Unexplained breathing problem about to drive my husband crazy, many tests ran, no sign of any problems; help?

[purplegarden33]

Hi,

I've read a few different scenarios where a person feels like they can never get a deep breath, that they feel like they're suffocating all of the time, and no matter what test that are done on them, it always shows no problems. Then eventually, people look at you like you're crazy. They say that you have anxiety and that's what's causing it. Well yeah duh you have anxiety, but it's the breathing problem that's causing the anxiety. It would drive anyone crazy, and unless you experience it, you have no idea how miserable it can be. There are so few people that have this problem, that it's looked over. Unless it's a problem that happens a lot, and isn't something rare, the medical field will help you. If it's something rare, you are going to have a hard time, and the medical field is going to depress you even more. Not trying to down the medical staff; I know there are some good ones out there, and I respect you very much.

My husband is 33 years old, and for the past 10 years, he hasn't been able to breath. When I say "not being able to breath," I mean can't get a satisfying breath. He feels like he's suffocating all of the time. Every now and then, he can get a satisfying breath. He says he can get a satisfying breath about 8% of the time, sometimes not even that. He maybe has 5 good days out of the year. Here's something crazy: About 6 years ago I wanted so much to feel what he was feeling just so I would know what it was like, and somehow, my wish came true. It lasted for one day. I couldn't get a good breath to save my life. It makes you focus so much on it, that you can't help it. Then all of a sudden, you can get a breath, then it goes away again. And I'm like "what in the world is this?" But the next day, I was fine, and it hasn't happened ever since. I've never had anything happen so explainable. I was able to see what he felt for an entire day. But enough about me.

My husband's had many tests run, and they all come back fine. CT scans, MRI's, Asthma tests, pulmonary tests, gastro tests. He sees a neurologist, he does't have MS. Blood work is fine. He doesn't have COPD or anything like that. ( I was so certain at one point that it was GERD (stomach problem) but it's not. I've only been able to find one link to his unexplainable breathing situation or "dyspnea" Snuff. You always hear about smoking causing breathing problems, but never snuff or chewing tobacco. Snuff has a lot more nicotine than a pack of cigarettes. He quit dipping for a year one time and in a matter of 9 months, he could breath again. He got so excited that he just started dipping again. (Smart right?) That goes to show you just how smart us humans can be sometimes huh?

It wasn't 6 months down the road, and his breathing shut off again. I kept trying to tell him to stop, but he wouldn't listen, then things went south, and we parted ways, but we found our way back to one another again. He struggled for years trying to quit; he was so heavily addicted. His breathing never went back to good again. He quit 7 months ago, and his breathing hasn't gotten any better. We've had heart scans done, he even had a heart cath at one point, and it's all clear. The heart can really mess with your breathing. I figured the nicotine was raising his heart rate which was causing the suffocating breathing. And the stress of quitting something so heart stressing as nicotine, really made his heart do some crazy stuff. Also he has stomach issues, so if he has GERD on top of that, then that could be a good concoction for not being able to take a satifying breath. He's also caught colds and stuff from our kids which has slowed his recovery rate down. I try to factor all of these things in for him, but he just won't believe me any more. I told him that it took longer than 7 months years ago when he quit to get better, and it's like, he won't believe it? He won't take any kind of nerve medication either. He never has took any and he never will. I told him it would at least help him deal with the stress up until the point that we need him to reach to see if it will get better again, but he won't do it. He just says I'm trying to drug him so I won't have to deal with him. I know it isn't really him saying it, it's his condition that he has no control over. Feeling suffocated and not being able to do anything for years isn't comprehend-able unless you have it. I understand that.

In this time that we're waiting to see if quitting snuff will do the trick, he can't stay calm. It's such a chaotic home again. Me teaching school doesn't help, because I bring home little sicknesses all of the time. And the stress of school and not being able to help my husband, really doesn't help. He stays in a constant miserable state and always talks about dreadful things and suicide. When I'm not feeling well some days, I get so tired of hearing the dreadfulness and I get a little short with him, and then a war starts. It's so easy to tip the scale. He's agreed to stay quit for an entire year to see if it works. Because of COVID-19, I'm no longer around anyone, therefore, I won't be bringing home any other sicknesses, so hopefully once all sicknesses is out of the air at our home, it will allow him to repair and we can see if this very off the wall cause (snuff) does the trick again. I just hope he can keep it together for another 5 months. Does anyone else out there have any other solutions that aren't the typical ones? Because the typical ones have all been tested.

Here's what I've found on my journey to finding a solution to unexplained dyspnea:

It could be GERD

It could be heart

It could be asthma

Allergy to nicotine (After quitting, takes months and months for results)

It could be a mix

But it could also be something up with your lungs that the CT scan isn't detecting. I looked on the MYO Clinic website and there are so many tests that they can run on you for breathing problems. The doctor or Respiratory specialist won't even mention them. They'll run the basic stuff on you, and that's it, and send you on your way, while they go home and feel great. So do your research on all of the tests that they can do. If one respiratory specialist isn't doing much, switch. It's all in how willing you are to find a solution. Don't give up guys, and I won't either. Anything I find, I will post.

To all of you that can't find a solution and have to live everyday in suffocating misery, I'm truly sorry.

[Sparkywoo]

I feel for your husband and you are so right. Not being able to get a good breath makes you anxious which makes it worse and round and round it goes. First things first, quit the nicotine for good. It may make things worse short term as your body tries a thing to get you to have your nicotine fix. Until he does that you really can’t be sure if that’s the problem and as all other tests have been clear sounds like it could be.

[purplegarden33 in reply to Sparkywoo]

Thanks so much for your reply! Yes if I can just keep him off of it.

[knitter]

Anxiety/ breathlessness .......it can get into a vicious circle and hard to break.

You say he does not want to take mood altering medication , but has your husband been offered counselling or Cognitive Behaviour Therapy....talking to a professional may help.

There are social therapy groups available in some places too.

Has he been offered meditation or mindfulness classes?

Has his breathing pattern, number of breaths per minute, been monitored to see if he is suffering from dysfunctional breathing which may lead to hyperventilation ? Does his breathing pattern change under stress?

Does he breathe through his mouth , rather than his nose to warm and filter the air ? Gentle, gentle nose breaths .....low and slow, can help.

I am sorry you both are suffering , I hope you find a remedy soon.

[purplegarden33 in reply to knitter]

Thanks for your reply! His breathing doesn't get worse when he gets stressed. I ruled out hyperventilation due to the fact that he doesn't breath fast or over breath. I mentioned it to him before, but he said there is no way that's what it is. But it wouldn't hurt to look into again. He breaths through his nose. He has a meditation app on his phone called "Calm" that he uses sometimes. Mindfulness classes is something I will mention to him. Maybe he'll go for it.

Thanks again!

[Jaybird19 in reply to purplegarden33]

I do have damaged lungs and cannot breathe properly but i know that i can get so much worse if i get anxious. I can wake uo and really have to calm down not

knowing what has caused it, so i understand you r husband. A nxiety can make an

underlying problem so much worse.

Sorry i cannot help you more than just saying that. It is very difficult for you .

[purplegarden33 in reply to Jaybird19]

Thanks for your response and I'm sorry you have to live with this problem. I hope you have plenty of support at home. It would be so hard dealing with it alone.

[MarilynSakkis in reply to purplegarden33]

Please look at U- tube yoga for asthma, copd, and anxiety. Lots of good pranayama techniques that help.

I am a yoga teacher and yesterday I did around 3 hrs of yoga throughout the day.

2 days ago I started having shortness of breath which rarely happens even though I have bronchiatitis. I also have lots of stress with family but really work on staying present...reading....Bible....lots of prayers....I also take a natural stress relief called Serenegen(Amazon)...

Last night I puffed my inhaler...helped me sleep and had a great day cleaning.

Presently my lungs are tired and will end the night with restorative yoga poses.

[Caspiana]

Hello purplegarden33 , 😄👋

Welcome and I'm sorry to hear about your rather arduous journey at the moment. One thing to ponder which may or may not help, nicotine, smoked or otherwise can cause a narrowing of the blood vessels. Over a long period this leads a stiffening of said vessels and instead of elasticity, the vessels become hardened. This of course restricts vital oxygen flow causing shortness of breath and high blood pressure. If that isn't bad enough, a higher risk of strokes as well. Smoking, or chewing tobacco along with bad breath, can also result in oral cancer. My grandad had that from smoking cigars and pipe tobacco.

How much do the doctors know about his habit and how long he's been on it? Is he very open when he talks with them? I am you know this and I am very sure he knows this but my guess is if he does not quit, things could potentially be very, very much worse.

I was also wondering if he does much physical exercise? Perhaps ask for his doctor's advice about exercise. For us with lung issues, the tendency is not to move because it makes us breathless and breathlessness is the enemy. The truth is supervised, approved by our doctors , exercise will help us breathe better because it improves circulation and helps our bodies to make better use of our oxygen. It also prevents excess weight, gives us more muscle tone. Excess weight leads to more shortness of breath. It really is a vicious circle no exercise= more weight= more shortness of breath. I think knitter is right in saying he may benefit from counseling.❤️

Now to you. How are you coping yourself? What are you doing for you? It seems as though you are pulling the bulk of the load, working, running things at home and trying to keep him from sinking. From experience I will tell you this. You must care for yourself before anything. It's like in an aeroplane, when the oxygen mask falls, you must put the mask on yourself before you put it on those who depend on you. Easier said than done. I know. 😒

I think I may have gone off on a bit of a tangent, so I'm sorry as much of what I have said may not even apply to your situation. But I hope it helps a little.

Take care of yourself.

Best wishes,

Cas xx 🦋🌿🌼🥀

[Corin1950 in reply to Caspiana]

That’s a wonderful response Cas full day f useful advice and particularly about looking after yourself while you are carrying the weight.

X

[Caspiana in reply to Corin1950]

I think most of us know what this is like Corin. For some reason (especially us women) we think it's our responsibility to take on the toughest situations and yet somehow emerged unscathed. Which is unfortunately, is almost never the case. 😬 xx 🙋💓

[purplegarden33 in reply to Caspiana]

Thanks for such a great response! He is very specific with his doctor. He talks so much, that the doctor almost has to tell him to be quiet (which doesn't help his situation where the doctor thinks it's anxiety.) We have switched a couple of times. He's going to switch to a new respiratory specialist soon. We feel that some doctors overlook him a little too where he's so young. Some doctors will tend to do that I've noticed. He's always been really slim. He's gained a little weight, but not enough to make him look any larger than what he is. He needed to gain a little weight. I can see where you're coming from with the vessels being hardened. It very well could be the problem. He did actually used to smoke, but it was when he was young, like in high school. The problem came along when he was around 24. He doesn't do a lot of exercising. He gets so short of breath that he can't. He says he's about to pass out. I feel like he could try and push himself a little further, but if I mention it, he gets upset. He is still having nicotine withdrawals, so I tread lightly. He says I don't understand what his body is feeling. I tell him that I know, but I try really hard to. I keep a very open mind, but he doesn't. I also have a lot more drive than him. I always have. He also has a lot of support from his Dad. His Dad knows a lot of people in the town that we live, and so my husband can get in to see some doctors earlier than some. My husband has really got it made, but if you don't feel good ever, it doesn't matter what you have, you'll give it all up just so you can feel okay. My husband is spoiled, but he's not at all materialistic. He just wants to feel better. I feel he's sinking more and more, he doesn't get out of bed now until 4 in the evening. He doesn't work. I tell him that the day is when you feel better. If you sleep the day away and just stay up in the evening and night, your're up in the times that people's body's feel the worst. But then he gets upset and says that I'm trying to say that him getting up at a different time will solve the problem, and that's not what I mean at all, and he knows that. I have to be strong for him. It's tough, but I'm used to it. I set aside a little time in the day to be by myself. I promised myself I would be with him on this journey for a year, and if he doesn't stop with his selfish ways, I'm going to have to go my separate way. Maybe I'm just spoiling him too much? Or maybe I just get on his nerves and someone else could do a better job. I know it sounds selfish, but I can't fix someone that is impossible. I give him all the support that I can and it's not enough. I know that anxiety medication would help him more than anything while we wait, but he's not going to try it. Just keep your fingers crossed that the 5 more months of nicotine freeness will do the trick. That's all I feel that we got.

Thanks again for your wonderful response!

[Caspiana in reply to purplegarden33]

Oh good gracious purplegarden33 . I'm sorry to sound mean , but he sounds rather immature. And you say he talks alot? Does he actually listen to what the doctor has said? Perhaps bring up the exercise next time you go to the doctors. It's really not healthy for him to sleep the day away and stay up all night. What does he do whilst you are asleep??

You are NOT being selfish at all. I have a feeling it's the other way round. 😑The last thing you want to do is let your life slip away trying to help someone who won't help themselves. You cannot get time back once it's gone.

I hope it gets better for you.

Cas xx 🍀🌿

[purplegarden33]

Thanks so much Caspiano. He actually does listen to the doctors. That's something I can brag about. And yes, I agree that he is selfish and too spoiled. I ponder a lot on whether or not I'm wasting my time, but I know I can't give up on him; not until we see if this is going to work. If it doesn't, then we'll keep trying to find a solution. If he's still in this selfish impossible mode, then I'm afraid he will be continuing his journey without me. I truly would hate to do it, but I have little ones relying on me too, and they need a positive mommy, not depressed. lol

[Caspiana in reply to purplegarden33]

100% Agree!! xx 😊

[Dublinn]

My suggestion is get him to a doc that will start from scratch with testing. Something is causing this whether its in his head or physical or a combination of both. Speaking from experince I thought my mental fog through not breathing enough was actually me getting old and feeble. It wasn't! I have severe asthma, which can be triggered by the smallest of things (allergies and stress!) and also there is no wheeze to tell me. It can get depressing and a good doc will be mindful of this as well. Some days are good some are bad but you will need help! Maybe talk to the doc separately about your struggle first, on your own. I'm not suggesting it will fix everything but they may give you tips on what to do in a manner that won't undermine confidentality. For me it was getting a dog believe it or not....it made me get out and walk more even though I am allergic she made me feel better.

[Corin1950]

Yes I agree too. For the sake of your children and yourself give him a reasonable time limit and stick to it.

Wishing you all the best

X