Sudden breathlessness at rest

[progers]

Hi all,

Does anyone experience sudden onset of breathlessness and a sensation they cannot get air, at rest? I experience this all the time, particularly when I am sitting in my car driving, or when lying in bed at night. I am not even walking when it happens! I just can't get to the bottom of it.

My Left Ventricular Diastolic Pressure is elevated at 22 mmHg (even after a myectomy), so I am wondering if even slight changes in loading pressures can bring on symptoms?? Any thoughts?

Cheers,

Paul

[Bucky]

I'm with you Paul. I can no longer lay flat at night without sucking for air. Also, much less frequently I'll be sitting still and all of a sudden get breathless.

All that said, I have no answers.....all are related to heart problems. Getting breathless at night when laying horizontal seems to be related to CHF. When I mention it to my cardio guy I get a blank stare.....

Let me know if you find THE answer.


Bucky

[caroline]

I have HCM and had these symtoms. Finally, I just got diagnosed with massively severe obstructive sleep apnea, so I have both conditions.

If you have a thick neck, are exhuasted all the time, wake up with your heart beating like it could brust, snore, etc. you need to explore if apnea is part of your problem. Everyone has apneas every so often. The problem is when you are struggling for oxygen through the night because you have so many apneas.

Try sleeping sitting up in a recliner. If this produces better rest, it is another indication apnea might be a problem-----

Your bed partner may be able to help you figure this out. If warranted, a sleep lab test will solve the mystery----

It's all a real puzzle-------------

[Pam Alexson]

http://www.medicinenet.com/edema/page3.htm

Left-sided heart failure, which is due primarily to a weak left ventricle, usually is caused by coronary artery disease, hypertension, or disease of the heart valves. Typically, when these patients initially come to the doctor they are troubled by shortness of breath with exertion and when lying down at night (orthopnea). These symptoms are due to pulmonary edema that is caused by pooling of the blood in the vessels of the lungs.

In contrast, right-sided heart failure, which often is due to chronic lung diseases such as emphysema, initially causes salt retention and edema. Persistent salt retention in these patients, however, may lead to an expanded blood volume in the blood vessels, thereby causing fluid accumulation in the lungs (pulmonary congestion) and shortness of breath.

In patients with heart failure due to weak heart muscle (cardiomyopathy), both the right and left ventricles of the heart are usually affected. These patients, therefore, can initially suffer from swelling both in the lungs (pulmonary edema) and in the legs and feet (peripheral edema). The physician examining a patient who has congestive heart failure with fluid retention looks for certain signs. These include:

pitting edema of the legs and feet,

rales in the lungs (moist crackle sounds from the excess fluid that can be heard with a stethoscope),

a gallop rhythm (three heart sounds instead of the normal two due to muscle weakness), and

distended neck veins. The distended neck veins reflect the accumulation of blood in the veins that are returning blood to the heart.

http://jaapa.com/issues/j20051101/pdfs/edema1105.pdf

READ THE DIFFERENTIAL DIAGNOSIS, section of this article.

[Seabee Vet]

I have suffered from this problem since 1995 or so. From 1992 until 2003 I worked out religiously at Health Clubs; lifting weights, riding stationary bikes, using virtually every piece of equipment I could get on. My strength increased dramatically, then I began having breathing problems. In 2003 I had to quit my 3 times a week workouts, because I spent more time trying to catch my breath than exercising. One set of Ten left me gasping for air for 15 minutes.

On January 22, 2007, I had a Myectomy, I went to 'Heart Rehab" after, 3 times a week for 4 weeks and did the bikes and tread mills, it felt good, but I was still exhausted after. Today, I can be fine one minute and trying desperately to find a place to 'plop' down the next, no warning except the feeling of my breath suddenly being sucked out of me. Sometimes my heart pounds 5 or 6 times then settles down and I sit with my hand(s) on my chest gasping.

I don't sleep well at night, but that is caused by PTSD, I do not have sleep apnea. My lungs have been tested and are excellent, I am very healthy thanks to my exercising and Military Training for being 63 years old...EXCEPT for my heart. Friends and relatives claim I'm 'simply out-of-shape and need to exercise' and I'll be fine.:rolleyes: They have no clue!!! Until I had the Myectomy at the VA Hospital, my VA Doctors, didn't believe anything I told them, they were shocked at the surgery. My whole life has been trying to convince people, "I am NOT Superman, I am a human being"!!!

[progers]

I have just been told by two doctors that my symptoms are probably being caused by AV dissociation/AV dyssynchrony (a type of "pacemaker syndrome").

This is where the atria and ventricles are out of synch and can result in heart failure-type symptoms. It can be caused by certain types of pacing (hence "pacemaker syndrome") as well as beta blockers and other drugs, and even conduction disturbances caused by myectomy.....AV dissociation can account for sudden onset of symptoms. It often occurs when the heart rate drops below a particular level, which causes the sinus node to fail and the AV node to kick in.

Apparently it is totally treatable with an pacemaker. It may explain why one minute I am great, the next feeling like I want to die.

Paul

[progers]

"Seabee" (bob?),

Have you seen an EP about possible rhythm problems like those I just mentioned? Your sudden onset of symptoms sound just like mine.

Let me know how it goes.

Paul

[Reenie]

Paul, I know it must be a relief to finally understand what's going on with your heart. I hope you are able to get treatment and are feeling much better soon.

[progers]

Thanks Reenie for you kind words - as usual. I am waiting to see what happens. My ICD/pacer will be put in on the 28th. I am praying that this "transforms" me, as one heart failure specialist recently suggested it would. It certainly makes a lot of sense given my symptoms. I can surf and exercize for hours sometimes, and then the next minute I am washed out, nauseous and having palpitations even when not exercizing.

Cheers,

Paul

[Pam Alexson]

Paul ..sorry to hear of all these bad symptoms and how poorly they make you feel.

I hope that you are all fixed up w/ the implant and soon will be feeling well enough to do all your aspire to.

I understand completely ..some days I am stronger feeling and most others I feel that washed out feeling that you describe so well.

I do feel that sensation that my sails could not find any wind even if it was right there in front of me. I just sit and feel I can not even stay awake or function and the air feels very thin . On top of it I get so cold and everyone says it is warm!

I asked my doc about the heart block for me( the whole asynchronization thing) and she said it was not sick sino- atrial node syndrome like is seen in a lot of elderly but is because of the massive med doses I have to take for the HCM , heart failure and chest pain symptoms. So it seems one thing gets treated and another gets effected...I guess we have no choice and if a pacing works then that is a good thing.

Let us know how you do and best wishes on the 28th.

Pam

[Seabee Vet]

"Seabee" (bob?),

Have you seen an EP about possible rhythm problems like those I just mentioned? Your sudden onset of symptoms sound just like mine.

Let me know how it goes.

Paul


Hi Paul,

I'm not sure what an EP is, but at the Veteran's Administration once you have the surgery you are no longer considered a 'heart patient'. You are returned to your 'Primary Doctor'. After my surgery, I was given an ECHO two days later, had my pacemaker checked 2 weeks after discharge and saw my primary 2 months later. That is all the follow-up care I have had.

I finally have an appointment with a heart doctor the 29th after complaining about the shortness of breath and general pains for the last year. The VA believes that as a Veteran, just like a soldier, everyone should "toughen up and deal with the pain". :mad: hoo-rah!!!

Bob

[progers]

Sorry bob, 'EP' means electrophysiologist. They are types of cardiologists who specialize in heart rhythm/electrical problems. Many people with HCM have rhythm problems (atrial fibrillation etc.) so we often end up seeing them.

Please let us know how you get on with your doctor visit.

Paul

[Seabee Vet]

After my Myectomy my heart rate dropped twice to 20 beats a minute. I was not aware of this until about 5 nurses would rush into my room asking what happened. Then they would tell me. The doctor made me an offer...I could stay in the hospital for 4 more weeks to see if it happened again or get a pacer. The pacer simply kicks in if my rate drops. Every 3 months I receive a call from San Francisco and they monitor it and yearly I go to the VA to have it checked.

The rapid rhythm only has occured 1 or 2 times since the surgery in January 2007. The biggest problem is the breathing. Living in Minnesota it is fairly dry in the winter and I have few difficulties until a storm comes, then the cold and humidity cause chest pain and shortness of breath. I usually spend the day sitting in a recliner, sometimes with a heating pad, and gasp for air. In the summer (coming now) I can barely walk across the room without gasping, I tire very easily and try to stay in the house. Fortunately, I was forced to retire in 2001 because of these problems, so don't have to go anywhere. But, I do get tired of sitting in front of this computer everyday. I used to be a sportsman, how can you not be living in Minnesota. I enjoyed deer hunting every November with my brothers, but can't walk in the woods anymore, besides the VA doesn't like me roaming around with a weapon because I have PTSD. BUT... I do work very hard at blocking out the memories of 15 months in Vietnam. :rolleyes:

[progers]

Bob, you have to get your symptoms treated. Are you on diuretics? Have you been diagnosed with Congestive Heart Failure? There must be something the docs can do, tweeking your meds etc. You need answers, I think, from proper HCM specialists and you shouldn't let your condition go on like this. I know all about PTSD, but what you are dealing has got to be incredibly hard.

Get well,

Paul

[marvwaschke]

The trouble with this d__n disease is you never know what it is going to do. I have not been able to sleep without my head elevated since I was a teenager in the mid sixties, even though I was not diagnosed with HCM until 2001.

I never know when it is going to get rough, and I imagine it is the same with you Paul.

I am frustrated right now because I have been enjoying a year of no chest pain and no SOB, but I have been fighting osteoarthritis, which has caused pain in normal activities like climbing stairs or getting out of cars. Last week, my GP prescribed Celebrex, which seems to have worked a miracle-- the pain is gone. I can climb stairs, I enjoyed working in my shop and the yard for the first time since 2006, everything is great, I mean really great, but the chest pain and SOB is back. At this point, I am glad to take the trade: chest pain and SOB are old friends (?) that I am used to. As Ramblin' Jack Elliot says 'Arthritis is a thing to miss.'

Anyway, what I want to say, is hang in there. You never know what will happen next. This disease is unpredictable and what is bad today, may be better tomorrow.
Cheers, Marv

[Seabee Vet]

Bob, you have to get your symptoms treated. Are you on diuretics? Have you been diagnosed with Congestive Heart Failure? There must be something the docs can do, tweeking your meds etc. You need answers, I think, from proper HCM specialists and you shouldn't let your condition go on like this. I know all about PTSD, but what you are dealing has got to be incredibly hard.

Get well,

Paul


LOL...No offense Paul. I have seen psychiatrists since 2003 and continue to see my VA doc once a month. My medication is Metoprolol Tartrate of which I take 1 100mg tablet 2x a day for my heart and Citalopram Hydrobromide (Celexa), 40 mg a day for depression. 15 months after the Myectomy I have FINALLY gotten a 'follow-up' interview with a heart doctor, tomorrow. Between the depression, startled reactions to noise (you should be with me on the 4th of July :(), mistrust of everyone, gasping for air without warning (this weekend was not good), chest pains, headaches, arthritis, gas prices, bills, food costs and an absolute fear to leave 'my bunker' alone. It's exciting being 63, forced to retire at 60 and earning less than $400.00 a month from the VA. Yes, I do get SSDI and my wife works on Commission, during the winter she gets about $1,000.00 a month.

And the frosting on the great cake is...Nobody cares, the VA keeps putting my PTSD Claim on the far back burner and tells me there is NOTHING wrong with me even though I have 'classic' PTSD symptoms. Our government, who keeps dragging their young men (and now women) off to fight their battles all around the world, discard us after we have given our all to them. They claim they are taking care of the Veteran's, but all they do is push us aside and hope we die before they have to support us.

Take care my friend.

[progers]

Bob,

I think it is disgraceful the way you guys are treated. I just cannot understand it. It's all because of saving money and some bean-counters and bureaucrats making the "hard decisions" to save money but sacrificing those who have served the country in the process. They would never get away with here in Australia. Veterans are revered over here and are considered to be the embodiment of the national character (i.e. the "diggers" who fought in Kakoda in PNG against the Japanese in WWII).

It is high time things changed in the States on this front. Maybe with a new government? I think there is going to be major change in the US in the coming years. Health care is one of the major concerns for most people and politicians have to act.

I hope things improve for you mate.

Paul

[Seabee Vet]

Bob,

I think it is disgraceful the way you guys are treated. I just cannot understand it. It's all because of saving money and some bean-counters and bureaucrats making the "hard decisions" to save money but sacrificing those who have served the country in the process. They would never get away with here in Australia. Veterans are revered over here and are considered to be the embodiment of the national character (i.e. the "diggers" who fought in Kakoda in PNG against the Japanese in WWII).

It is high time things changed in the States on this front. Maybe with a new government? I think there is going to be major change in the US in the coming years. Health care is one of the major concerns for most people and politicians have to act.

I hope things improve for you mate.

Paul

:D THANKS PAUL,

I spent some time with Aussies in 'Nam, they were GREAT guys, we 'Yanks" had the greatest respect for them and they liked us "Seabees" because we ALWAYS had cold beer close by.

We have a web site www.military.com (http://www.military.com) and you should hear the comments on there. My problem is TOO many of them think Bush is a god, they are pro-Republican...not matter what. I won't go any further with that, but I AM afraid no matter who's elected in November, things aren't going to change much. McCain (a Vietnam Vet and POW) is a Bush clone, Obama wants to pull our military back to our shores and 'screw' the rest of the world and Hillary just wants to raise everybody's taxes, that means we all will owe the rich employers money on for our paychecks. Meanwhile its a known fact the Veteran's Administration keeps ignoring it's veterans hoping they will die before they have to give them any of the billions of dollars allocated to us.

But, we're getting off the original subject here and I start getting angry. So, if you'd like to continue e-mail me through the "Private Message" thread and we can really get it on.