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Waking up with breathing trouble
Hello,
When I was in the hospital last month for elevated lover counts, I had an episode of what I believe was paroxysmal nocturnal dyspnea. I woke up in a total panic, unable to breathe and had to get up to breathe again. I believe it happened about four times in a row. I told the hospital staff and they repeated my chest X-ray, which came back normal both times.
I had an EKG while in the ER (before admitted) and was not told results; I assume they were OK.
Since released, I am still having breathing problems at night. I was awoken twice like I was in the hospital and also wake up but not as dramatically. The less dramatic episodes involve waking up and having to adjust my position to breathe better.
Considering my my strong family history of heart disease, should I call the doctor? Because I see the doctor for a lot of things, I don't want to bug them unnecessarily, especially since the CXR came back OK.
Please advise.
Thank you,
K
When I was in the hospital last month for elevated lover counts, I had an episode of what I believe was paroxysmal nocturnal dyspnea. I woke up in a total panic, unable to breathe and had to get up to breathe again. I believe it happened about four times in a row. I told the hospital staff and they repeated my chest X-ray, which came back normal both times.
I had an EKG while in the ER (before admitted) and was not told results; I assume they were OK.
Since released, I am still having breathing problems at night. I was awoken twice like I was in the hospital and also wake up but not as dramatically. The less dramatic episodes involve waking up and having to adjust my position to breathe better.
Considering my my strong family history of heart disease, should I call the doctor? Because I see the doctor for a lot of things, I don't want to bug them unnecessarily, especially since the CXR came back OK.
Please advise.
Thank you,
K
Thanks for the update. Asthma is another condition that is known to be comorbid with gluten intolerance. And no, you don't have to have celiac disease to be gluten intolerant. The two are related, but you can have gluten intolerance without having celiac disease. Everyone who has celiac disease has gluten intolerance, but not everyone who has gluten intolerance has celiac disease. I personally have non-celiac gluten intolerance. Non-celiac gluten intolerance can be extremely hard to diagnose. Allergy skin testing for wheat can be negative, and all of the tests for celiac disease can be negative, and you can still have gluten intolerance
Since you've already been tested for celiac disease and wheat allergy, and have been found negative for both, the best test for you to rule out nonceliac gluten intolerance would be to simply go on a gluten-free diet for at least a month (six months would be better) and see if your symptoms improve. There is a lot of cross-reactivity between gluten and casein, which is milk protein, so you are more likely to see a quicker difference if you also eliminate all dairy products. If you can't eliminate all gluten and all dairy at the same time, it is fine to just start gradually peeling away problem foods one at a time.
In my case, I first started eating less bread, but I didn't cut it out entirely. Instead of using two pieces of bread to make a sandwich, I would use one piece and make a fold-over sandwich. I kind of thought I was feeling vaguely better, so I cut out bread entirely. Then when I did that, I thought I was feeling even better, so after another week or two, I stopped eating pasta. I had been eating a whole. whole lot of bread and pasta to start with, so when I cut those two things out, that was about 90% of the gluten in my diet. By that point, my baseline level of symptoms was low enough that I could tell when other things aggravated my symptoms. I became aware that cheese and yogurt, which I was also eating a lot of, caused problems for me, so I cut out those. At that point, I felt so much better that I didn't even want to eat a little bit of the things that make me feel bad, so I started reading ingredient lists very closely for hidden gluten and casein. And that's where I am now.
If you want to find out more about nonceliac gluten intolerance, PM me for some links or just google it. There is an excellent chance that you will be helped. Good luck.
Since you've already been tested for celiac disease and wheat allergy, and have been found negative for both, the best test for you to rule out nonceliac gluten intolerance would be to simply go on a gluten-free diet for at least a month (six months would be better) and see if your symptoms improve. There is a lot of cross-reactivity between gluten and casein, which is milk protein, so you are more likely to see a quicker difference if you also eliminate all dairy products. If you can't eliminate all gluten and all dairy at the same time, it is fine to just start gradually peeling away problem foods one at a time.
In my case, I first started eating less bread, but I didn't cut it out entirely. Instead of using two pieces of bread to make a sandwich, I would use one piece and make a fold-over sandwich. I kind of thought I was feeling vaguely better, so I cut out bread entirely. Then when I did that, I thought I was feeling even better, so after another week or two, I stopped eating pasta. I had been eating a whole. whole lot of bread and pasta to start with, so when I cut those two things out, that was about 90% of the gluten in my diet. By that point, my baseline level of symptoms was low enough that I could tell when other things aggravated my symptoms. I became aware that cheese and yogurt, which I was also eating a lot of, caused problems for me, so I cut out those. At that point, I felt so much better that I didn't even want to eat a little bit of the things that make me feel bad, so I started reading ingredient lists very closely for hidden gluten and casein. And that's where I am now.
If you want to find out more about nonceliac gluten intolerance, PM me for some links or just google it. There is an excellent chance that you will be helped. Good luck.
Hello everyone. The doctor told me, though he is not fully convinced this is it, he thinks I may have asthma. I started on daily and rescue inhalers. Though I needed the rescue inhaler twice yesterday and took the daily as directed, I feel no improvement. I understand it takes time to work. However, this morning, I feel I am getting worse, as activity that did normally not get me winded, did this morning (drawing).
More than anything else, I wanted to update you all. I will probably post on the asthma board.
Regarding gluten intolerance, do you mean celiac? I was tested for that after I got out of the hospital and it came up negative. I also had an extensive adult allergy panel last year (including celiac), in addition to IgE, and the other two Ig acronyms I don't recall.
Ashwin, I don't have an answer for you, however I wanted to wish you luck finding an answer. There are very knowledgeable people on this forum who know way more than I do!
K
More than anything else, I wanted to update you all. I will probably post on the asthma board.
Regarding gluten intolerance, do you mean celiac? I was tested for that after I got out of the hospital and it came up negative. I also had an extensive adult allergy panel last year (including celiac), in addition to IgE, and the other two Ig acronyms I don't recall.
Ashwin, I don't have an answer for you, however I wanted to wish you luck finding an answer. There are very knowledgeable people on this forum who know way more than I do!
K
I agree with skyd, a 'trace' diagnosis is basically giving you a completely healthy diagnosis. Usually tests explain results as trace, mild, moderate and severe when describing valve leakage. Almost no one has perfect valves, so trace is basically the diagnosis for 'completely normal'. I'd cross off heart valve problems as a source of concern.
Chewing gum creates gas, gas can cause your symptoms. Just a thought.
Chewing gum creates gas, gas can cause your symptoms. Just a thought.
Okay, this will be out of left field, but I recently found out that I am gluten-intolerant, and I'm aware that several of the disorders on your list -- specifically, GERD, mood disorders, fibromyalgia, and migraines -- can be related to underlying food intolerances. Maybe some of the other things you are dealing with, too, could be related, but I listed the ones that I definitely know about. To my knowledge, gluten intolerance is probably the most common type of food intolerance. This is just something for you to consider. I know that this is the heart forum, so I don't want to get too far afield, but in a way, it would actually make things easier for you, if there was one underlying commonality that tied everything together. If you want to explore it, you can simply stop eating gluten, and see what happens. That doesn't cost anything, and you don't need a doctor's order. I'm being very brief, here. There's a lot more detail to know, if you want to try this. Only you can decide if you're interested. But if you were my loved one, I would probably lock you in the basement for about three months and feed you nothing but low-reactive foods. Just kidding, hah-hah. Kind of.
Hi. I will try to keep this brief.
PCOS (polycystic ovary syndrome)
Psoriasis
Biliary dyskinesia (had gallbladder out in April, yet this is still on my chart)
GERD - controlled with meds
Bipolar depression - controlled with meds
Fibromyalgia
Migraines - currently under control with maintenance meds only
Pelvic floor dysfunction - currently in remission
I called the pulmonologist office due to my symptoms getting out of control and my having to go home from work three days in a row. It turns out the doctor is out all week doing hospital rounds and they got me in to see another doctor after I called a bunch of times asking about the tests. My appt is early tomorrow morning.
Thank you,
K
PCOS (polycystic ovary syndrome)
Psoriasis
Biliary dyskinesia (had gallbladder out in April, yet this is still on my chart)
GERD - controlled with meds
Bipolar depression - controlled with meds
Fibromyalgia
Migraines - currently under control with maintenance meds only
Pelvic floor dysfunction - currently in remission
I called the pulmonologist office due to my symptoms getting out of control and my having to go home from work three days in a row. It turns out the doctor is out all week doing hospital rounds and they got me in to see another doctor after I called a bunch of times asking about the tests. My appt is early tomorrow morning.
Thank you,
K
You mentioned initially that you see your doctor a lot. Do you mind saying what diagnoses you actually have, that you are being treated for?
Hi. Tomorrow I will call during my lunch for the results. I don't like to bug, however my symptoms have been getting worse. I find that it is not the food, but the activity of eating that brings it on. Chewing gum, which isn't actually eating, will bring on my symptoms. Any slight activity will, really. I have had enough. Eating a small meal brought out the worst this afternoon and I had to take an hour nap to sleep off the symptoms. Sigh...
Trace regurgitation of a heart valve will rarely, if ever, cause symptoms. Trace regurge is something that a lot of people have and never know it. Have you been following Pomask's thread? Because his symptoms are kind of similar to yours, and he's had a hard time getting a diagnosis also.
Today, I had a terrible exacerbation of my symptoms. :( I called the doctor's office and requested results. The echo showed a "trace" of regurgitation, though it will be up to the doctor to determine if it is considered significant or not. He is only in half a day today and may not read it until next week. The full VQ report is not out yet.
Now, I am home on the couch because my shortness of breath got to be too much, along with the chest pains and fatigue. :(
Now, I am home on the couch because my shortness of breath got to be too much, along with the chest pains and fatigue. :(
Thank you. My VQ scan returned a "low probability" (of a Pulmonary Embolism.) Since my test results did not require an immediate hospital stay, my doctor said I could go home. I suspect he will review the results of both tests next week and proceed from there.
K
K
The Echo will determine many details about your heart function, such as valve function and heart size, and the VQ will show lung function. An Angiogram is the gold standard to determine if you have a heart arterial blockage, but it is usual for a stress test to precede an Angiogram. Keep us informed.
Yes, I am glad it is not sleep apnea. That is good to know, especially since it runs in the family.
By the way, I forgot to mention that I found out my EKG done in the hospital showed non-specific changes. The doctor told me that yesterday. I am glad they are running the echo tomorrow; I am curious what it will show, not show or lead to next. Same with the VQ scan.
K
By the way, I forgot to mention that I found out my EKG done in the hospital showed non-specific changes. The doctor told me that yesterday. I am glad they are running the echo tomorrow; I am curious what it will show, not show or lead to next. Same with the VQ scan.
K
Negative results do give you information about what the problem is not, so that's good, as far as it goes. Looks like you're working through the possibilities.
Yesterday, I saw the pulmonologist for a follow up. My sleep study was normal. Since I am having breathing issues still, he ordered a VQ scan and an echocardiogram to check my heart and lungs. The echo is tomorrow and I am awaiting a call from the hospital for the VQ scan.
My breathing issues happen in the day, too. Sometimes, they are brought on by eating and I get lightheaded, too. I can lo longer do the things I used to, like carry a few bags of groceries up a flight of stairs without great difficulty. I can actually do less than I could when I was 100 lbs heavier! Yuck!
K
My breathing issues happen in the day, too. Sometimes, they are brought on by eating and I get lightheaded, too. I can lo longer do the things I used to, like carry a few bags of groceries up a flight of stairs without great difficulty. I can actually do less than I could when I was 100 lbs heavier! Yuck!
K
Thank you. They said I would get a summary results letter in two weeks, though the doctor's office could call me before then to order more testing. Hmmm.
K
K
Doctor thinks it is sleep apnea, I go for a study tonight!
I will keep you posted.
K
I will keep you posted.
K
Good. Let us know what you find out, if you don't mind. Hope it's something that can be easily treated.
Thank you for the suggestions. My doctor booked me an appt a week from today with a pulmonary specialist at the sleep clinic.
K
K
My situation is CHF and my lungs can fill with water, but whatever can cause you to stop breathing or getting too little oxygen to wake you up is terrifying. KodeMaster, I believe skydnsr is giving you excellent advice, see a sleep medicine specialist.
That said, I'd strongly suggest you raise the head of your bed at least 5 - 7 inches. You can do that fairly easily by cutting two sections of a 4 x 4 post and four sections of a 2 x 4. Combine under each leg of the bed a 4 x 4 and two, 2 X 4's. I saw extenders available recently at Bed, Bath and
Beyond, so they are available commercially as well. You simply can't succeed using pillows, even wedged ones, but the inclined bed might work. This works for me. I'm taking excellent drugs to help control my problem, but raising the head of the bed is universally effective with CHF, GERD and sleep apnea patients.
That said, I'd strongly suggest you raise the head of your bed at least 5 - 7 inches. You can do that fairly easily by cutting two sections of a 4 x 4 post and four sections of a 2 x 4. Combine under each leg of the bed a 4 x 4 and two, 2 X 4's. I saw extenders available recently at Bed, Bath and
Beyond, so they are available commercially as well. You simply can't succeed using pillows, even wedged ones, but the inclined bed might work. This works for me. I'm taking excellent drugs to help control my problem, but raising the head of the bed is universally effective with CHF, GERD and sleep apnea patients.
Flycaster will probably tell you the same thing when he checks back in, but waking up with a dry mouth and unable to breath until you change position sounds like some kind of sleep apnea. Whatever this sleep issue is, it needs to get diagnosed and remedied. I agree with Flycaster that you need to see the doctor. Your PCP can decide, based on your medical details, if you need to see a cardiologist or a sleep medicine specialist first. Based on the additional information that you provided in your last post, the problem could be in either area.
I agree that the elevated lover count doesn't necessarily sound like a bad thing, however. Maybe you don't want to mess with that.
I agree that the elevated lover count doesn't necessarily sound like a bad thing, however. Maybe you don't want to mess with that.
LOL - the typo daemon got me again. I suppose it could have been worse. ;-)
This morning, I only got two hours of sleep and when I tried to lie back down. I fell asleep a few times, only to wake back up after a minute and yes, it did sort of feel like my lungs were filling up. I don't recall how I felt when I woke up not able to breathe, except that I was in a huge panic with my mouth wide open, unable to breathe through my nose, as if my body was trying to breathe through it and couldn't. My mouth was dryer than cardboard.
In both cases (when I wake up in a panic after an hour or two of sleep -- PND? and the instances like the one described above -- orthnopnea?), my throat gets very dry, like I am having an allergy attack or cold, only to go away after drinking fluids and catching my breath.
I find I have to "toss and turn" a lot, and that I can only sleep on my side. I prop my head up on two pillows and perhaps that is not enough. I tend to sleep better on the couch anyways, with at least two pillows.
Thanks again,
K
This morning, I only got two hours of sleep and when I tried to lie back down. I fell asleep a few times, only to wake back up after a minute and yes, it did sort of feel like my lungs were filling up. I don't recall how I felt when I woke up not able to breathe, except that I was in a huge panic with my mouth wide open, unable to breathe through my nose, as if my body was trying to breathe through it and couldn't. My mouth was dryer than cardboard.
In both cases (when I wake up in a panic after an hour or two of sleep -- PND? and the instances like the one described above -- orthnopnea?), my throat gets very dry, like I am having an allergy attack or cold, only to go away after drinking fluids and catching my breath.
I find I have to "toss and turn" a lot, and that I can only sleep on my side. I prop my head up on two pillows and perhaps that is not enough. I tend to sleep better on the couch anyways, with at least two pillows.
Thanks again,
K
Lover checks sounds like more fun :).
Do you feel like your lungs are filling with water? I don't know about gastric bypass surgery but I'm betting it challenges the kidneys like heart issue do, and know about waking up in a panic when I can't breathe. I'd not worry about bothering the doctor, your symptoms certainly need medical evaluation, in my opinion. I hope you investigate this condition and keep us informed.
Do you feel like your lungs are filling with water? I don't know about gastric bypass surgery but I'm betting it challenges the kidneys like heart issue do, and know about waking up in a panic when I can't breathe. I'd not worry about bothering the doctor, your symptoms certainly need medical evaluation, in my opinion. I hope you investigate this condition and keep us informed.
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