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Agreeky

Weird Breathing Symptom

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Hey everybody. I got so many responses on my eye problems I thought I would throw this out there too. Since last summer I have had a hard time breathing on and off. Some days it feels like my body is not breathing on its own. Other times I literally feel suffocated. This is unrelated to bp or heart rate. The weirdest part is this sensation I get on the left side when I breathe. It is almost like a paper bag is in my body and I can feel it inflating and deflating... Or like my lung has cob webs and I am breathing through it. So hard to explain. Lung doc stumped. I am thinking it is s connective tissue thing. I also get a sharp pain in upper left to middle rib when I breathe think it is diaphragm... Would love any input

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Sometimes when blood flow is limited to the abdominal area, this can occur. Going in to a recliner helps. Also a wedge pillow can help if this happening in bed.

Also, wearing abdominal compression (like a girdle, binder, or a vest) makes it better.

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In the very beginning my son has some breathing problems. When he was in the hospital, they did that one test ( to blow into the tube). He failed it, but they said it was lack of effort. My husband and I know different . What helped my son the most was being in a recliner. When he gets sick a humidifier helps and so does raising the head of his bed a few inches. However, there are some nights that he sleeps in the recliner, because it seems to help the most. You do what you have to in order to make your loved one more comfortable.

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Yes. I feel like an elephant is sitting on my chest and I have to lift the elephant and my lungs to get air (but I am not asthmatic .) I also feel like no matter how much air I'm taking in, I'm not getting enough oxygen. We have talked about this quite a bit on this forum and there is conjecture that it may be thoracic hypoperfusion which my POTS neuro says is a possibility but that no one (from a research perspective) has been able to solidly find a cause although it is a common complaint amongst POTSies.

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RichGotPOTS did a good breakdown of these breathing issues. One seems to be caused by a nerve dysfunction and the other perhaps by an actual lack of perfusion in the chest area. The "forgetting to breathe" feeling is the nerve dysfunction one but the second one you describe (smothering sensation) could be either the nerve dysfunction or an actual, although transient, problem with lung capacity and blood flow. Anyway just to let you know you're not alone. RichGotPOTS has had it for around 18 months on and off and I've had it for 6 months now fairly constantly. It's very distressing so I completely understand what you're going through, as would the many others I've spoken to that have it regularly or have had it once.

Hang in there. Research is continually showing connection between POTS and Small Fibre Neuropathies and immune dysfunction. While it's hard enough to get Small Fibre Neuropathy skin biopsy testing (I couldn't get it) let alone immune treatment (like IVIG, Rich couldn't get it), there is hope that research is slowly but surely getting the immune connection fleshed out and doctors will someday find it plausible and will treat POTS properly.

There are other potential immune treatments other than IVIG. If anyone wants to discuss these you can PM me.

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Thanks for the intro Foggy :)

i have a pretty big poll on here for breathing problems, what helps and what makes it worse. You're not alone. It's my worst symptom. I'm on disability because of it. So far I learned I have Sjogren's syndrome which destroys my small fiber autonomic nerves and causes pots. So it stands to reason that those autonomic nerves are also destroyed in the lungs and are impairing breathing. Usually neurologist are focused on neuromuscular diaphragm large fiber nerves. There may also be some involvement with large fiber diaphragm nerves too but I thimk it's mainly the autonomic ones giving us the most grief.

I still have to get an EMG, but most pots ppl I know test normal On their EMG. The other test I want is called a Sniff test and it supposed to test for Motor focal neuropathy in the lungs. i know someone who got IVIG after an abnormal sniff test.

Private message me if you have other questions about breathing issues.

Rich

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I have breathing problems too, and weird sensations/pain on the left side in particular. My chest is very tender to touch, and lying down can be very difficult due to the heavy feeling and spasms that go through to my back. Chest ct normal; waiting on lung function. About a year ago, before my other symptoms began, I started getting that forgetting to breathe thing. Now my main problem is the sudden or persistent feeling that it's hard to breathe or I'm not getting enough air.

However, and I can only speak for myself here, but I've noticed that my oxygen levels on monitors have mostly been fine when I have this feeling. There are reasons dysautonomia could cause breathing problems, but breathing is also a ***** whenever you're anxious or as soon as you're conscious of it. For example, many of my perfectly healthy friends and family now have this problem simply from seeing me have it, which is hilarious. It could be that our general weakness and nervous system problems are causing us to hyperventilate almost constantly, which makes many dysautonomia symptoms worse, and hyperventilation makes you feel air-starved.Due to nervous system involvment, dysautonomia does share many symps with anxiety problems.

And now, after thinking about my breathing for this whole post, I think I may need to go pass out :P

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I had both symptoms that you describe feeling as if my body was no longer breathing on it's own and needing to mechanically breathe. During this time my diaphragm did feel very weak almost paralyzed along with the other chest muscles that help us breathe so it was laborious and painful when this happened. The other was feeling as if I was not getting oxygen and suffocating. Each session of these would last maybe an hour. The other for me was feeling as if everything was tightening up and it would start down low in the base of the lungs and move higher until it felt like I only had maybe the top 1/4 of my lungs able to work and exchange air.

All of these situations were very anxiety producing,

I was not able to climb stairs, read a book, laugh, get animated with voice or have very long phone conversations. I would feel as if The wind was knocked out of me and I was starving for oxygen.

There are times now while active I have to pace my breath because it seems my body can't handle several activities at once like walking and breathing. Or it's like my bodies screaming more oxygen more oxygen and so I start to hyperventilate if I don't take steps to counteract that.

The situations I described first got much better for me so I hope that can happen for some of you too because the symptoms really are awful to go thhrough, I still have difficulty with climbing stairs and It has not been that long ago that these things happened for me so I am still cautious of what I do that requires air volume. I can't remember the other term right now sorry POTS brain.

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I have times where it feels like my body has forgotten how to breath. I had an awful spell Monday. I have some 02 to help me. Even taking a shower can be over powering, hard to breath. Have to turn down the temp. of the water and keep the curtain half opened so I can breath. The steam and heat make me feel suffocated. I always start off having to take deep breaths , some coughing...then the breathing gets very difficult. Horrible feeling. Scary too. A few times when I was so sick from dys. and gastroparesis...I was afraid I would stop breathing all together when I went to bed.

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It's interesting so much of us have this. When I first joined this board and just had the usual POTS symptoms no one seemed to be talking about it. Now suddenly when I have it I notice everyone is talking about it (or a lot of people rather). Strange this all seemed to come out of the woodwork now.

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Me too. I hate this particular symptom the most. I do have asthma as well, but there are many times when I think I am having an asthma attack and my oxygen levels are nearly 100 percent and my peak flow is normal. It is maddening to say the least. I have noticed that personally I have the breathing symptoms a lot more when I am having trouble controlling my temperature and am suffering from feeling like I am freezing or burning up!

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Thanks everybody for your responses. For me it is my most bothersome symptom. It scares me. Also, I do not get what triggers it because it comes and goes. Weird part though is my oxygen levels are excellent during day. They drop during the night though. They said I have hypopneas. I did a study with a cpap but my body had a hard time with it. Waiting to see what my diaphragm function tests say... Rich I will private message you for some more info. Have you guys had abnormal pft tests?

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The advanced testing sound crucial for many to make progress.

I wonder if others might benefit from an oxygen concentrator (can buy on craigs list) or a CPAP breathing machine.

There is a machine called an S9 by RESMED that literally helps you breathe in and out. It anticipates

when you begin to inhale and gives you a boost. I think it could help many here.

You can add 02 to it if needed.

Its also important to breathe COLD air, without too much humidification. Not dry, but water soaked air

is hard to breathe. Think of a sauna. Even a fan will help many.

They also have mini ventilators or VPAP type machines.

I think other causes can be food allergies related to nervous system breakdown. Anything with MSG is really bad,

as well as histamine. Most of our food is saturated with MSG. Or others drink aspartame sweetener. THey BOTH

interfere with breathing giving anaphylaxis type symptoms.

Its in everything. Spaghetti sauce, KFC chicken, soup, salad dressings, sausage, ravioli, and hundreds of others.

You HAVE to learn to read labels. Avoid any processed foods.

Others are allergic to milk, eggs, etc without knowing it. Theyre actually suffering respiratory allergic reactions

as much as DA issues i think.

Finally, SWIMMING is a huge help to me personally, Its antigravity aerobics and it regulates my breathing and lowers my

internal body temp. Id swim twice a day if i could.

You cant believe it until you've tried it. I swim an hour a day many days.

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I have a friend who also has this really awful breathing problem and they started taking IVIG and it got much better. Thats why I'm sure is nerve/neurologically related. Actually in order to get the IVIG her pulmonologist did a diaphragm fluoroscopy test called a Sniff test. Ask your doctors for it. It's non invasive, not even contrast. You just breath while laying then standing, which sound perfect for us. Her doc diagnosed Motor Focal Neuropathy because of it, which is a stretch but its a cover reason to get IVIG.

I also have a theory breathing machines like BiPaP and CPAP would benefit us because our autonomic system regulates sleep and it's like those machines would be training our autonomic system while we sleep. So it's like subconscious training.

I think the part where our system forgets to breath for us is like an awake apnea. I don't think we could call it anxiety, but it's like the nerves aren't sending signals to our brain to breath because another signal is blocking it. Sure anxiety is one type of signal, but I think any overriding over sensory signal will do the same thing.

I also noticed my GF getting a weird breathing issue as me. Possibly our rhythms clocks are getting shared. Why can't I get the good one she had though :/

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If the symptoms are distressing considering sampling klonapin. Many are afraid of this drug but ive been on it

2.5 years as needed.

Something about binding itself to nerve endings.

It DEFINITELY helps me breathe better anyway. I use it as needed.

The swimming is something EVERYONE should try. I personally believe it helps regulate the autonomic or sympathetic nervous

systems.

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Spinner I appreciate all the advise. I often have thought if I have a dairy allergy... I did regular allergy testing but do not think this was included. I actually got approved for a cpap due to apnea. The doctor is not sure how well I will handle it though. When I did the study on it my body kept jerking not sure why?? I wonder if my muscles were not strong enough to push air back out. Rich, I have read about that test. Think it would be a really good test for me. I wonder if a neuro can order it? I am going to one that specializes in dysautonomia tmrow at Boston Medical center. I will update again. Thanks guys!

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On 5 June 2013 at 12:45 PM, lieze said:

I had both symptoms that you describe feeling as if my body was no longer breathing on it's own and needing to mechanically breathe. During this time my diaphragm did feel very weak almost paralyzed along with the other chest muscles that help us breathe so it was laborious and painful when this happened. The other was feeling as if I was not getting oxygen and suffocating. Each session of these would last maybe an hour. The other for me was feeling as if everything was tightening up and it would start down low in the base of the lungs and move higher until it felt like I only had maybe the top 1/4 of my lungs able to work and exchange air.

All of these situations were very anxiety producing,

I was not able to climb stairs, read a book, laugh, get animated with voice or have very long phone conversations. I would feel as if The wind was knocked out of me and I was starving for oxygen.

There are times now while active I have to pace my breath because it seems my body can't handle several activities at once like walking and breathing. Or it's like my bodies screaming more oxygen more oxygen and so I start to hyperventilate if I don't take steps to counteract that.

The situations I described first got much better for me so I hope that can happen for some of you too because the symptoms really are awful to go thhrough, I still have difficulty with climbing stairs and It has not been that long ago that these things happened for me so I am still cautious of what I do that requires air volume. I can't remember the other term right now sorry POTS brain.

Lieze,

Do you, pr anyone out there, wake during the night fee.ing as if you can not breathe and with a very flat dry sensation that makes you feel like you are in a desert unable to breathe? Sorry if sounds crazy!

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As soon as they put me on beta blockers for Ventricular Tachycardia I complained that I could no longer feel my lungs work, that I had to make myself breathe. I haven't been on beta blockers for eight months, but the symptoms all remain, including this breathing issue, quite frightening to forget to breath whilst you are asleep so you dream you are suffocating and that the ambulance wont possibly get here before I suffocate.

My cardiologist did organise lung function tests that came back as good, so nothing mechanically wrong with my lungs, I can get my blood oxygen level as high as 98%

So I bought my own blood oxygen monitor and find that half the night, I have a dangerously low blood oxygen level of 85% and wonder if this is why I now feel drunk all the time?

My theory is that beta blockers, which disrupt the Autonomic Nervous System, have disrupted my Autonomic Nervous System, permanently, and so my ANS isn't detecting the low blood oxygen levels and so is not getting my lungs to automatically compensate.

 

Just sleeping Printing SpO2 Report.jpg

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My breathing issue started over 2 years ago and was the start of my POTS journey. It feels like having a corset on and it is too tight. I feel like i have to take a deep breath every 2 or 3 minutes. Half the time i can't get my lungs to fully expand. Sometimes it feels like something is on my chest. Sometimes it feels like i am really pregnant and the baby is pushing on my lungs. And it varies in intensity everyday. Heart rate does not effect it but position can help get my satisfying breath easier. In the beginning i would fight it and end up in the ER from hyperventilating. Pulmonologist ruled out everything. Then i stumbled across POTS. I was diagnosed last January. I started seeing a POTS specialist in September. He believes it is because of my POTS not sending the signals right. We are investigating underlying causes now. Sometimes it can be frustrating not having the answer. But having doctors that believe me and slowly working toward an answer helps.

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I had the excessive yawning and feeling like I couldn't catch my breath or take in a full breath 5 years before my NCS symptoms started. Went thru all the pulmonary function tests, even CT to rule out PE-all were normal. Recently I was tested positive for sleep apnea and wear a CPAP (if you have low O2 sats at night please get tested-sleap apnea can kill) and it has helped my "wakefullness " during the day but I still have the symptoms of trying to take a deep breath but it "catches" before a full breath and the need to yawn alot....Just part of the syndrome

 

 

 

 

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On 6/3/2013 at 10:30 PM, Agreeky said:

Hey everybody. I got so many responses on my eye problems I thought I would throw this out there too. Since last summer I have had a hard time breathing on and off. Some days it feels like my body is not breathing on its own. Other times I literally feel suffocated. This is unrelated to bp or heart rate. The weirdest part is this sensation I get on the left side when I breathe. It is almost like a paper bag is in my body and I can feel it inflating and deflating... Or like my lung has cob webs and I am breathing through it. So hard to explain. Lung doc stumped. I am thinking it is s connective tissue thing. I also get a sharp pain in upper left to middle rib when I breathe think it is diaphragm... Would love any input

Did you ever get any answers? This is my biggest issue right now.

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This is by far my worst symptom, too. I have it all day every day now, with varying intensity. I would do anything for some relief.

I'm trialing some antihistamines at the moment, but I would appreciate any advice 

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