Tammy Posted November 6, 2009 Report Share Posted November 6, 2009 I'm a bit concerned as usually I only get this type of symptoms when the weather is humid. The past few weeks on and off, I have times where it's as if there is not enough oxygen in the room and I have to take quick shallow breaths and really focus on breathing. It's not really shortness of breath, but more like my oxygen just isn't enough. Anyone else understand this or experience this also? It has me kind of concerned that something else is wrong, but I think this is one of the symptoms I've heard of us having.Thanks Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted November 6, 2009 Report Share Posted November 6, 2009 I get this at times. For me it is fairly random, although I do notice it especially on hot humid days. Quote Link to comment Share on other sites More sharing options...
dsdmom Posted November 6, 2009 Report Share Posted November 6, 2009 I get something similar - it feels like I can't get a complete breath in. I hate this symptom more than any others. It has gotten better for me over the years but right now it's flaring and I don't really know why. It's not hot nor humid here right now! Quote Link to comment Share on other sites More sharing options...
lissy Posted November 6, 2009 Report Share Posted November 6, 2009 This condition affects your involuntary functions-----breathing, swallowing,muscles ,fight or flight responses, blood presssure, heart beats.This probally whats probally going on . I get that feeling and I usually lay on my stomach and take some deep breaths , I also use a fan alot it calms me and I always feel better cool. Lissy Quote Link to comment Share on other sites More sharing options...
erik Posted November 6, 2009 Report Share Posted November 6, 2009 I have bouts of this feeling. Its like being "on edge" with breathing... I will get sudden suffocation panic simply from taking a long gulp of water. Haven't had it in a while, but it comes and goes. Keep in mind that the impulse driving breathing is more related to expulsion of CO2 than intake of oxygen... so I've wondered if I have gone mildly acidic or if the sensor (as in the hypothalmus) gets out of whack (the hypothalmus is central to so many autonomic regulations). Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted November 7, 2009 Report Share Posted November 7, 2009 Yeah, decreased blood flow to the brain, over reaction to the baroreflexes and maybe postural hypocapnia. Quote Link to comment Share on other sites More sharing options...
Tachy Phlegming Posted November 7, 2009 Report Share Posted November 7, 2009 The article below would suggest that anything that causes you to have a high heart rate (orthostatic stress) could cause you to feel that you can't breathe although I've got to say, I mostly get the problem only in heat and humidity too ...http://stroke.ahajournals.org/cgi/content/full/29/9/1876-------I have some questions about the article. (I haven't spent too long on it so maybe I'm missing something right off the bat.)It seems to state that we get overbreathing when subjected to the limit of our orthostatic stress. But don't people without dysautonomia? http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2442822/Or am I missing something? I mean there are a lot of big words in that first article and it sure sounds like cutting-edge research but I thought what is unique about us is that we have the problems with less orthostatic stress. Also, I need to breathe cold dry air to breathe properly. When I am covered with a blanket, my breathing is still okay as long as I'm breathing in cold dry air. I'm also ok on an airplane with a nice oxygen tank. The same phenomenon works in the people out in the real world when they have too much orthostatic stress, right? Or in the logic of the article, (administration of oxygen to them) lowers heart rate which then lets them breathe normally. They do bring oxygen to normal victims of heat stress and when airplanes lose pressure right? (Sorry, I live in my own little world where I don't get oxygen for heat stress and people think I have an emotional problem when I fly and have to ask a stewardess for an oxygen tank so I wonder about what they do for normal people).They hint in the article that people with dysautonomia should all be hanging out with an old bag instead of an oxygen tank. (CO2 rebreathing is usually accomplished with a bag for those who missed the reference).http://www.springerlink.com/content/h2130231l14262j0/http://www.thefreedictionary.com/old+bagAnd I don't understand why they are mentioning panic disorder in this discussion of dyautonomia. I mean "normal" people get this when they experience orthostatic stress right?.From where I sit, I am starting to wonder whether ambulances supposed to carry paper bags for "normal" people experiencing heat stress. And a psychiatrist along for the ride so the "normal" person in the ambulance can discuss everything else but how they can't breathe and their heart rates are high. ------As far as what I've been doing lately for the breathing problem: When I can't breathe properly, nicotine spray regulates my breathing within 40 minutes and my one-time trial of Huperzine A seemed to work too. Quote Link to comment Share on other sites More sharing options...
Stormie74 Posted November 7, 2009 Report Share Posted November 7, 2009 I find at times I will need to "have a talk with myself" and force myself to breathe long, slow deep breaths for awhile. Controlled, slow breathing helps me to relax instead of go into a breathing panic. Also, cool, drier air is also best for me. I can't sleep with my nose under the blankets... I feel like I am suffocating! Quote Link to comment Share on other sites More sharing options...
erik Posted November 8, 2009 Report Share Posted November 8, 2009 Hmm... well, mouth-to-mouth with an old bag wasn't part of my normal game plan, but if it helps with POTS I'm willing. A chronic illness has a way of changing a guy's priorities. Tachy, you're a fun one to read. You blend your fun and useful insights well! Quote Link to comment Share on other sites More sharing options...
vemee Posted November 8, 2009 Report Share Posted November 8, 2009 I have times when I can't take a deep breath and have to make several attempts before I can get one. Usually I am not doing anything but sitting when this happens. I have no idea what causes it.Just slightly off subject, how many people here suffer from low ferritin levels that are unexplained and also have red blood cell levels that are above the normal limits? I have a theory that those who pool heavily have low ferritin levels because the body is not being supplied with enough oxygen due to the pooling and is reacting to the hypoxia by overproducing red blood cells thus depleting the ferritin level. Of course that is not based on any medical evidence that I know of so it is probably not valid. Quote Link to comment Share on other sites More sharing options...
delphicdragon Posted November 8, 2009 Report Share Posted November 8, 2009 Interesting topic. Last tilt table test I had (which was inconclusive - grumble) when they first tilted me up, my heart rate immediately jumped to 150 and starting climbing higher. I got severe chest pain and "oxygen hunger" aka I was having a lot of trouble breathing. I was lowered back down and given 3 liters/min oxygen and allowed to rest for a bit before I was tilted again. This time, on the oxygen. With a nurse coaching my breathing, my heart rate maxed out at 147, which was not high enough to make the tilt table test positive. (Started with a baseline of 120) I've always wondered since then if I should be on supplemental oxygen, as the chest pain decreased substantially on the oxygen. I'm also a little miffed that no note was made in my chart about me needing the oxygen either. :-(Maybe I should bring this up with my doctor, but after that event I stopped seeing the autonomic specialist and am being primarily treated by an endocrinologist. Sara Quote Link to comment Share on other sites More sharing options...
Tachy Phlegming Posted November 8, 2009 Report Share Posted November 8, 2009 Ha Sara!!!!!There it is. All those points summed up in your experience where they have your two heart rates recorded on oxygen and without. That's why we all wonder the same thing about oxygen ...Thanks Erik. Sometimes people don't love my humor so it's nice to have a fan (helps me to breathe). Quote Link to comment Share on other sites More sharing options...
goldicedance Posted November 9, 2009 Report Share Posted November 9, 2009 This is a very interesting question. I am always really short of breath when I walk, go up steps- you all know the drill.I also have asthma.Last year I had a series of pulmonary function tests at the Mayo Clinic. One involved measuring O2sats and HR. I was sure my oxygen levels would be dropping, but that was notthe case. My HR didn't go very high because of the cardiac ablations I have had.At least the test showed that m o2 levels were ok.Have any of you had those tests?Lois Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted November 10, 2009 Report Share Posted November 10, 2009 CO2 rebreathing would only work in those few with hypocapnic normal flow POTS. Quote Link to comment Share on other sites More sharing options...
JennaC Posted November 10, 2009 Report Share Posted November 10, 2009 I have had an extensive pulmonary work up since I thought I had asthma when my symptoms started. My O2 sats drop with a sharp increase in hr. We did an informal jog up a few flights of stairs when I first got a prescription for O2. Without O2 I went down to 82% O2 and a hr of 160 something. With O2 my sats only dropped to 94% and I thing my hr only went up to 140.They did a test giving me 100% O2 for 20 minutes with an ABG and my lungs are able to fully oxygenate my blood. They did all this to rule out shunts... Quote Link to comment Share on other sites More sharing options...
Jen2533 Posted November 10, 2009 Report Share Posted November 10, 2009 My POTS causes blood pooling, which lowers my o2 sats, my cardiologist told me to lay flat with my feet elevated for a half an hour when this happens. I did this and wore my pulse oxymeter and my o2 went back to normal and I felt better. The only time I can't do that is when I get the POTS symptoms post eating as it causes severe reflux which causes heart burn, and on, and on. HTH.Jen Quote Link to comment Share on other sites More sharing options...
Tachy Phlegming Posted November 10, 2009 Report Share Posted November 10, 2009 Ramakentesh, are you suggesting that the patients they used in the study all fell into the category you delineated in this thread? It wasn't in the article yet they all got back to baseline -- at least according to the article.Could you please write out a step-by-step description of why you wrote what you did and why other categories of what they called "OI" would not have gone back to normal with CO2 rebreathing? Quote Link to comment Share on other sites More sharing options...
mountain girl Posted November 10, 2009 Report Share Posted November 10, 2009 I have times when I can't take a deep breath and have to make several attempts before I can get one. Usually I am not doing anything but sitting when this happens. I have no idea what causes it.Just slightly off subject, how many people here suffer from low ferritin levels that are unexplained and also have red blood cell levels that are above the normal limits? I have a theory that those who pool heavily have low ferritin levels because the body is not being supplied with enough oxygen due to the pooling and is reacting to the hypoxia by overproducing red blood cells thus depleting the ferritin level. Of course that is not based on any medical evidence that I know of so it is probably not valid.I don't understand everything about your theory, but yes, dr. just found out my ferritin level was low 7. Norm 10-291, but I thought he said he doesn't like to see it less than 40. I am not sure about the red blood cell count. I often feel like I can't breathe and like the fan on or nice cool or cold outside air. Quote Link to comment Share on other sites More sharing options...
tjanzing Posted November 11, 2009 Report Share Posted November 11, 2009 Last time I was in the hospital--about 6 weeks ago...they put oxygen on me even though they said my oxygen levels looked fine and I felt so much better..much less faint and more clear with thinking. I was diappointed when they took it off. Wished I could always have access to oxygen when I feel that way. Have found all your insights very interesting! Quote Link to comment Share on other sites More sharing options...
vemee Posted January 8, 2010 Report Share Posted January 8, 2010 My little theory on ferritin levels posted above is totally wrong. I don't know how I got the idea that ferritin is used to build blood cells. Sorry Quote Link to comment Share on other sites More sharing options...
erickamcc0523 Posted January 8, 2010 Report Share Posted January 8, 2010 When I feel O2 deprived (and I do quite a bit), I can't take in a full breath... Sometimes it helps to hold a pillow or something soft to my chest, and squeeze it (my chest, sort of like I'm hugging myself), and breathe out as much as I can. Sometimes, I'll sit down at a table, and sort of press my forearms against the edge for a little extra leverage... It's surprising how much I can exhale!! The next few breaths will calm the deprivation symptoms quite a bit, though there have been times that I've had to repeat it after a few minutes. Sometimes (especially when I have a cold or bronchitis), I'll cough some, but only a few times. I'm not sure where I picked this technique up, but I'm glad that I did, because sometimes it's the only thing that helps. Quote Link to comment Share on other sites More sharing options...
ByteMe58 Posted January 9, 2010 Report Share Posted January 9, 2010 I had a physical therapist that tought me to breathe like thisIn through the nose slowly, while she said smell the rosesOut through the mouth hard, while she said blow out the candlesWell, I started to feel like I was passing out anyway, I had to lay back down, she said what happenedand told her I think I smelt candlesFrank Quote Link to comment Share on other sites More sharing options...
Tachy Phlegming Posted January 9, 2010 Report Share Posted January 9, 2010 Good for you Frank! There was a doctor who administered a drug to me and then told me to breathe slowly when I told him I was on the verge of fainting because of the drug. Happily, he didn't ask me "what happened?" when, for a few minutes, I couldn't even think about anything other than what would happen if I lost consciousness (and therefore didn't do what he said).Here's a dysautonomia war song about the disappearance of your flowers and what happens to young women (well maybe that one isn't quite accurate), men, and soldiers when they can't breathe. (The refrain ["when will they ever learn?"] obviously, is for the doctors ) :http://www.arlo.net/resources/lyrics/flowers-gone.shtml Quote Link to comment Share on other sites More sharing options...
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