SeattleRain Posted April 10, 2013 Report Share Posted April 10, 2013 Does anyone have a really hard time breathing, ever? A couple weeks ago my heart started feeling worse and now I have problems problems. I was in the grocery store on Monday and practically collapsed because I couldn't breathe and had to be rushed to the ER (Where they found nothing). I'm getting a resting echocardiogram/bubble contrast study to check for Pulmonary Hypertension next Monday...Just curious to know if others have experienced this - it feels like there's a pressure in my lungs that resists my breathing in... Quote Link to comment Share on other sites More sharing options...
spinner Posted April 11, 2013 Report Share Posted April 11, 2013 Yes, and it can be comlicated if your heart and pulmonary checks out.Be prepared to be told you have anxiety.Factors: food allergies, medications, celiac, asthma, sleep anea, breathing shallow, symathetic nervous system,digestion, leaky gut syndrome, and on and on.You have to do your research and correlate symtoms.The medication klonapin may help you if this is a critical situation Quote Link to comment Share on other sites More sharing options...
jpjd59 Posted April 11, 2013 Report Share Posted April 11, 2013 This is my daughter's worst symptom. She's had everything checked out and the doctors can't figure out why she is having trouble breathing. At least she has doctors now that believe her (some of the doctors at the beginning of all this told her it was just anxiety). Quote Link to comment Share on other sites More sharing options...
SeattleRain Posted April 11, 2013 Author Report Share Posted April 11, 2013 Yes, and it can be comlicated if your heart and pulmonary checks out.Be prepared to be told you have anxiety.Factors: food allergies, medications, celiac, asthma, sleep anea, breathing shallow, symathetic nervous system,digestion, leaky gut syndrome, and on and on.You have to do your research and correlate symtoms.The medication klonapin may help you if this is a critical situationThanks for the response. It seems IMPOSSIBLE to me that something isn't wrong with my heart or lungs. I was on Klonopin (clonazepam) for a week and it did not help... My cardiologist wants me on Florinef and Clonidine after the echo... Quote Link to comment Share on other sites More sharing options...
Angela Posted April 11, 2013 Report Share Posted April 11, 2013 careful with those i would say, one at a time. i so far refuse either, albeit my neuro never brought up florinef i don't think it will benefit me in the long run, same as clonodine which he did want me on. hope all works out just right for u tho so keep us/me posted. Quote Link to comment Share on other sites More sharing options...
SeattleRain Posted April 11, 2013 Author Report Share Posted April 11, 2013 careful with those i would say, one at a time. i so far refuse either, albeit my neuro never brought up florinef i don't think it will benefit me in the long run, same as clonodine which he did want me on. hope all works out just right for u tho so keep us/me posted.I would prefer one at a time but he wants me on both right away Quote Link to comment Share on other sites More sharing options...
Angela Posted April 11, 2013 Report Share Posted April 11, 2013 nah, why? Quote Link to comment Share on other sites More sharing options...
issie Posted April 11, 2013 Report Share Posted April 11, 2013 Rich has terrible issues with his breathing. You might PM him.And agree with Angela ---you need to do one at a time and go very low and slow. It's your body --you decide what to do with it.Issie Quote Link to comment Share on other sites More sharing options...
seattle chris Posted April 11, 2013 Report Share Posted April 11, 2013 Sorry to hear about your issues. I have also felt short of breath recently but it is pretty much isolated in my head as it just feels like I am not getting enough oxygen. I bought a pulse oximeter and it reads normal though. Quote Link to comment Share on other sites More sharing options...
Angela Posted April 11, 2013 Report Share Posted April 11, 2013 don't have a pulse oximeter S.C. but i understand that what our brain is telling us, with "ansd" is not always life threatening.actually, i think they say it is not life threatening at all...ha ha, who says, and who knows since it is still in "infancy". sometimes i feel so awful i check my hr/bp and it is not er condition or even sometimes it is normalish....so why the breath issues? brain cog, body tremors, etc. sometimes it is uber messed up, especially bp. Quote Link to comment Share on other sites More sharing options...
Kellysavedbygrace Posted April 11, 2013 Report Share Posted April 11, 2013 Difficulty with breathing is my scariest symptom. This is not a problem with obstruction or heart/lung functioning (although early on I was convinced it had to be heart/lung related.). I suspect this is a central nervous system issue with two specific symptoms:1. I will forget to breathe, realize it, then have to consciously breathe for a period of time (usually 1-30 minutes) where the majority of my thought process is focused on taking my next breath.2. I feel I'm not getting enough oxygen when I breathe. Although my pulse odometer shows normal readings (as mentioned above) my body feels starved for oxygen. This feels like I'm dying and I have to keep telling myself, "this is just Dysautonomia. I'm not dying. I will be ok."I find this happens when either I'm having a bad reaction to a medicine or chemical exposure or when I'm having a particularly bad sympathetic nervous system crash.Although you should check w the doctor about meds, I agree with the above suggestion of Klonopin. (don't know why you stopped it before but you may consider trying again especially in a low dose multiple times a day.). This helps to stabilize the mast cells (including histamine release,) contol oscillations of the heart and slowly relax the nervous system. Quote Link to comment Share on other sites More sharing options...
Canadiangirl73 Posted April 11, 2013 Report Share Posted April 11, 2013 I get this every now and then, but I'm getting it quite a bit lately. Seems to happen mostly after being upright and having a narrow pulse pressure, but not always. I feel as if my lungs are made of steel, cannot inflate properly, so I can't take a deep enough breath, one that would allow me to get rid of this air hunger. This is one of my worst symptoms. When my dysautonomia started almost two years ago, my GP gave me home oxygen even though my oxygen sat was fine according to the oxymeter. Home oxygen did nothing, so my guess is that signals get lost somewhere between the brain and the lungs. Small fiber neuropathy??? Quote Link to comment Share on other sites More sharing options...
issie Posted April 11, 2013 Report Share Posted April 11, 2013 Look into balance between CO2 and O2. Sometimes the WAY we breathe imbalances that.Issie Quote Link to comment Share on other sites More sharing options...
roxie Posted April 11, 2013 Report Share Posted April 11, 2013 Maybe he's thinking starting both because it takes weeks for florinef to kick in? But still be careful about starting them together. If you have a reaction you won't know which is causing it. When I started clonidine my dr made me do that patch Bc its potent and you never know how much your body will respond to it. It's a long lasting medication (18 hours) and if you react to it you're stuck that way for at least that long. With the patch you can tear it off and the wash the patch area to get it out of your system faster. Once I was settled on the patch we switched over to the pill Quote Link to comment Share on other sites More sharing options...
cmreber Posted April 11, 2013 Report Share Posted April 11, 2013 I was experiencing this a lot, not too long ago. My symptoms were pretty much like Kellysavedbygrace described. (In fact, I believe I started a thread about it at one point and commented on Rich's thread about it as well.) I wasn't quite sure what triggered them. Sometimes, it was when I was having heartburn and I think it was due to that. Other times, it would come on suddenly while in the car, lying down to go to sleep, at a restaurant, etc., and I never really did understand the cause. I changed my med times (I take a BB) and that actually seemed to help, for whatever reason. Also, I lost my grandma at the end of August (she raised me and was my only parental figure, so it was pretty tough) and it all seemed to come on a couple of months after that. Now that time has passed and my breathing stuff has gotten better (though I still get a weird attack from time to time), I can't help but wonder if the stress had anything to do with throwing my body even more out of wack than it already is LOL. So sorry you are dealing with this...it has definitely been the scariest of my issues. Hopefully you can get some answers and/or relief soon! Quote Link to comment Share on other sites More sharing options...
Angela Posted April 12, 2013 Report Share Posted April 12, 2013 cmreber, you mentioned in the car, that's what i experienced when my first major pots flare hit. i couldn't breathe right, and i associate it with the movement and stimuli of surroundings now i get it all the time tho, . Quote Link to comment Share on other sites More sharing options...
cmreber Posted April 12, 2013 Report Share Posted April 12, 2013 Yeah, I'm not sure what it was, but I suddenly couldn't breath and had to turn the radio off so it was quiet, take off my sweatshirt and roll down the window. For some reason the cold air seemed to help. It was scary because I was driving at the time! It happened a couple more times after that while I was driving, and then a couple other times while I was just riding as a passenger. All of the times, quiet and cold air seemed to help. Not sure why that would be. It's interesting it also happened to you in the car. Maybe it was too much stimulation, since turning off the music seemed to help me? Quote Link to comment Share on other sites More sharing options...
Angela Posted April 12, 2013 Report Share Posted April 12, 2013 yeah, windows down, no music. Quote Link to comment Share on other sites More sharing options...
Kellysavedbygrace Posted April 12, 2013 Report Share Posted April 12, 2013 Interesting. I am so hypersensitive to sensory stimuli. I have not associated it with these things before but motion, activity around me, lights, sounds all trigger me for a crash. Next time I'll pay attention to whether or not there was sensory stimuli that is involved. Quote Link to comment Share on other sites More sharing options...
JanaDaisy Posted April 17, 2013 Report Share Posted April 17, 2013 I sometimes feel like I can't catch my breath. Like my lungs can't get all the air I need. But it feels more like my brain is struggling to get oxygen. My o2 Sats are always perfect when this happens. The first dr I saw brushed it off as anxiety, so I am seeing someone else now and getting some testing done, but I suspect it will all be normal... Quote Link to comment Share on other sites More sharing options...
Kellysavedbygrace Posted April 17, 2013 Report Share Posted April 17, 2013 Just had a really bad episode w breathing. 15 mins after lunch out w my son I started having a hard time breathing and thinking. Don't think there was really significant sensory overload as it was a quiet small restaurant but suspect it was a reaction to the food.Half a dozen times after I would have to go into these conscious breathing patterns bc my involuntary breathing simply stopped. It is scary. After an hour lying down I was still struggling to breath but O2 level in finger was fine- quite sure there would have been a different cerebral measure if we could get at that.I'm now in bed crashing. Still O2 hungry but not thinking about the emergency room anymore. I did take a Clonazepam - which is a benzo and since the mast cells have benzo receptors this drug helps to stabilize the mast cell. I suspect mast cell issues likely compound my breathing issues. Quote Link to comment Share on other sites More sharing options...
jaddico Posted July 15, 2013 Report Share Posted July 15, 2013 I've had these symptoms started 16 years ago and had 2 pulmonary function test which were abnormal and know one could figure out why. I end with Asthma ( inhalers does not help)and allergist specialist. My skin testing showed that I have terrible allergies and ended up with allergy shots since then. I will be getting an evalution for MCAS next month since I have neuropathy, terrible allergies, extemely dry eyes with lacrimal duct plugs to helpe me tear, fragrance sensitivity and anormal QSART. My sympotms of shortness of breath, increase heat rate and low BP got worst again during pregnancy. Now I know that my shortness of breath, exercise and heat/cold intolerance are all due to dysautonomia along with other weird skin sensation symptoms. Yes. Anxiety and panic atatck is often the first thing that doctors think of. The automonic nervous system controls breathing and can alter your breathing and heart rate. Quote Link to comment Share on other sites More sharing options...
louloutinks Posted July 17, 2013 Report Share Posted July 17, 2013 I get difficulty breathing particularly in the morning or last thing at night. It's not that I cannot breathe rather that my breathing is very deep and laboured. People often comment on how heavy I am breathing when I am not even aware of it Quote Link to comment Share on other sites More sharing options...
americaneagle32 Posted July 17, 2013 Report Share Posted July 17, 2013 Yes! my biggest issue is feeling like I can't catch my breath. It's as if my lungs can't get enough of it. Maybe try breaking exercises to help. I haven't found a remedy I just have to remind myself to take it easy when I notice I'm breathing heavy. Quote Link to comment Share on other sites More sharing options...
UnderwaterThing Posted July 17, 2013 Report Share Posted July 17, 2013 Yes. I agree that this can be a very scary symptom but I have learned to adapt to it a bit. Before I started taking Verapamil, I could not inhale completely. When I did the TTT, my cardio mentioned that my heart rate accelerated severely every time I inhaled. That has improved quite a bit with the Verapamil but it is still a struggle to inhale. I often wake up in the middle of the night or in the morning breathing very shallow. After I eat, breathing becomes even more of a battle. Breathing is controlled by the ANS, so I'm sure the issues with breathing go hand in hand with other symptoms. I am going to do more autonomic testing in a few months and I'm curious to see what it will show in terms of my breathing. I often don't feel like a human being since it is such a constant battle just to be able to eat, stand, walk, breathe. Hang in there everyone Quote Link to comment Share on other sites More sharing options...
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