pooling although that happening does make me dizzy but the cause of all but 1 of my seizures (1 of them I was just laying in bed awake and all of a sudden couldn't get enough oxygen which makes no sense considering how most of my seizures are. That was also a double seizure.) were caused from the stairs because the stairs make it harder for me to get oxygen more than other activities I have to do. I get sick from other thing and lose oxygen, but nothing like the stairs. Everyone with dysautonomia knows the stairs are evil though lol.

@yogini no it's def. part of the dysautonomia. I don't go to the mountains or on planes or anywhere where there is less oxygen because I have so much trouble as it is.

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What I meant is that you could have something else in your body causing low oxygen, and then the fast heart rate is a symptom of low O2. I believe seizures are also a symptom of hypoxia (low O2). I have no idea - it could be caused by the dysautonomia too, but many of us with dysautonomia have all of our tests come back normal. Though some here have seizures and low O2, those aren't the most common symptoms. Also lots of people on the forum have co-conditions and so it's hard to tell what is caused by dysautonomia.

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Yes, the seizures are from hypoxia. I had all of my tests at the pulmonologists come back normal and I really believe it is the dysautonomia causing the low oxygen. It makes since considering the autonomic nervous system controls respiration too. I know what you mean about the co-condition part. It's really hard when listening to someone trying to figure out if there symptom is from dysautonomia or the thing that caused the dysautonomia. It's all so confusing and individual. Too bad we all couldn't get a normal condition that people have heard of and know how to treat.

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There is a difference between breathing problems (02 deficiency) and STRUGGLING to breathe. MD's dont make that distinction.

The muscles that work our autonomic breathing are not meant to be noticed. But when you flare, you get exhausted trying to

breathe.

We need to be hyper aware of what we eat and what chemicals we ingest. Can inhibit breathing, particularly histamines,

gluten, MSG, aspartame, and anything allergic.

Also, apnea is a major problem, undiagnosed. Can cause autonomic breathing problems. BIPAP may be needed after sleep test.

Sleeping on your back is generally bad.

Breathing warm air can make it worse.

Breathing too shallow in the diaphragm is bad, as is stress, adrenaline, suppresses the easy feeling

of breathing.

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@spinner They already checked me for sleep apnea although I haven't gotten the results back yet. I sleep on my side. So the muscles could be too tired to function? Would that be why it happens when I'm doing physical activity?

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