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Mystery Heart Illness
My son, age 15, will sometimes have episodes whereas he has a resting heart rate of over 160 beats a minutes for several minutes. He will have a series of these episodes over a period of days then he will be fine for a few days or even a few weeks.
If you put your hand over his chest while he is having an episode, you can feel his heart pounding so hard as if he had been running and suddenly stopped. Sometimes instead of a fast heartbeat he will have slow and hard heartbeat.
The episodes leave him extremely weak, especially in his legs. He is also starting to have throbbing pain in his chest during these episodes and arm pain.
I have taken him to 2 Cardiologists that have done EKG's, Echo Cardiograms, and heart monitors. Even though they caught one of his episodes whereas his resting heartbeat was 163 beats a minute for 15 minutes, the doctors said it was no big deal because the heartbeat, although fast, was normal and his heart is structurally sound. He suggested I take him to a psychiatrist.
My son continues to get worst and I feel so lost. I'm hoping that someone on this forum might of had some similar experiences or may of heard of something.
My other son has a very rare illness that no one could figure out. Finally someone on another forum similar to this one nailed it and saved his life.
Thanks in advance! I appreciate you taking the time to read my post.
If you put your hand over his chest while he is having an episode, you can feel his heart pounding so hard as if he had been running and suddenly stopped. Sometimes instead of a fast heartbeat he will have slow and hard heartbeat.
The episodes leave him extremely weak, especially in his legs. He is also starting to have throbbing pain in his chest during these episodes and arm pain.
I have taken him to 2 Cardiologists that have done EKG's, Echo Cardiograms, and heart monitors. Even though they caught one of his episodes whereas his resting heartbeat was 163 beats a minute for 15 minutes, the doctors said it was no big deal because the heartbeat, although fast, was normal and his heart is structurally sound. He suggested I take him to a psychiatrist.
My son continues to get worst and I feel so lost. I'm hoping that someone on this forum might of had some similar experiences or may of heard of something.
My other son has a very rare illness that no one could figure out. Finally someone on another forum similar to this one nailed it and saved his life.
Thanks in advance! I appreciate you taking the time to read my post.
jrbon - Thank you so much! I suggested POTS to the Cardiologist and he tested my son's heart rate going from a laying down position to sitting up. Then from sitting up to standing up and we saw some very big increases. If I had not of suggested this,he would not have done this test. Thank you so much for pointing us in the right direction. We have been struggling with this for the last 4 months and I am so glad they actually found something.
The increases were not quite enough to be POTS, because it there has to be an increase of 30 bpm and we were just under that. The actual diagnosis was Orthostatic Hypotension.
The increases were not quite enough to be POTS, because it there has to be an increase of 30 bpm and we were just under that. The actual diagnosis was Orthostatic Hypotension.
But the thing is, for him to have a primary 02 problem, there has to be a reason why. If there is nothing wrong with his lungs, he doesn't have asthma, etc.,etc., then it seems to me that most likely the tachycardia is primary, and the SOB is secondary to that. It also seems like a lung problem would have been ruled out with all the tests and exams he has had. The doctor can order a pulmonary function test, but that might be silly if his lungs sound fine under a stethoscope, and he never has SOB apart from these tachycardia episodes. BTW, do you know what diagnosis the cardiologists gave him?
A word of caution if I may? We, including myself are trying to find an answer or clues for you and your son. I have noticed there are lots of ideas being thrown in which seem to be getting wilder by the minute. I am not a cardiologist or a paediatric specialist, I wonder if any of the others trying to help you also have any real medical knowledge? I am a retired nurse who has suffered two heart attacks before age 46. So with a little clinical knowledge and personal experience I am very aware you require a secure diagnosis by a professional in cardiology. We are all aware that internet diagnosis can be a dangerous and usually incorrect way of getting that diagnosis, sending you down frightening paths that really has nothing to do with your sons symptoms at all. I would strongly suggest you put your efforts in to finding a specialist that you have confidence in to diagnose your sons condition , so you can ask your questions, find solutions and hopefully put you and your sons mind at rest. They have, after all have spent many years gaining clinical knowledge and expertise. Whereas we ,with the best will in the world are just second guessing. Its too important an issue for us amature's to try and be an instant expert. Good luck and best wishes.
When I'm having tachycardia, I get symptoms similar to that if I try to move around and do very much. Actually, I feel like I'm about to pass out. But if I stay still, I'm fine except for the tachycardia. For me, I think the symptoms occur because the heart chambers aren't filling properly during the tachy episode. But if your son has those symptoms when at rest, then maybe it is a primary 02 issue, and the tachycardia is secondary to that. You could check out his 02 saturation by buying a pulse oximeter and using that to check it. I think you can get them for as low as $20 to $30 nowadays.
A couple more symptoms have come up that may help. He is also experiencing shortness of breath. The shortness of breath seems to have become much worse recently.
Last night the shortness of breath and palpitations kept him up all night long. I noticed that when he was breathing fine his heart would settle down somewhat. But his heart rate would cycle up with his shortness of breath. He also gets nausea and will sometimes throw up when this happens.
So I'm wondering if it could be more of an oxygen problem and less of a heart problem?
Last night the shortness of breath and palpitations kept him up all night long. I noticed that when he was breathing fine his heart would settle down somewhat. But his heart rate would cycle up with his shortness of breath. He also gets nausea and will sometimes throw up when this happens.
So I'm wondering if it could be more of an oxygen problem and less of a heart problem?
Hi jrbon,
Thank you so much! POTS is an interesting avenue to investigate. Since my other son has RSD (POTS' sketchy sibling) this is certainly worth checking out. He seems to have a lot of the symptoms, but is missing some also. But I know from going through this the first time around that all the symptoms don't always initially present themselves.
Phoenixblyth,
I will certainly check out SVT. I'm not familiar with SVT yet, but I will after I put in the research tonight - Thanks!
I realize that these types of illnesses are difficult for doctors to diagnose. I'm hoping that if I can do the research and ask some intelligent questions about them on our next visit that it may spur his thinking.
Thank you so much! POTS is an interesting avenue to investigate. Since my other son has RSD (POTS' sketchy sibling) this is certainly worth checking out. He seems to have a lot of the symptoms, but is missing some also. But I know from going through this the first time around that all the symptoms don't always initially present themselves.
Phoenixblyth,
I will certainly check out SVT. I'm not familiar with SVT yet, but I will after I put in the research tonight - Thanks!
I realize that these types of illnesses are difficult for doctors to diagnose. I'm hoping that if I can do the research and ask some intelligent questions about them on our next visit that it may spur his thinking.
I agree it sounds like SVT. In Britain they teach patients with this condition a very simple non invasive way to reduce that tachycardia. They give the person a large syringe ( no needle attached ! ) they ask the person to blow hard into the syringe, this can slow the heart rate. Please don't do this without a Drs advice but its simple, anybody can do it and no side effects! Im not sure how or why it works but if you ask a cardiologist to explain to your son it will give him some control over these awful symptoms. good luck
it sounds like your son have abnormal heart rhythm. as soon as possible consult a cardiologist.
Skydnsr, Thank you so much for the reply!
That was a good question you asked about how it starts and stops. He said that before the episodes start his heart feels like it is full of energy and the dam is getting ready to burst. Then suddenly it will shift gears and take-off full speed. After a few minutes it will begin to taper off. It will continue to beat hard and he will have additional episodes. Over the next few days he will continue to have the hard beat that gets a little better and than worse again with occasional episodes. After a few days it stops. Then a few days later the cycle repeats.
Diet, that is a good suggestion. His older brother has a rare illness and food additives set him off. Consequently, we eat a very clean diet. BTW, I feel much better myself since I've started eating this way. You de-sensitize to the additives, but after you stop eating fast and processed food there is a huge difference.
I will re-post this on the other section I overlooked.
That was a good question you asked about how it starts and stops. He said that before the episodes start his heart feels like it is full of energy and the dam is getting ready to burst. Then suddenly it will shift gears and take-off full speed. After a few minutes it will begin to taper off. It will continue to beat hard and he will have additional episodes. Over the next few days he will continue to have the hard beat that gets a little better and than worse again with occasional episodes. After a few days it stops. Then a few days later the cycle repeats.
Diet, that is a good suggestion. His older brother has a rare illness and food additives set him off. Consequently, we eat a very clean diet. BTW, I feel much better myself since I've started eating this way. You de-sensitize to the additives, but after you stop eating fast and processed food there is a huge difference.
I will re-post this on the other section I overlooked.
I'm very sorry to hear that you got such an unhelpful response from the doctors. Did they at least give you a name for your son's condition? If you have a diagnosis, you can look up information about it. Knowing the diagnosis makes it easier to find out about treatment options, both standard and alternative. I'm wondering if it was supraventricular tachycardia (SVT). Do the episodes stop and start on a dime, without any warning or progression? If so, that sounds like SVT to me.
One thing that is lucky about your son's experience is that an episode was caught on a recording. Sometimes people have this type of tachycardia and can never manage to have it happen while they are being observed. That can be extremely frustrating. Sometimes people go for years and wear event monitors or Holters repeatedly, without ever having an episode that the doctor can look at. At least you know this isn't life-threatening, since two doctors looked at it and evidently agreed. Having the recording will let you get a third opinion, if you want. I would get a copy of the boy's complete cardiology records and keep them indefinitely. You never know when he might need that documentation He might get this resolved and go for a long time without any symptoms and then have something else pop up ten years later, and the records would be helpful.
Two other suggestions: you might try posting this question on the Heart Rhythm community of Medhelp.org, because even though a number of people here on the Heart Disease community know a lot more about heart rhythm issues than I do, and hopefully they will post, there are also some good people on Heart Rhythm who don't necessarily post here.
Also, I will just add that I have a similar condition to your son, and I finally figured out that it only happens when I eat something with a lot of MSG in it. MSG goes by many different names, and variations of it are found in many types of processed food, so it can be hard to avoid it, but I've finally learned how. MSG is a stimulant. It also keeps me awake at night. I have not had an episode of tachycardia since I found out about MSG. It only bothers people who are sensitive to it, and I am one of those. The easiest way to avoid it is to eat only homemade food. Convenience foods and restaurant foods are rife with it. If it's not MSG that is causing your son's episodes of tachycardia, there may be some other trigger -- either a food or just some kind of event. You will have to be a good detective to identify what the trigger is. With MSG, the symptoms typically hit about six hours after eating the offending food. Good luck.
One thing that is lucky about your son's experience is that an episode was caught on a recording. Sometimes people have this type of tachycardia and can never manage to have it happen while they are being observed. That can be extremely frustrating. Sometimes people go for years and wear event monitors or Holters repeatedly, without ever having an episode that the doctor can look at. At least you know this isn't life-threatening, since two doctors looked at it and evidently agreed. Having the recording will let you get a third opinion, if you want. I would get a copy of the boy's complete cardiology records and keep them indefinitely. You never know when he might need that documentation He might get this resolved and go for a long time without any symptoms and then have something else pop up ten years later, and the records would be helpful.
Two other suggestions: you might try posting this question on the Heart Rhythm community of Medhelp.org, because even though a number of people here on the Heart Disease community know a lot more about heart rhythm issues than I do, and hopefully they will post, there are also some good people on Heart Rhythm who don't necessarily post here.
Also, I will just add that I have a similar condition to your son, and I finally figured out that it only happens when I eat something with a lot of MSG in it. MSG goes by many different names, and variations of it are found in many types of processed food, so it can be hard to avoid it, but I've finally learned how. MSG is a stimulant. It also keeps me awake at night. I have not had an episode of tachycardia since I found out about MSG. It only bothers people who are sensitive to it, and I am one of those. The easiest way to avoid it is to eat only homemade food. Convenience foods and restaurant foods are rife with it. If it's not MSG that is causing your son's episodes of tachycardia, there may be some other trigger -- either a food or just some kind of event. You will have to be a good detective to identify what the trigger is. With MSG, the symptoms typically hit about six hours after eating the offending food. Good luck.
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Have you thought on POTS
http://en.m.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome