Acute Respiratory Failure? Am I Just Being Paranoid?

[trappedat20]

I know that acute respiratory failure is one of the few listed causes of death for people with dysautonomia. I don't know if I'm just being paranoid but I don't know if I should worry about this. As some of you may know my dysautonomia has progressed a lot in the past few months. The slightest things make my heart go so crazy that I stop breathing, turn blue, and either pass out or have a seizure. I feel like I can't get enough oxygen.

This is what I found on healthline "The symptoms vary according to how healthy you are. But most people acute failure of the lungs with low oxygen levels will experience:

• inability to breathe
• bluish coloration in your skin, fingertips, or lips
• passing out

When carbon dioxide is high, your heart rate may increase. You may be confused about your surroundings, who you are, and others around you"

That's exactly what happens to me so I'm worried. When does it get to the point that you actually die from it? This happens to me several times a week now. Is this related to my heart rate like my neurologist was saying or is there some kind of test that measures oxygen levels and stuff that I should get? Please, I'm really worried. The slightest things are causing this to happen now. Could I actually die from this or will I always start breathing again? I stop breathing for a minute when I have the seizures and I'm worried that one time it will be too long and I won't come back to it or something.

[gackedo]

You could buy a pulse oximetrer. It measures your oxygen saturation as well as your heart rate. You can buy it at a drug store, Walmart, etc... I saw one at Vostco the other day.

[corina]

MakeMeErised, I think you need to check with your doctor to figure this out. I'm not sure what your diagnose is but when you're having these kind of serious problems your doctor is the one to answer your questions!

[gjensen]

Yes, you can get an oxygen meter. I have one.

But . . . .this is definitely something to work through with your doctor.

[trappedat20]

@Corina I went to the doctor today and he basically told me he was at a loss what to do with me at this point and that I need to talk to my neurologist for now on about this because he doesn't know what to do anymore. My neurologist is going to run an Echocardiogram and a 24hour holter monitor but beyond that he doesn't seem to really know either and is having me referred to Vanderbilt.

@gackedo + gjensen thank you I will look for one of those. That sounds like it will be very helpful in helping me figure out what is going on with my body.

[sue1234]

You should definitely even see a different specialist. This may OR may not be related to POTS in particular, so seeing maybe even a variety of specialists, possibly the root cause can be discovered.

[trappedat20]

@Sue1234 what kind of specialist do you think I should see for this? Does it sound like it could be something else? My neurologist kind of brushed it off as part of the dysautonomia but I'm getting progressively worse and nobody seems to be really doing anything to help me.

[Freaked]

I highly suggest the oximeter. I get terrible shortness of breath and if it wasn't for the oximeter I would have thought I was on my last legs many times. Hope the neurologist helps you get to the bottom of things. I know how it is for doctors to say they don't know what to do and leave you scared.

[Chaos]

I'm not sure an O2 sat monitor would be helpful as it doesn't measure CO2 levels and that's what you would want to be measuring.

Do you have a cardiologist or pulmonologist you have seen or could be referred to?

[dkd]

Have you ever been evaluated by an electrophysiologist? I saw 10 different doctors when I first got sick and the EP cardiologist was the only one that had a clue as to what was going on with me.

[Freaked]

Chaos, curious why you say that? An O2 sat meter is what they use in hospital to grade the severity of asthma attacks, for instance.

[dkd]

I have one of those finger oximeters also. Its gives me a little peace of mind that my O2 is ok, so I can kind of ignore my shortness of breath

[Freaked]

Haha same dkd. My parents think I'm crazy, but they don't understand how extreme it feels.

[trappedat20]

@Chaos I don't have a cardiologist or pulmonologist although depending on what my holter monitor and echocardiogram say when I get them done I might be referred to one.

@Dkd I've never heard of an electrophysiologist. What do they do? Are they like a special kind of cardiologist?

@Freaked and @dkd I'm not sure if I'm more worried about it telling me I'm fine or if I'm more worried about it telling me I'm not fine. At this point I wish something would show up with blinking lights saying "Over here. I'm the problem. Now you can fix me" It would be especially nice for my husband to look at it when I'm having a seizure or passed out for him to know that I'm okay. Since I stop breathing and turn blue during them he's sometimes not sure what to do. I think it would be good for him to know when I'll be okay and when we should go to the hospital.

Does anyone know anything about this though? Is there a chance that this could turn into respiratory failure or is that something entirely different?

[gackedo]

I'm thinking that the 24 hour holter moniter will be really helpful to you. I know you say that your heart rate gets really high, esp when you go upstairs. All these episodes of tachycardia will be recorded and you will have a sheet of paper where you will be able to write down how you feel and what you are doing. When they analyse the recording they will look at everything during the whole 24 hours and will specifically look at what your heart is doing when you make comments.

And the reason that I suggested the pulse oximeter was not as a replacement for care from a physician but so that you would have concrete evidence to take to your physician.

Hang in there. We are all thinking about you. Hope you have a great movie night with your husband.

[sue1234]

Yes, I'm with Chaos and dkd. I think an electrophysiologist would be a good doctor to see, especially if they are like Dr. Suleman in Dallas that will test you until he finds the answer. But a pulmonologist might not find the answer, but should be able to "measure" the depth of your respiratory issues.

[trappedat20]

@Gackedo thankyou. I did. It was so nice to get out of the house and not be the sick girl for 2 hours. Wow, I'm really hoping you're right and it shows some concrete evidence about what is going on with me so that we can try to fix the problem.

@Sue1234 I just googled what a electrophysiologist is and I think depending on what my tests say and what the neurologist says it looks like something I should ask the neurologist about as far as referrals go. ty

[Chaos]

EP cardiologists are frequently the ones who seem to be most conversant with POTS in general, although that's obviously a pretty broad brush I'm painting with there.

Freaked- I'm saying that an O2 sat monitor might not be helpful in this particular case because MME is asking about a condition that is related to high CO2 levels. There are monitors in a hospital setting that measure CO2 in the blood but they are very expensive and not readily available like O2 monitors are. Otherwise it's done by drawing arterial blood gases I believe.

If you are turning blue MakeMe, it seems to me you don't need to worry about an O2 monitor; you know your O2 is low. I would suggest your husband either be trained in CPR or be calling 911 (or both) -if you are literally turning blue and stopping breathing when you pass out. Even if he has to call and cancel them this isn't something to mess around with. Seems like this has been a relatively rapid onset and a significant change in your condition that definitely needs further checking out. Just my opinion, for what it's worth.

[dkd]

On seeing an EP--ask your neuro to refer you to one. I was referred to a 'regular' cardiologist when I had my first episode. He did several expensive tests and left me with "everything's fine, you just need to exercise more". A few months later, when I had another episode, I call his office to see him again but he had left the practice. I explained my episode to the receptionist and she said "oh, you need to see Dr. W". He is the EP with that practice. He knew within a few minutes of looking at my previous Holter monitor records that I had dysautonomia. So, really I think seeing an EP is the way to go.

[yogini]

The symptoms you describe could be symptoms of POTS so I would not assume respiratory failure unless a doctor discussed this with you. Although it may be listed on the site I don' think it is very common (not to say you do or don't have it, only a dr can tell). If you are having respiratory problems you may also want to see a pulmonologist.

[trappedat20]

My husband and I seriously doubt this has anything to do with my lungs. It seems like all of this seems to be because of my heart rate acting like it's on crack and going to crazy extremes to the point It's pumping so hard that I'm not even getting any oxygen.

I've lost 2 doctors in 2 days. Yesterday my regular doctor told me he doesn't know what to do with me anymore and I need to see the neurologist from now on. Today my psychiatrist (who has been conversing with my doctor) told me that she doesn't want to see me anymore either. Apparently when I went to the hospital a few weeks ago it freaked all of my doctors out because everyone whose seen the records doesn't want to treat me anymore. Everyone's too scared to prescribe me anything too because they don't know how my body will react. I have seizures and pass out a few times a week, my liver enzymes were 836 for no apparent reason (they did all of the tests and I don't have hepatitis and my liver is fine but they don't know why it was so outrageous), and my heart rate was all over the place in the hospital. All of the obvious tests like an MRI of just my brain and a catscan came back fine though so the only thing they can think to do is to look into the heart rate stuff and see why it's doing that and making me have seizures and pass out. Everyone wants my neurologist to deal with me from now on. Depending on the results of my holter monitor my neurologist might send me to a cardiologist so depending on what the results say I will ask about the electrophysiologist because they look helpful.

My husband and brother in law are both trained in CPR and I normally try to yell to someone whenever I start to feel ill and like a seizure is going to come on so that someone can watch me and make sure I'm okay. I've gone over little signs with everyone in the house. Like If I call on the phone but don't say anything it means to come upstairs immediately because I'm getting sick. Or If I yell someones name in a panic but don't say anything aferwards it means to come upstairs because I'm going to get sick. I've already taught him not to cuddle with me or hug me during a seizure or fainting spell though. He thought it was comforting but I already feel like I can't get enough oxygen when it's happening and need my space. So now he sits at the end of the bed or by the stairs or wherever it happens to watch and make sure I'm okay. He says I always start breathing again though but if I don't start breathing again shortly after he will do CPR.

[Chaos]

Sounds like you have it under control...or as well under control as it can possibly be in such a situation. Really glad you have good support at home.

Sorry you had docs drop you like that. It's a sad commentary on the state of medicine today when docs can't (or won't) even attempt to help people because they're "afraid" to do so. Hopefully you'll find some who are more willing to be helpful in the near future. There are docs out there who haven't yet become such cowards. If they all do become that way, patients like us are in a world of hurt.

[gjensen]

I never got dropped by a doctor, but I seen them get uneasy and start pulling back. I eventually put pressure on a couple to see where they were at. They never came out and said it, but I knew where I stood. I politely dropped them. They were literally scared to do anything. I think the liability is a lot of it. Still these are not the ones we want to be seeing anyways.

I have a new cardiologist, GP, and neurologist. Still am looking to a Mayo trip. My new cardiologist has seen this before, sensible fellow, but his priority is referring you somewhere. I do think that he will be a good local contact. I hope anyways.

[trappedat20]

@ Chaos I really hope so. It makes you feel pretty hopeless when doctors give up on you, like you can't be fixed or something.

@ Gjensen it's sad that doctors are so scared of liabilities that they will literally just drop a patient. They should at least get them set up somewhere or order more testing or something. I understand not wanting to prescribe medication to a certain extent when serious stuff is happening and they aren't sure why, but it ***** that they just gave up on me when there are more tests left they could have done. I hope everything works out for you. Good luck.

[JuneFlower]

MakeMeErised- weird question…Have they tested you for poisons?