Aa
Near panic state
My husband has been declining for many months. Last fall he was diagnosed with depression which I believe was really the beginning of his current health issues. This has evolved into severe fatigue. His many blood tests have all been within normal limits or only slightly elevated. No neurologic component has been found. He has now had an echocardiogram, angiogram, electrical physiology study, and tilt-table test. He wore a 24 hour monitor and now has a 30 day monitor. The cardiologist has gone from over-medication with blood pressure medications to "wrong medication" to bradycardia with missed beats. I have watched his ecg and seen his heart rate drop frequently as low as 32 bpm. He is now being treated with midodrine. The problem is that the severe fatigue has not abated in the least.
We have tried for 3 days to get a call back from the cardiologist so that we can get a referral elsewhere. Our GP will call him today and hopefully we will get some action. Does anyone have any ideas as to what is going on? Questions that we should be asking? Any help would be greatly appreciated.
We have tried for 3 days to get a call back from the cardiologist so that we can get a referral elsewhere. Our GP will call him today and hopefully we will get some action. Does anyone have any ideas as to what is going on? Questions that we should be asking? Any help would be greatly appreciated.
Otter,
First off, let me say that YES, it is quite serendipitous that you landed in the right place! Yours sounds like a VERY familiar story and I imagine you'll find many here in our forum who can relate to some or most aspects of your story—particularly bouncing around between the docs and the hospital and the battery of tests your husband is having, plus the frustration of not finding the "right fit" in terms of diagnosis.
Second, you did an EXCELLENT job of answering the barrage of questions, so thank you very much for getting all that information together for us. It's really helpful, and I know it takes time to piece together the chronology of how all this has occurred and to remember all that, because (as I remember it myself) after a while it all starts to become a blur ... especially when you're under so much stress.
I'm going to try to describe this in a nutshell and give you links to further reading material if you want to study up on it more in depth. From what I'm hearing in your description, there's a flip-flopping between two general classes of explanations for your husband's symptoms (though the specific details within these classes may be ever-changing, we can pretty much fit all of this under one or the other). In short, the doctors need to figure out if the crux of the problem is your husband's cardiovascular system (namely, a heart rhythm problem) or your husband's autonomic nervous system. Both can lead to syncope (fainting), fatigue, fluctuations in heart rate, etc., but the treatment will need to be different depending on which is the underlying cause.
This article does a good job of concisely describing this distinction (you will need to copy and paste the URL into your browser):
http://knol.google.com/k/syncope-fainting#
Here's the link to our page of further reading (including the article I point out above). Please note that this includes articles on all different types of dysautonomia, so some of them will not apply to your husband's situation (dysautonomia is an umbrella term for an entire family of conditions):
http://www.medhelp.org/health_pages/Neurological-Disorders/Further-Reading-on-Dysautonomia/show/696?cid=196
Finally, I would assertively (but tactfully) ask about Mayo again. You may want to bring up the fact that there are tests at the autonomic facility at Mayo that just aren't available to you locally. In light of the positive tilt table test, it may be advisable to seek comprehensive autonomic testing such as QSART (quantitative sudomotor axon reflex testing), TST (thermoregulatory sweat test), Valsalva, Heart Rate Variability, Cold Pressor, and TTT (possibly with serum NE and/or transcranial doppler). The dedicated autonomic clinics such as the one at Mayo have the expertise to know which of these tests are needed for each patient, the equipment to perform the tests, and the expertise to interpret them correctly. There are also a number of laboratory tests that are of interest in particular in investigating certain autonomic cases (serum electrolytes, urine and serum catecholamines, skin biopsy to look at peripheral nerves, and others).
You might, in fact, be surprised to find that the wait for an appointment won't be as long as your docs are fearing. There's only one way to find out. And from my perspective, if it is going to take that long to get an appointment, they're only delaying things for you by putting off making the referral now. You might as well call and get the process started now; if you get things sorted out locally in the meantime, you could always cancel. I *would* stress to them that you want them to make the referral to the autonomic department, and give them the contact number for that department that we gave you here. It would be a waste to make a trip there and be scheduled with other specialties there and never get in to the autonomic department because of a misunderstanding (these things can and do happen). Ideally I'd think you'd be getting seen by the autonomic docs and cardiology there, and then whoever else Mayo thinks is relevant on top of that.
Please let me/us know if you have any other questions we can answer.
Best,
-Heiferly
First off, let me say that YES, it is quite serendipitous that you landed in the right place! Yours sounds like a VERY familiar story and I imagine you'll find many here in our forum who can relate to some or most aspects of your story—particularly bouncing around between the docs and the hospital and the battery of tests your husband is having, plus the frustration of not finding the "right fit" in terms of diagnosis.
Second, you did an EXCELLENT job of answering the barrage of questions, so thank you very much for getting all that information together for us. It's really helpful, and I know it takes time to piece together the chronology of how all this has occurred and to remember all that, because (as I remember it myself) after a while it all starts to become a blur ... especially when you're under so much stress.
I'm going to try to describe this in a nutshell and give you links to further reading material if you want to study up on it more in depth. From what I'm hearing in your description, there's a flip-flopping between two general classes of explanations for your husband's symptoms (though the specific details within these classes may be ever-changing, we can pretty much fit all of this under one or the other). In short, the doctors need to figure out if the crux of the problem is your husband's cardiovascular system (namely, a heart rhythm problem) or your husband's autonomic nervous system. Both can lead to syncope (fainting), fatigue, fluctuations in heart rate, etc., but the treatment will need to be different depending on which is the underlying cause.
This article does a good job of concisely describing this distinction (you will need to copy and paste the URL into your browser):
http://knol.google.com/k/syncope-fainting#
Here's the link to our page of further reading (including the article I point out above). Please note that this includes articles on all different types of dysautonomia, so some of them will not apply to your husband's situation (dysautonomia is an umbrella term for an entire family of conditions):
http://www.medhelp.org/health_pages/Neurological-Disorders/Further-Reading-on-Dysautonomia/show/696?cid=196
Finally, I would assertively (but tactfully) ask about Mayo again. You may want to bring up the fact that there are tests at the autonomic facility at Mayo that just aren't available to you locally. In light of the positive tilt table test, it may be advisable to seek comprehensive autonomic testing such as QSART (quantitative sudomotor axon reflex testing), TST (thermoregulatory sweat test), Valsalva, Heart Rate Variability, Cold Pressor, and TTT (possibly with serum NE and/or transcranial doppler). The dedicated autonomic clinics such as the one at Mayo have the expertise to know which of these tests are needed for each patient, the equipment to perform the tests, and the expertise to interpret them correctly. There are also a number of laboratory tests that are of interest in particular in investigating certain autonomic cases (serum electrolytes, urine and serum catecholamines, skin biopsy to look at peripheral nerves, and others).
You might, in fact, be surprised to find that the wait for an appointment won't be as long as your docs are fearing. There's only one way to find out. And from my perspective, if it is going to take that long to get an appointment, they're only delaying things for you by putting off making the referral now. You might as well call and get the process started now; if you get things sorted out locally in the meantime, you could always cancel. I *would* stress to them that you want them to make the referral to the autonomic department, and give them the contact number for that department that we gave you here. It would be a waste to make a trip there and be scheduled with other specialties there and never get in to the autonomic department because of a misunderstanding (these things can and do happen). Ideally I'd think you'd be getting seen by the autonomic docs and cardiology there, and then whoever else Mayo thinks is relevant on top of that.
Please let me/us know if you have any other questions we can answer.
Best,
-Heiferly
Thank you for your responses. I actually posted here by "mistake" but sometimes those work out the best. You have a lot of good questions and I'll do my best to answer.
Here is the epic version of the last year.
Fall of 2009-diagnosed with depression (which was reasonable due to work stressors at the time) and treated with Prozac. I now wonder if it wasn't the beginning of the fatique setting in.
Heading into the winter his BP started rising despite his medication and he was given Metropolol (the longer acting) and hydrochlorothiazide. I'm not sure if they took him off the prior medication or not. They kept trying things and finally felt that the BP was controlled. Around January the fatique increased and he lost even more interest in daily activities. I sent him back to the doc who said his BP was too low and decreased his meds. This was repeated a few weeks later due to continued symptoms. The BP stabilized but the fatigue didn't improve. The doctor visits continued with the usual round of labs with no results except treatment for a UTI. Finally things heated up in July. I pressured the doc and he referred us to a neurologist and scheduled and echocardiogram. Before we got to those appointment my husband almost passed out at the top of the altar stairs while leading worship. Luckily the council pres. and I got to him in time. The EMT in the congregation checked him out and called the ambulance and off we went to the ER. The PA who saw him there (no MD) ordered labs and a head and chest CT, said the results were all normal and no abnormalities on the scans and that he was probably overmedicated. She took him off the hydrochlorothiazide and said that and the fluids they gave him should alleviate the problem and sent us home to await the echo and neuro exam. When we saw the neurologist he detected the A fib and irregular heart beat and checked for orthostatic hypotension which resulted in a significant drop in BP. Off to the ER again.....this time to see cardiologist 1. After fluids and more labs he decided that the problem was still overmedication and removed the metropolol and sent us home.Then he underwent the echo and when we saw cardiologist 2 he was pretty excited about what he said was ventricular tachycardia (also some A fib) and sent us directly to the heart center for an angiogram. Results: 30 percent blockage of one artery and everything else looked OK from a plumbing aspect. This is where the Holter monitor came in and the referral to cardiologist 1 (the electrician). Off course we had to wait four days and were told with v tach he should do nothing at all. It was a long four days. So we see Cardio2 he schedules an EPS and says there is no v tach and diagnosed problems with the AV node (I think it was NRT??) and prescribed short acting metropolol. When there were no improvements in the fatigue I took him back and the cardiolgist said that he do the tilt table test. When they did the second half of the test with the nitroglycerin he lost consciousness. This led the doc to stop the metropolol which he said had probably made things worse and start the midodrine and order the 30 day monitor. He said that if the midodrine wasn't tolerated that a pacemaker might be called for. So far the recordings by the 30 day monitor have been within whatever parameters the doc set and the medication hasn't caused and problems except a somewhat elevated BP. We still had no relief in the fatique and returned to the GP who took a wider range of blood tests (lead, testosterone, more thyroid......etc). When these all came back normal he referred us to an internal med. doc in Waterloo. We asked for Mayo but were told that without and emergent situation it might take months to get in there (only 3.5 hours from us and my old home town). We are waiting for the next appt. scheduled for Tuesday and hope that he will have an idea as everyone else is stumped on what to do next.
I'm not sure if that answers all of the questions but it is the best I can do. At this point I'm overloaded taking care of hubby, what I can do at the church, and all of the household duties. I'd be glad to have further input and appreciate you interest. Thank You!
Otter
Here is the epic version of the last year.
Fall of 2009-diagnosed with depression (which was reasonable due to work stressors at the time) and treated with Prozac. I now wonder if it wasn't the beginning of the fatique setting in.
Heading into the winter his BP started rising despite his medication and he was given Metropolol (the longer acting) and hydrochlorothiazide. I'm not sure if they took him off the prior medication or not. They kept trying things and finally felt that the BP was controlled. Around January the fatique increased and he lost even more interest in daily activities. I sent him back to the doc who said his BP was too low and decreased his meds. This was repeated a few weeks later due to continued symptoms. The BP stabilized but the fatigue didn't improve. The doctor visits continued with the usual round of labs with no results except treatment for a UTI. Finally things heated up in July. I pressured the doc and he referred us to a neurologist and scheduled and echocardiogram. Before we got to those appointment my husband almost passed out at the top of the altar stairs while leading worship. Luckily the council pres. and I got to him in time. The EMT in the congregation checked him out and called the ambulance and off we went to the ER. The PA who saw him there (no MD) ordered labs and a head and chest CT, said the results were all normal and no abnormalities on the scans and that he was probably overmedicated. She took him off the hydrochlorothiazide and said that and the fluids they gave him should alleviate the problem and sent us home to await the echo and neuro exam. When we saw the neurologist he detected the A fib and irregular heart beat and checked for orthostatic hypotension which resulted in a significant drop in BP. Off to the ER again.....this time to see cardiologist 1. After fluids and more labs he decided that the problem was still overmedication and removed the metropolol and sent us home.Then he underwent the echo and when we saw cardiologist 2 he was pretty excited about what he said was ventricular tachycardia (also some A fib) and sent us directly to the heart center for an angiogram. Results: 30 percent blockage of one artery and everything else looked OK from a plumbing aspect. This is where the Holter monitor came in and the referral to cardiologist 1 (the electrician). Off course we had to wait four days and were told with v tach he should do nothing at all. It was a long four days. So we see Cardio2 he schedules an EPS and says there is no v tach and diagnosed problems with the AV node (I think it was NRT??) and prescribed short acting metropolol. When there were no improvements in the fatigue I took him back and the cardiolgist said that he do the tilt table test. When they did the second half of the test with the nitroglycerin he lost consciousness. This led the doc to stop the metropolol which he said had probably made things worse and start the midodrine and order the 30 day monitor. He said that if the midodrine wasn't tolerated that a pacemaker might be called for. So far the recordings by the 30 day monitor have been within whatever parameters the doc set and the medication hasn't caused and problems except a somewhat elevated BP. We still had no relief in the fatique and returned to the GP who took a wider range of blood tests (lead, testosterone, more thyroid......etc). When these all came back normal he referred us to an internal med. doc in Waterloo. We asked for Mayo but were told that without and emergent situation it might take months to get in there (only 3.5 hours from us and my old home town). We are waiting for the next appt. scheduled for Tuesday and hope that he will have an idea as everyone else is stumped on what to do next.
I'm not sure if that answers all of the questions but it is the best I can do. At this point I'm overloaded taking care of hubby, what I can do at the church, and all of the household duties. I'd be glad to have further input and appreciate you interest. Thank You!
Otter
Hi, welcome to the Dysauto forum.
I have a few questions for clarification. First, was your husband on HIGH blood pressure medication before (when they were mentioning the diagnosis of overmedication with blood pressure medication, for example), but now he has been put on midodrine?
Second, was the "bradycardia with missed beats" diagnosed based off of the 24 hour monitor? When you say 24 hour monitor, are you referring to a Holter monitor? (I ask because I'm making sure you're not referring to 24 hour ambulatory blood pressure monitoring.)
Do you recall what the result of the EP study was? Also, what were the results of the tilt table test? Presumably it was positive for something, and thus the midodrine, or am I missing something? Did they explain any of this in detail to you? (If not, I am definitely LOUDLY seconding Tonya's opinion that you consider seeking a second opinion.)
Depending on what the results of the EP study and the tilt were, a pacemaker could either be a possible solution to the bradycardia or a crummy idea (it can be ineffective with some types of conditions which can show up on tilt table test).
Have they discussed his blood pressure in relation to these tests at all, in addition to heart rate? (It would be relevant as well whether any blood pressure medications were being taken or were ceased during the tests, as this would affect interpretation of course.)
Oh, and I almost forgot to ask ... "missed beats" ... did they say whether these were PVCs, PACs??? Most skipped beats (aka. ectopic beats) are benign; do you recall if the docs have said if these are benign or not?
My final thought is that if the tilt table test was positive for some form of dysautonomia, the nearest autonomic clinic to you is (by my rough estimate dragging a dot around your state on google maps) about 6 hours away at the farthest, which is VERY lucky for you, because there are very few of these in the country. Because the one at Mayo (Rochester, MN) is in a state neighboring yours, there's a decent chance that your insurance would cover there. Medicaid usually covers states that share borders; according to Mayo's website they do take IA Medicaid. Medicare would be good there as well. For more info on insurance coverage there:
http://www.mayoclinic.org/billing-rst/#assistance
For the contact info for the autonomic clinic, see our health page on dysautonomia clinics/specialists (the hospital clinics are the ones that have the comprehensive diagnostic facilities):
http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Specialists/show/717?cid=196
Of course, if the tilt was NOT positive for some form of dysautonomia, than sorry to have wasted your time with that info. (Either way, you may want to get the original records from the tilt—not just the interpretation summary, but the FULL tracings and everything—if you go to another specialist; tilt table tests are a bit notorious for being misinterpreted by well-meaning cardiologists who don't have much experience diagnosing the various forms of dysautonomia.)
Sorry to ask so many questions; the more information you can give, the more I can target my responses to be useful to your situation.
Best,
-Heiferly.
I have a few questions for clarification. First, was your husband on HIGH blood pressure medication before (when they were mentioning the diagnosis of overmedication with blood pressure medication, for example), but now he has been put on midodrine?
Second, was the "bradycardia with missed beats" diagnosed based off of the 24 hour monitor? When you say 24 hour monitor, are you referring to a Holter monitor? (I ask because I'm making sure you're not referring to 24 hour ambulatory blood pressure monitoring.)
Do you recall what the result of the EP study was? Also, what were the results of the tilt table test? Presumably it was positive for something, and thus the midodrine, or am I missing something? Did they explain any of this in detail to you? (If not, I am definitely LOUDLY seconding Tonya's opinion that you consider seeking a second opinion.)
Depending on what the results of the EP study and the tilt were, a pacemaker could either be a possible solution to the bradycardia or a crummy idea (it can be ineffective with some types of conditions which can show up on tilt table test).
Have they discussed his blood pressure in relation to these tests at all, in addition to heart rate? (It would be relevant as well whether any blood pressure medications were being taken or were ceased during the tests, as this would affect interpretation of course.)
Oh, and I almost forgot to ask ... "missed beats" ... did they say whether these were PVCs, PACs??? Most skipped beats (aka. ectopic beats) are benign; do you recall if the docs have said if these are benign or not?
My final thought is that if the tilt table test was positive for some form of dysautonomia, the nearest autonomic clinic to you is (by my rough estimate dragging a dot around your state on google maps) about 6 hours away at the farthest, which is VERY lucky for you, because there are very few of these in the country. Because the one at Mayo (Rochester, MN) is in a state neighboring yours, there's a decent chance that your insurance would cover there. Medicaid usually covers states that share borders; according to Mayo's website they do take IA Medicaid. Medicare would be good there as well. For more info on insurance coverage there:
http://www.mayoclinic.org/billing-rst/#assistance
For the contact info for the autonomic clinic, see our health page on dysautonomia clinics/specialists (the hospital clinics are the ones that have the comprehensive diagnostic facilities):
http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Specialists/show/717?cid=196
Of course, if the tilt was NOT positive for some form of dysautonomia, than sorry to have wasted your time with that info. (Either way, you may want to get the original records from the tilt—not just the interpretation summary, but the FULL tracings and everything—if you go to another specialist; tilt table tests are a bit notorious for being misinterpreted by well-meaning cardiologists who don't have much experience diagnosing the various forms of dysautonomia.)
Sorry to ask so many questions; the more information you can give, the more I can target my responses to be useful to your situation.
Best,
-Heiferly.
Hello, and Welcome to the AD Forum :)
First off I would say that I am sorry that your hubby is dealing w/ these issues. It can and is very scary to know that your "Life Force" (heart) is having issues.
Secondly, I would certainly find a different Cardiologist. If they are not caring and sympathetic enough to call you bck then I would not think that they are looking out for your best interest!
Lastly, if he is feeling more and more significant problems or feel that he is feeling worse, then I would say that he should go the the Emergency Room w/ out Delay!
I have you in thought and prayer :)
Please keep us up to date on how things are going. Again, Welcome to the AD Forum!
Take Care,
~Tonya
Have an Answer?
You are reading content posted in the Autonomic Dysfunction Community
Are there grounds to recommend coffee consumption? Recent studies perk interest.
Salt in food can hurt your heart.
Get answers to your top questions about this common — but scary — symptom
How to know when chest pain may be a sign of something else
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
