When should one go to the Emergency Room?

[Rene' Koenig]

Over he past several months I have had episodes where I was dizzy, lightheaded, starting perspiring and I felt as if I were going to pass out. And my heartbeat is irregular. Actually felt as if I took another step, I would collapse. After a while, the feeling passes, but then I am whipped! Felt like that again yesterday at an auction. I was outside and it was hot and I was walking around. (I normally spend VERY little time outdoors when it is hot). Even after I got into the air conditioned truck, I was having trouble breathing and was still lightheaded. That "passing out" feeling went away, but I still felt crummy for the next several hours. My pulse was in the low 50's. I actually thought about going to the ER, I felt so bad...but then didn't, because the episode went away. Obviously, I'm fine now. My question is, how do you know when something may be wrong and should go to the ER...or when it's "normal" for us & you'll get over it and shouldn't worry? All the other episodes happened when I was walking or shopping. Last week it happened when I was walking into Wal-Mart. Didn't think I could make it back to the car, and knew I couldn't push the cart and shop. So, I just stood there at the shopping carts, hanging onto one for dear life until the feeling passed! Looking like a fool I'm sure. One day at work, I was pushing a lady (in a wheelchair) back to her room, and I had to stop and leave her at the nurses station because I knew I couldn't push her one more foot. That kind of gives you an idea of what I'm doing when it occurs. Does anyone else ever get the same "lightheaded/passing out" feeling? What do you do? Sometimes I wonder if it's just because I'm out of shape. I'm sure it's not my medicine. I have been on Norpace and Verapamil for 13 or 14 years, before and after my myectomy. I'm not obstructed, and I saw Dr. Lever 3 years ago and he said that I was stable. Should a specialist be seen periodically? Even though a myectomy or ablation is not needed?
Sorry I rambled, but I could really use some input. Thanks!

Rene'

[Pam Alexson]

Re: When should one go to the Emergency Room?

Hi Rene',
You seem to have a lot going on here causing you a lot of discomfort. The rule of thumb is to have regular checks with your cardiologist as spelled out by his plan of care for you.
The fact that you had a myectomy and as of 3 years ago , "no obstruction" still warrants that you have regular checks if at all possibe , with your specialist. The goal told to me ( my myectomy was Oct. 2003) is to eventually get to the point where I will only need checks with my specialist 1 time per year. I just had a check at month 10 and will be checked in 6 months again. A myectomy does not cure HCM as you probably know. It is now possible after removal of obstruction for the cardiologist to evaluate and separate the symptoms that you have and determine if they may be susceptible to treatment and if they can be repressed by medication that may not have worked on your heart when it was obstructed. A regular relationship with your specialist will ensure that he has been aware of the increase in symptoms and any changes that possibly could occur resulting in alterations in your plan of care.
It is hard to determine when one should go to an ER. I personally would rather see you go and be evaluated so that if there is a serious problem the avenue of communication and delivery of care to you can begin and nothing tragic happens. The ER visit would start that interaction for evaluation by a specialist .
If you feel strongly that you are not in an emergency situation and your symptoms can be controlled by temporary measures such as those that you seem to employ , then follow that path and also make the appointment to follow up. Be sure to inform your doctors office that it has been 3 years and you are experiencing some very limiting symptoms so that they can try to get you in as soon as possible.
Yes many do have varying symptoms that often continue after myectomy . Surgical goals always aim for the best outcomes but the reality is that this disease varies from person to person and sometimes the end result is, that quality of life is not always restored to the same degree and vigor to satisfy each individual .
As you know there are many measures to follow for those of us with HCM. Some get by with very little attention to detail and some must follow the smallest of detail to insure that an activity can be enjoyed without impacting severely on our comfort. Remembering that rest when tired is necessary , proper hydration at all times is another, care and safety in various climactic conditions , limiting stress to a minimum and one that I just dropped the ball on myself : not being so much of a martyr that I won't ask for help doing a laborious task,thereby causing myself a whole heap of trouble. There are others of course that you might be aware of for you.
Take care and let us all know how you get through this. If you need to call Lisa you know the number is at the bottom of the page.
Pam

[Laoshur]

Re: When should one go to the Emergency Room?

Rene,
It struck me as strange that you wrote this just now because I just came home to try to rest after having several of these episodes today. I don't have any answers other than to say that, yes, other people have these episodes. Since I have not had a myectomy, I cannot say whether that should stop these, but somehow I am not sure they are related. I have exactly the symptoms that you relate, but not necessarily all at exactly the same time. For example, I had a couple of bouts of irregular heart beat fifteen minutes before the sweating and faintness. I was on my way to the dentist when this all hit. She gave me a tissue to wipe my face because she could see that I was sweating and it turned quite yellow, I had sweated so much. It is warm today, but not nearly that hot. Anyway, I am home now with a wet cloth on the back of my next, the air conditioning on full blast, and feeling much better, albeit a little wet still. I am also curious as to what would cause this.
Rhoda

[Sarah]

Re: When should one go to the Emergency Room?

It sounds to me like mild dehydration may be part of the problem. It is essential for HCMers to drink lots of water as the medication lowers your bp to sometimes very low levels. Just b/c your heart rate is low, it isn't always a good thing. 50 is on the low side. 60 is the bottom of the normal range.

Especially if you are not used to the heat, it affects you much harder and faster than you expect. Trust me! I know from experience.

You should definitely be getting regular check ups and a series of episodes like you describe also warrant a visit.

My ex-husband used to say, if you have to ask if you should go to the ER, you probably don't have to go. That being said, extremes of anything should be checked out (super low or high bp, pulse or pain or dizziness that doesn't go away in an hour or so).

take care,

S

[Linda]

Re: When should one go to the Emergency Room?

Rene, A lot can happen in 3 yrs. If I understood correctly, these problems have definitely increased recently. That's reason to be checked out. You checked your pulse and only found 50, if that's low for you, your doctor may want to do a Holter monitor. You could be having some issues with the electrical system in your heart causing an abnormally slow rate and not pumping enough blood. It's possible that if seen on the monitor, your rate would have been much faster but not really pumping enough blood with each beat to feel a pulse with each beat. So it could be any number of things, but the pulse rate you got when you checked is enough to call your doctor for, esp since you were feeling so bad. Good luck, please keep us posted. LInda

[Rene' Koenig]

Re: When should one go to the Emergency Room?

Thanks so much for you replies. Actually, I may have confused you a bit. I saw my regular cardiologist in June. He is 1 1/2 hours from here. If I were to go to the ER It would be here in town. I would have to see a Dr. that knows nothing about me...that's why I always wonder whether it's a waste of time to go or not. As for a specialist, I meant HCM specialist (I saw Dr. Lever 3 years ago). I'm sure he told me whether or not to follow up, but there was so much going on...he had referred me for a completely unrelated surgery at Cleveland Clinic...so I truely don't remember. Since he is such a very busy man, I didn't know if it was best to let him see people that are obviously in much more need of his time and expertise than I am! I never thought about it before, but the dehydration thing may very well be an issue. I need to do a better job about drinking water. I was diagnosed with HCM about 15 years ago, and absolutely no one has ever mentioning anything to me about the importance of proper hydration! I only know that from reading these posts! Thank goodness for the education by the HCMA! I did go to the store today and bought a case of bottled water. Hopefully that'll make a difference. Thanks!
Rene'

[Lisa Salberg]

Re: When should one go to the Emergency Room?

Rene'

Dr. Lever has plenty of time for ALL HCM patients that care to see him as there specialist - as do all of the other centers. Please do not think that because you are not in distress that an HCM center in not the place to be. When you are feeling well - it is just as important to let your HCM specialist see you as when you are having a hard time.

food for thought

Be well,
Lisa

[Rene' Koenig]

Re: When should one go to the Emergency Room?

Lisa,
Thanks for the response. That was indeed my question. There are so many people that are in need of a myectomy, ablation or heart transplant...my complaints/concerns are pretty minor in big picture! I just wasn't sure if it was appropriate to bother an HCM specialist with something seemingly minor. I do think I will call soon.

Thanks!
Rene'

P.S. I received my book. I read it cover to cover twice already! It's VERY informative. Wouldn't it be nice if every single person that is diagnosed with HCM be suggested this book and website by their Cardiologist? Wouldn't it be nice if every single Cardiologist KNEW about this website and book?

[Debbie]

Re: When should one go to the Emergency Room?

Hi Rene,

What a coincidence that you would ask about feeling that way. Just Thursday before last, I awoke in the middle of the night feeling exactly the same way. My heart was hurting, I was having cold sweats, was feeling extremely dizzy and shaky, and SOB.

Long story short, after getting a glass of water, then eating some M&M's and drinking some OJ, (I thought I had low blood sugar ), the symptoms only got much worse. I just was feeling more and more like I was going to pass out, just from sitting up, or just lifting my head.

I told my husband I thought we better go to the hospital. And I tried several times to get off the bed, but had to keep laying back down in order not to pass out, and just to be able to breathe. I have a tiny house, (5 rooms), and never has the front door looked so far away. Finally, I told him he better just call 911, and boy did I hate that.

The paramedics kept saying, "man is her heartbeat irregular". And I was in A-fib. When I got to the hospital, I promptly threw up the M&M's and OJ, and about 4 hours later, my heart decided to behave, and stopped doing the A-fib dance on its own. I was released a couple hours later. (talked to my cardilogist later that morning). I have to increase my beta-blocker @ night, and if this continues, he said that we may have to adjust my meds. Am on ToprolXL in morning, and metoprolol at night.

I read all the time about people who are in A-fib constantly... I think, my goodness, I must be such a baby. I literally couldn't function.

Anyway... I wonder if that's what you are going through???

And I know what you mean about everybody else going through so much. That's why I haven't posted about this, either.

But your symptoms don't sound minor. They are causing a major disruption in your life on a regular basis.

Hope you get to the bottom of this soon, take care.

Debbie

[Burton Borrok]

Re: When should one go to the Emergency Room?

Hey folks,
If you find something happening that hasn’t happened before, or if it has happened, but not to this degree – well, by all means go to the ER. If it’s nothing, or only minor they will release you to go home. They will not beat you, belittle you, or embarrass you. That advice was given to me by a cardiologist I had a great deal of respect for – many years ago.

On the other hand, if it is of significance, and you decided not to go, you do not know how nasty the consequences could be. I do not know a better example of, “An ounce of prevention saves a pound of cure.”

If it is a repeat of something that has happened before, and was only minor, and this is no worse, at least let your cardiologist know about it. Maybe an adjustment of your meds can fix the problem, or maybe he would want to see you to check it out further.

This is not some ridicules game of chicken. Pay attention to what your body is saying.
Burt

[Debora from Brazil]

Better safe than sorry!

What a great topic this is! I've often wondered it myself. After having had three OHS, I've kind of learned how to deal with my palpitations. I remember some pretty scary times when I just felt as if that was the end for some of them were rather strong and lasted for several minutes. I could breathe but the air didn't seem to go into my lungs and then I started shaking, and the more worried I got, the worst it became until I took a tranquilizer and it went away. It used to happen a lot as a result of stress or anger. While I was living in Scotland, my husband used to call the emergency doctor every time it happened and it always turned out to be nerves for I was contantly depressed because I was away from home. I still feel it now and again, but since I've been under a lot of pressure ever since I heard my mitral valve is deteriorating, I guess it's only natural. Last night I was away to my aunt's house for the night and suddenly I began to feel that pounding and my heart started racing. I didn't want to say anything so, I just took a deep breath, had my propranolol and prayed that it would go away. A few minutes later, I felt it going down and becoming stable shortly after it. It had been a very hot day and I had taken 4 busses to get there, so, it all must have affected me a bit. In my opinion, you have to watch how often it happens and also if it's after you've been through emotional stress or some situation which could've lead to it since us heart patients have our limitations as you all know. It's important to see a cardio regularly and update him on whatever you've been feeling, no matter how stupid it might sound. Good luck and take care!

Débora from Brazil