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ventricular tachycardia my daughter
Hello everyone, thank you for reading this post.
I'm so confused and I'll try and keep this as short as possible.
My daughter now 20yrs old was recently diagnosed with Postural Tachycardia. She was given heart halter for a month which was full of episodes, we were told her heart rate was up in the 180's on several occasions. The doctors put her on several beta blockers which were just not cutting it so she is now on a calcium channel blocker for the past 3 months which we thought was working. They did a tilt table test on her which she failed miserably and quickly. Within 20 min. her heart raced to 197 beats a min. and they said she passed out but my daughter said she never lost conscientiousness and she did know everything they said so I don't know for sure who is right. She said her hands and face went numb and she did vomit all over herself too. So here's the deal she ended up being diagnosed with Postural tachycardia but I don't think this is right and neither does she...but then who are we. Her heart rate will sky rocket for no reason at all, she doesn't have to even be out of bed for it to occur, she can be up for several hours before it happens (there seems to be no rhyme or reason here. (Oh yeah I forgot she has had chronic high blood pressure too).
So we thought this new calcium channel blocker was working fairly well until Saturday, now don't get me wrong she's continued to have what we call little episodes but nothing like what happened the other day.
We were out shopping at Wal Mart and were on our way out when everything blew up. Let me back up (sorry) when she woke up that morning she said "mom my head feels strange" okay that's an alarm for sure but she never really feels well and this is not out of the norm for her. I could see she was getting confused in the store and I could see her eyes didn't look right before we ever left the house but again not abnormal for her. When she gets like this she'll become increasingly confused and it's like taking my grandma shopping as in she wanders off, she can be looking at me but not be able to find me, she hears my voice but she says it sounds muffled or tunnel like. When this happens and believe me it happens fairly often I can usually get to her and she will sit down wherever she is or we know she's going to pass out. I can sit on the floor with her and talk to her and wait until she is able to get up and go again and at this point we hurry and check out. Saturday we didn't get this chance. I was finishing up getting some fabric and ribbon cut and she was behind me waiting. I thought I heard her say mom but it was so faint that I thought well she'll holler at me if she needs me and I'm hearing things or something. What finally did catch my attention was the cart being jerked. I turned around and she was already on the floor, sitting on her bottom, extremely flushed, the top part of her body covered in hives, sweating, clammy and her eyes looked stranger than her normal strange. I immediately reached for her wrist to see what her pulse was but as usual with her it's very difficult to find her pulse even for the nurses. I reached up and touched her neck and found it POUNDING and was so fast I couldn't count to be honest. I began to fan her and try to talk her out of this as we always do but nothing was working. The Manager of Walmart was who happened to be the one in fabrics asked what she could do and I told her we needed air so she put a fan on her face. My daughter was getting worse and FAST and forgive me because I can't remember exactly how it all happened because I became very afraid. I remember the Manager and I kinda pulling her down to lie on the floor because we both could see she was headed there anyway, she put a large spool of yarn under her head but she kept saying "I'm afraid she's going to crack her head open" so she kept trying to hold onto her head for me. All at once my daughter let out this blood curdling scream and said "momma I can't feel my hands, I can't open my hands" I looked at her hands and they were in this twisted position and stiff as they could be as were her arms. She was kind of jerking around on the floor as in I thought she must be having some kind of seizure but her I remember thinking her eyes weren't rolled back in her head and why is it only the top portion of her body?? She was crying and every once in a while she'd say "momma I can't open my hands, I can't feel my hands or face, and it hurts so bad. I later found out she was referring to her left side of her jaw and a little chest pain. Everything was worse on her left side than the right. This episode all total from the time she went to her knees was probably 25 to 30min. The EMT's finally arrived and by this point she was on her way back to me. Her heart rate was only 115 at that point but she'd been on the floor like I said a good 25min or more. They checked her BP and I have no idea what it was, they checked her blood sugars which was 84 (fine), everything was going back to normal. My daughter didn't want to go to the hospital so we declined and made the decision to call her heart doctor Monday morning, was this right or wrong I wish I knew. She's been in bed the rest of the weekend and still complaining about "brain fog" and general all over not feeling right.
If any of you have any idea what is happening or what to do please, please help me. Thing is she's got a ton of medical issues, kidney disease (both are calcifying), kidney stones, severe endometriosis, mixed connective tissue disease and unexplained Severe bone pain (mostly knees) it's been there since she was 3yrs old and causes her to have to use a walker or cane sometimes.
I won't lie that was the most terrifying experience I've had with her and we've had a LOT of terrifying surgeries, cancer scares etc.
I'm sorry this is long but I tried really hard to keep it short.
PLEASE if any of you have any idea what is happening PLEASE Help.
I thank you in advance.
O so sorry but just remembered she also has unexplained vitamin b levels that will NOT hold no matter what we do. She's been getting periodically weekly injections for several weeks at a time, then we go back to monthly but it won't hold regardless. I have Systemic Lupus, Vascullitis of the Central Nervous system. All the females on my side of the family myself included have irregular heart beats which can sometimes get pretty out of whack but NONE of us have anything like this.
God bless,
Klarity
I'm so confused and I'll try and keep this as short as possible.
My daughter now 20yrs old was recently diagnosed with Postural Tachycardia. She was given heart halter for a month which was full of episodes, we were told her heart rate was up in the 180's on several occasions. The doctors put her on several beta blockers which were just not cutting it so she is now on a calcium channel blocker for the past 3 months which we thought was working. They did a tilt table test on her which she failed miserably and quickly. Within 20 min. her heart raced to 197 beats a min. and they said she passed out but my daughter said she never lost conscientiousness and she did know everything they said so I don't know for sure who is right. She said her hands and face went numb and she did vomit all over herself too. So here's the deal she ended up being diagnosed with Postural tachycardia but I don't think this is right and neither does she...but then who are we. Her heart rate will sky rocket for no reason at all, she doesn't have to even be out of bed for it to occur, she can be up for several hours before it happens (there seems to be no rhyme or reason here. (Oh yeah I forgot she has had chronic high blood pressure too).
So we thought this new calcium channel blocker was working fairly well until Saturday, now don't get me wrong she's continued to have what we call little episodes but nothing like what happened the other day.
We were out shopping at Wal Mart and were on our way out when everything blew up. Let me back up (sorry) when she woke up that morning she said "mom my head feels strange" okay that's an alarm for sure but she never really feels well and this is not out of the norm for her. I could see she was getting confused in the store and I could see her eyes didn't look right before we ever left the house but again not abnormal for her. When she gets like this she'll become increasingly confused and it's like taking my grandma shopping as in she wanders off, she can be looking at me but not be able to find me, she hears my voice but she says it sounds muffled or tunnel like. When this happens and believe me it happens fairly often I can usually get to her and she will sit down wherever she is or we know she's going to pass out. I can sit on the floor with her and talk to her and wait until she is able to get up and go again and at this point we hurry and check out. Saturday we didn't get this chance. I was finishing up getting some fabric and ribbon cut and she was behind me waiting. I thought I heard her say mom but it was so faint that I thought well she'll holler at me if she needs me and I'm hearing things or something. What finally did catch my attention was the cart being jerked. I turned around and she was already on the floor, sitting on her bottom, extremely flushed, the top part of her body covered in hives, sweating, clammy and her eyes looked stranger than her normal strange. I immediately reached for her wrist to see what her pulse was but as usual with her it's very difficult to find her pulse even for the nurses. I reached up and touched her neck and found it POUNDING and was so fast I couldn't count to be honest. I began to fan her and try to talk her out of this as we always do but nothing was working. The Manager of Walmart was who happened to be the one in fabrics asked what she could do and I told her we needed air so she put a fan on her face. My daughter was getting worse and FAST and forgive me because I can't remember exactly how it all happened because I became very afraid. I remember the Manager and I kinda pulling her down to lie on the floor because we both could see she was headed there anyway, she put a large spool of yarn under her head but she kept saying "I'm afraid she's going to crack her head open" so she kept trying to hold onto her head for me. All at once my daughter let out this blood curdling scream and said "momma I can't feel my hands, I can't open my hands" I looked at her hands and they were in this twisted position and stiff as they could be as were her arms. She was kind of jerking around on the floor as in I thought she must be having some kind of seizure but her I remember thinking her eyes weren't rolled back in her head and why is it only the top portion of her body?? She was crying and every once in a while she'd say "momma I can't open my hands, I can't feel my hands or face, and it hurts so bad. I later found out she was referring to her left side of her jaw and a little chest pain. Everything was worse on her left side than the right. This episode all total from the time she went to her knees was probably 25 to 30min. The EMT's finally arrived and by this point she was on her way back to me. Her heart rate was only 115 at that point but she'd been on the floor like I said a good 25min or more. They checked her BP and I have no idea what it was, they checked her blood sugars which was 84 (fine), everything was going back to normal. My daughter didn't want to go to the hospital so we declined and made the decision to call her heart doctor Monday morning, was this right or wrong I wish I knew. She's been in bed the rest of the weekend and still complaining about "brain fog" and general all over not feeling right.
If any of you have any idea what is happening or what to do please, please help me. Thing is she's got a ton of medical issues, kidney disease (both are calcifying), kidney stones, severe endometriosis, mixed connective tissue disease and unexplained Severe bone pain (mostly knees) it's been there since she was 3yrs old and causes her to have to use a walker or cane sometimes.
I won't lie that was the most terrifying experience I've had with her and we've had a LOT of terrifying surgeries, cancer scares etc.
I'm sorry this is long but I tried really hard to keep it short.
PLEASE if any of you have any idea what is happening PLEASE Help.
I thank you in advance.
O so sorry but just remembered she also has unexplained vitamin b levels that will NOT hold no matter what we do. She's been getting periodically weekly injections for several weeks at a time, then we go back to monthly but it won't hold regardless. I have Systemic Lupus, Vascullitis of the Central Nervous system. All the females on my side of the family myself included have irregular heart beats which can sometimes get pretty out of whack but NONE of us have anything like this.
God bless,
Klarity
You mentioned that your daughter has passed 50 kidney stones. If she hasn't already been checked for parathyroid problems you might want to check into this with her doctor.
hope that makes sense...some how my sentence with dr grubb's research is below my info on vanderbilt so sorry :(
I'm not sure what type of insurance you have but if you can, try to get her in to see Dr. Blair Grubb the leading autonomic specialist in the US; I think he's in Ohio. His wait list is quite extensive and many wait 6 months - 1 year to see him. Google his name and you'll find all kinds of info on him and his research. My dr's have all recommended Vanderbilt in TN, but financially I just can't make the trip but others have done well there and they have a great autonomic clinic.
He has quite a bit of articles on the NDRF website (ndrf.org) national dysautonomia research foundation and check out our DYS forum here http://www.medhelp.org/forums/Dysautonomia-Autonomic-Dysfunction/show/266 also the Dysautonomia information network (dinet.org) has more info also.
as a dysautonomia patient I can tell you no two of us have the same symptoms or experiences; what happens with me may not happen with another ANS patient and vice versa with the same dx.
He has quite a bit of articles on the NDRF website (ndrf.org) national dysautonomia research foundation and check out our DYS forum here http://www.medhelp.org/forums/Dysautonomia-Autonomic-Dysfunction/show/266 also the Dysautonomia information network (dinet.org) has more info also.
as a dysautonomia patient I can tell you no two of us have the same symptoms or experiences; what happens with me may not happen with another ANS patient and vice versa with the same dx.
Hi Klarity,
Postural Tachycardia is a condtion in which the body is unable to regulate a person's bp upon changes in postion. The bp drops, the heart over compensates by pumping faster and the patient starts to loose consciousness because the heart is not pumping effeciently and thus the person is not getting the proper amount of oxygen. It is this drop in bp that is likely the cause of your daughter feeling like the world seems muffled to her and to you she seems out of it. With this condtion the person's body has trouble pumping blood effeciently while a person is standing which could cause them to pass out while standing. This sounds like what your daughter has. It is possible while she is laying she changes head position and thus changes her hearts ability to pump blood efficiently which again causes her bp to drop causing her heart to start beating faster to compensate. It is the same principle as the tilt table test. I would think if she had a different type of arrythmia, since she was having episodes while on the holter monitor, it would have shown up for the doctor. The holter monitor is actually a better way of defining the type of tachycardia a person has then say an event monitor because it has more leads and thus can garner more information. So I wouldn't really fret about another condition. That being said the downside to POTS is there really isn't much they can do to correct the issue besides medication. There is debate on whether it is an autonomic problem or simply that the heart is just too small for the person's body. In any event, I would really recommend you checking out the dysautonomia section. There is a link a little up the page in the related forums box. You may really want to find a doctor who treats this type of condition. I really think it might be worth at least consulting one to get their opinion on your daughter's condition. I know there are a couple in the Chicago area. Dr Janice Gilden of North Chicago being one of them. Best of luck getting your daughter to a place where she can function. She does indeed deserve that.
Michelle
Postural Tachycardia is a condtion in which the body is unable to regulate a person's bp upon changes in postion. The bp drops, the heart over compensates by pumping faster and the patient starts to loose consciousness because the heart is not pumping effeciently and thus the person is not getting the proper amount of oxygen. It is this drop in bp that is likely the cause of your daughter feeling like the world seems muffled to her and to you she seems out of it. With this condtion the person's body has trouble pumping blood effeciently while a person is standing which could cause them to pass out while standing. This sounds like what your daughter has. It is possible while she is laying she changes head position and thus changes her hearts ability to pump blood efficiently which again causes her bp to drop causing her heart to start beating faster to compensate. It is the same principle as the tilt table test. I would think if she had a different type of arrythmia, since she was having episodes while on the holter monitor, it would have shown up for the doctor. The holter monitor is actually a better way of defining the type of tachycardia a person has then say an event monitor because it has more leads and thus can garner more information. So I wouldn't really fret about another condition. That being said the downside to POTS is there really isn't much they can do to correct the issue besides medication. There is debate on whether it is an autonomic problem or simply that the heart is just too small for the person's body. In any event, I would really recommend you checking out the dysautonomia section. There is a link a little up the page in the related forums box. You may really want to find a doctor who treats this type of condition. I really think it might be worth at least consulting one to get their opinion on your daughter's condition. I know there are a couple in the Chicago area. Dr Janice Gilden of North Chicago being one of them. Best of luck getting your daughter to a place where she can function. She does indeed deserve that.
Michelle
Hello to you both...
Michelle, Yeah that is one of the diagnoses she got but my confusion with this is her bp is never low and this happens to her laying in bed. I thought you had to be standing for this to happen and I also thought your bp dropped with this, hers doesn't.
ireneo, Yes she has a rheumatologist and they periodically check her for autoimmune diseases. They've diagnoses her with mixed connective tissue disease for the moment.
She also has an endocrinologist we've seen once because they thought she had hypoclycemia turned out that wasn't it either.
Just not sure what is going on but she has No quality of life and as her mom it's heartbreaking to watch her waste away. She is such an intelligent young lady who has so much to offer the world but if she never gets out of her room that will be hard to do.
Thank you both for taking the time to read and respond....
Klarity
Michelle, Yeah that is one of the diagnoses she got but my confusion with this is her bp is never low and this happens to her laying in bed. I thought you had to be standing for this to happen and I also thought your bp dropped with this, hers doesn't.
ireneo, Yes she has a rheumatologist and they periodically check her for autoimmune diseases. They've diagnoses her with mixed connective tissue disease for the moment.
She also has an endocrinologist we've seen once because they thought she had hypoclycemia turned out that wasn't it either.
Just not sure what is going on but she has No quality of life and as her mom it's heartbreaking to watch her waste away. She is such an intelligent young lady who has so much to offer the world but if she never gets out of her room that will be hard to do.
Thank you both for taking the time to read and respond....
Klarity
Hi! Thank you for taking the time to read my LONG post and replying.
To answer your questions she's been diagnosed with Super Ventricular and Postural Ventricular Tachycardia both so it seems to be a bit confusing where this is concerned.
She sees "renowned kidney specialist" in Chicago who monitor her kidney's and was diagnosed with nephrocalcinosis some 7yrs ago. Though I've been told this is NOT a diagnoses but rather a symptom so here again we really have no answers that are clear. Yes you are correct she has passed some 50 stones in the past 9 yrs with only one having to be surgically removed.
I'm so confused by the "pots diagnosis" because Low BP isn't something I've ever witnessed except the ONE time so that makes NO sense.
Her BP was running like 120-140 over 90's so it was rather high and yeah we tracked it for over a month. The heart halter she wore for a month and that's what picked up all the high heart rate readings.
I'm at a loss but the poor kid is exhausted and her life has come to a screeching halt in the last 9yrs. These episodes though have by far been the most terrifying. If they EVER get to the bottom of the cause I'll be sure and let everyone know.
Thanks again for the reply and if you think of anything else please let me know.
klarity
To answer your questions she's been diagnosed with Super Ventricular and Postural Ventricular Tachycardia both so it seems to be a bit confusing where this is concerned.
She sees "renowned kidney specialist" in Chicago who monitor her kidney's and was diagnosed with nephrocalcinosis some 7yrs ago. Though I've been told this is NOT a diagnoses but rather a symptom so here again we really have no answers that are clear. Yes you are correct she has passed some 50 stones in the past 9 yrs with only one having to be surgically removed.
I'm so confused by the "pots diagnosis" because Low BP isn't something I've ever witnessed except the ONE time so that makes NO sense.
Her BP was running like 120-140 over 90's so it was rather high and yeah we tracked it for over a month. The heart halter she wore for a month and that's what picked up all the high heart rate readings.
I'm at a loss but the poor kid is exhausted and her life has come to a screeching halt in the last 9yrs. These episodes though have by far been the most terrifying. If they EVER get to the bottom of the cause I'll be sure and let everyone know.
Thanks again for the reply and if you think of anything else please let me know.
klarity
The only other question I might add is has she been seen by a rheumatologist to check for any of the auto immune diseases? They affect the whole body as you know.
Hi Klarity
There is an expert section that may be able to give you some more definitive medical advice than what I can offer. I am not a doctor but based on some research I did for my own condtion it sounds like your daughter may have POTS, Postural Orthostatic Tachycardia Syndrome as opposed to Ventricular Tachycardia. I would check on the Dysautonomia (Autonomic Dysfunction) condition and see if it fits but it may be that your daughters vitamin and minerals levels are so out of whack that is causing her to have the problems you mention. Good luck. I do hope you can get your daughter to a better place with her health.
Michelle
There is an expert section that may be able to give you some more definitive medical advice than what I can offer. I am not a doctor but based on some research I did for my own condtion it sounds like your daughter may have POTS, Postural Orthostatic Tachycardia Syndrome as opposed to Ventricular Tachycardia. I would check on the Dysautonomia (Autonomic Dysfunction) condition and see if it fits but it may be that your daughters vitamin and minerals levels are so out of whack that is causing her to have the problems you mention. Good luck. I do hope you can get your daughter to a better place with her health.
Michelle
Hello.
First, I'm sorry if I misunderstand your post, but is she actually diagnosed with ventricular tachycardia? I can't seem to find any evidence for that in your post. I'm not a healthcare professional but I would think her symptoms could be caused by lots of conditions, both cardiac and non-cardiac.
That said, you're describing a lot of abnormal conditions. It's uncommon (and should be carefully investigated) to have a chronic high blood pressure at the age of 20. How high is the blood pressure? Is it verified by 24 hour monitoring or just high at the doctor's office? Could the kidney calcification be to blame?
If her blood pressure is constantly elevated, a cause must be found and treated. Maybe that will solve some of the other problems too?
Postural tachycardia is usually linked to low blood pressure; the heart races in response to a falling blood pressure as blood runs down in the legs and abdomen when you stand up. It may also be a sign of some autonomic dysregulation / dysfunction which may manifest with variable blood pressure, but rarely chronic high.
With kidney calcification, kidney stones, etc, I'm getting suspicious that her calcium levels are elevated. Is this tested (blood test)? How high is it? Is the condition hyperparathyreoidea (elevated calcium metabolism) ruled out? Another reason I started to suspect this is her bone pain, as this condition draws calcium from the bones and makes them weaken. High calcium levels may definitely cause arrhythmias, usually supraventricular but also ventricular in severe cases. It may (will) also cause an elevated blood pressure.
First, I'm sorry if I misunderstand your post, but is she actually diagnosed with ventricular tachycardia? I can't seem to find any evidence for that in your post. I'm not a healthcare professional but I would think her symptoms could be caused by lots of conditions, both cardiac and non-cardiac.
That said, you're describing a lot of abnormal conditions. It's uncommon (and should be carefully investigated) to have a chronic high blood pressure at the age of 20. How high is the blood pressure? Is it verified by 24 hour monitoring or just high at the doctor's office? Could the kidney calcification be to blame?
If her blood pressure is constantly elevated, a cause must be found and treated. Maybe that will solve some of the other problems too?
Postural tachycardia is usually linked to low blood pressure; the heart races in response to a falling blood pressure as blood runs down in the legs and abdomen when you stand up. It may also be a sign of some autonomic dysregulation / dysfunction which may manifest with variable blood pressure, but rarely chronic high.
With kidney calcification, kidney stones, etc, I'm getting suspicious that her calcium levels are elevated. Is this tested (blood test)? How high is it? Is the condition hyperparathyreoidea (elevated calcium metabolism) ruled out? Another reason I started to suspect this is her bone pain, as this condition draws calcium from the bones and makes them weaken. High calcium levels may definitely cause arrhythmias, usually supraventricular but also ventricular in severe cases. It may (will) also cause an elevated blood pressure.
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