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Can dysautonomia explain night time bradycardia?
I have night time bradycardia where my heart slows way down when I am in REM sleep. Night time monitoring of my heart rate shows that it drops well below 30 BPM and then pauses for 3-6 seconds per beat several times. I often wake up after these events with my heart rate elevated and feeling oxygen deprived. I have in the past 3 years had 5 blood clots, one of them a DVT. I believe that my slow heart rate at night is contributing to these blood clots. Lately, I've also been experiencing unbearable thirst. I have had a host of issues over the past 3 years besides these. They include long term headaches without let up for 2 months, constipation (which I had never experienced until then), abdominal pain, strange tremors that I associate with a feeling of oxygen deprivation, light headedness, and more. I've been to well over 20 doctors, and been through the "your suffering from anxiety and depression" thing so much it makes me ill to think about (how doctors can think patients are so stupid that they can not identify the cause of their own anxiety depression is just mind boggling). I freely admit that I have suffered from anxiety and depression, but as I tell them, the anxiety and depression are caused by these symptoms and the inability or lack of determination in all the people I have asked to help to actually provide any help. I stumbled on dysautonomia as a possible explanation as I researched the vagus nerve and how it might be related simply because of its connection to heart rate.
Any thoughts on whether I should continue to explore dysautonomia and where to start?
Most of what I've read on this forum has been about POTS and GI issues, but I don't really think my symptoms fit what I understand POTS to be, and my GI issues are not severe at all (my periods of constipation, were few, and clustered in a small period of time - I've not had any episodes since).. My periods of light headedness are few as well, and I believe they are associated with the anxiety I experience rather than of orthostatic origin - that is, they do not feel anything like the kind of lightheadedness that I have occasionally experienced when standing up quickly (orthostatic lightheadedness is a rare occurrence for me, but the times that I have had it, it has always been in a cluster of events - that is, its occurs for a few days then goes away for months, maybe years).
I'm hoping to find another explanation for the bradycardia, otherwise I think I'm headed for a pacemaker. Doctors are so resistant to actually digging in to figure things out and that drives me crazy. I really don't want to end up with a pacemaker because I've been unable to get a doctor to do his job properly. To them, it just easy to put in a pacemaker, so they seem to think there is no point in identifying real source of the problem. At the very least you would think they would want to know if the source is malfunction A/V sinus node or an overactive vagus nerve even if they can not do anything for either. One thing I have noticed for sure is that lack of sleep and some times intense exercise exacerbates my night time bradycardia. My take is that sleep deprivation tends to causes longer periods of REM sleep when I do sleep. I do experience bradycardia (heart rate into the 40s) when I am sleepy but awake, and my heart rate responds well when exercising. I've never had a problem with it during the day when I am well rested.
Any thoughts on whether I should continue to explore dysautonomia and where to start?
Most of what I've read on this forum has been about POTS and GI issues, but I don't really think my symptoms fit what I understand POTS to be, and my GI issues are not severe at all (my periods of constipation, were few, and clustered in a small period of time - I've not had any episodes since).. My periods of light headedness are few as well, and I believe they are associated with the anxiety I experience rather than of orthostatic origin - that is, they do not feel anything like the kind of lightheadedness that I have occasionally experienced when standing up quickly (orthostatic lightheadedness is a rare occurrence for me, but the times that I have had it, it has always been in a cluster of events - that is, its occurs for a few days then goes away for months, maybe years).
I'm hoping to find another explanation for the bradycardia, otherwise I think I'm headed for a pacemaker. Doctors are so resistant to actually digging in to figure things out and that drives me crazy. I really don't want to end up with a pacemaker because I've been unable to get a doctor to do his job properly. To them, it just easy to put in a pacemaker, so they seem to think there is no point in identifying real source of the problem. At the very least you would think they would want to know if the source is malfunction A/V sinus node or an overactive vagus nerve even if they can not do anything for either. One thing I have noticed for sure is that lack of sleep and some times intense exercise exacerbates my night time bradycardia. My take is that sleep deprivation tends to causes longer periods of REM sleep when I do sleep. I do experience bradycardia (heart rate into the 40s) when I am sleepy but awake, and my heart rate responds well when exercising. I've never had a problem with it during the day when I am well rested.
Mick, I too reside in stl and am having similar symptoms of bradycardia. Have you found relief? Are you doing ok? Please write me back.
Best wishes.
Best wishes.
I sent an e-mail to Dr. Fancourt, but did not get a response. The e-mail may be an old one though since it was an AOL address. If you have a way to find another address for me, I would appreciate it.
mick
mick
Thanks for the info Jay. I did manage to find an e-mail address for Dr. Fancourt. I intend to write him to find out what expertise he may able to offer in my case.
Cheers,
mick
p.s. - If you would care to take this conversation off line via direct e-mail, I think we can find a way to do that.
Cheers,
mick
p.s. - If you would care to take this conversation off line via direct e-mail, I think we can find a way to do that.
Good morning Mick,
Thank you for the long reply. Sorry for my delay in replying.
To answer your questions, Yes I think Dr Fancourt would correspond via email, although he is about to retire he will have a predecessor no doubt. I don't know his email address but I image a good google search should find it. he is a nice man so I would like to think he would offer his advice. He is the most knowledgeable man in this field that I have met by a marathon of miles!
Some of the AD tests they did I am afraid I don't know the medical names for but I can explain them:
1. they placed electrical sensors on the body - upper chest, stomach and back and get you to blow against mercury - this is a hard test although sounds easy, you have to blow very hard - he pinched my nose closed during and the mercury doesnt move, I lost my vision within seconds and was close to passing out (you are laying down for the test) he counted a certain length of time, i only just made it that long, when he let go and moved the mouth piece away i burst into tears, i found it painful and difficult.
2. same sort of test but you grip a metal bar with your hands and have to squeeze at a certain pressure for a certain amount of time. sounds easy but is harder than you think
3. Ice water... again while laying down with this pads/electrodes on. your hand is plunged into a bucket of ice and water, and is kept there for a certain length of time, you talk them through what you feel.
4. Hyperventilating test - best way i can describe it.
you are sat up and given instructions of types of ways to breathe for a certain length of time, you do this and report symptoms, they then give you another way, and repeat.
5. tilt table - you already know what this is
6. laying down and stood up blood pressure tests
7. eye test - shining lights in the eyes and timing the pupil changes that occur
8. he also made me stand up, touch my toes, eyes shut and raising the knees etc
all the above were measuring sympathetic and para sympathetic nervous systems I think and the relation between the two.
Heart tests I have had include:
electrocardiagram
echocardiagram
stress test
calcium score ct scan ( which they could of done for you instead of the cath surely - as it was to see if there was any build up in my veins /arteries)
cardiac memos
and now an implantable cardiac monitor
I really feel for you having the blood clots I too have had a PE, Many years ago I had a operation to repair my stomach valve they accidentally punctured my lung and collapsed it... i ended up with a chest drain through my side, once that was finally removed I had a clot from that occur... they were honest and said that was likely the reason why. Since then I had another start in my leg but that was caused by a long airplane trip. I think its likely the cath did cause the initial clots but i cant see how they can be an on going reason. I hope you get to the bottom of that though.
have I had my heart monitored at night - well not specifically although my implanted monitor monitors all the time it doesnt know when i am asleep or awake. but an interesting note though, when I have been admitted to hospitals and kept on monitors on several occasions ive woke up to a team of doctors/nurses bursting into my curtain around my bed startling me - my monitor alarming - the staff thinking i was in cardiac need of assistance. when they see me looking 'ok' they look stunned check my wires are connected which they always are and then leave me to it.
they do know my heart goes bradycardic alot but i think on these occasions it must of been temporarily worringly lower than normal... but they have never officially said.
It seems your newest doctor is the better one. I like my cardiologist as he is very straight talking, doesnt sugar coat, but gives very honest opinions. If you have no luck with Dr Fancourt at Glenfield Hospital you could try messaging my cardiologist Dr Houghton at Grantham Hospital, however like i say he hasnt met too many people like us himself.
I will of course let you know if i find any good discussions but this is the best I've ever come across - I dont think there are many out there, I would love to keep in touch and know how you get on.
All the best,
Jay
Thank you for the long reply. Sorry for my delay in replying.
To answer your questions, Yes I think Dr Fancourt would correspond via email, although he is about to retire he will have a predecessor no doubt. I don't know his email address but I image a good google search should find it. he is a nice man so I would like to think he would offer his advice. He is the most knowledgeable man in this field that I have met by a marathon of miles!
Some of the AD tests they did I am afraid I don't know the medical names for but I can explain them:
1. they placed electrical sensors on the body - upper chest, stomach and back and get you to blow against mercury - this is a hard test although sounds easy, you have to blow very hard - he pinched my nose closed during and the mercury doesnt move, I lost my vision within seconds and was close to passing out (you are laying down for the test) he counted a certain length of time, i only just made it that long, when he let go and moved the mouth piece away i burst into tears, i found it painful and difficult.
2. same sort of test but you grip a metal bar with your hands and have to squeeze at a certain pressure for a certain amount of time. sounds easy but is harder than you think
3. Ice water... again while laying down with this pads/electrodes on. your hand is plunged into a bucket of ice and water, and is kept there for a certain length of time, you talk them through what you feel.
4. Hyperventilating test - best way i can describe it.
you are sat up and given instructions of types of ways to breathe for a certain length of time, you do this and report symptoms, they then give you another way, and repeat.
5. tilt table - you already know what this is
6. laying down and stood up blood pressure tests
7. eye test - shining lights in the eyes and timing the pupil changes that occur
8. he also made me stand up, touch my toes, eyes shut and raising the knees etc
all the above were measuring sympathetic and para sympathetic nervous systems I think and the relation between the two.
Heart tests I have had include:
electrocardiagram
echocardiagram
stress test
calcium score ct scan ( which they could of done for you instead of the cath surely - as it was to see if there was any build up in my veins /arteries)
cardiac memos
and now an implantable cardiac monitor
I really feel for you having the blood clots I too have had a PE, Many years ago I had a operation to repair my stomach valve they accidentally punctured my lung and collapsed it... i ended up with a chest drain through my side, once that was finally removed I had a clot from that occur... they were honest and said that was likely the reason why. Since then I had another start in my leg but that was caused by a long airplane trip. I think its likely the cath did cause the initial clots but i cant see how they can be an on going reason. I hope you get to the bottom of that though.
have I had my heart monitored at night - well not specifically although my implanted monitor monitors all the time it doesnt know when i am asleep or awake. but an interesting note though, when I have been admitted to hospitals and kept on monitors on several occasions ive woke up to a team of doctors/nurses bursting into my curtain around my bed startling me - my monitor alarming - the staff thinking i was in cardiac need of assistance. when they see me looking 'ok' they look stunned check my wires are connected which they always are and then leave me to it.
they do know my heart goes bradycardic alot but i think on these occasions it must of been temporarily worringly lower than normal... but they have never officially said.
It seems your newest doctor is the better one. I like my cardiologist as he is very straight talking, doesnt sugar coat, but gives very honest opinions. If you have no luck with Dr Fancourt at Glenfield Hospital you could try messaging my cardiologist Dr Houghton at Grantham Hospital, however like i say he hasnt met too many people like us himself.
I will of course let you know if i find any good discussions but this is the best I've ever come across - I dont think there are many out there, I would love to keep in touch and know how you get on.
All the best,
Jay
4 Comments
Both of you should be worked up by a hematologist for the clots. I share your symptoms and I have antiphospholipid antibody syndrome and autonomic dysfunction and bradycardia (especially at night)
Both of you should be worked up by a hematologist for the clots. I share your symptoms and I have antiphospholipid antibody syndrome and autonomic dysfunction and bradycardia (especially at night)
Hey giraffe coyote bear, are you still alive? I'm going through similar symptoms. Doctors tell me its all in my head but my symptoms say otherwise. My body can't control my breath or heart rate for me and I often can't breathe in my sleep. I wear an oximeter and I often jolt awake and see that my heart rate is in the 50s and my at my blood oxygen is in the 80s... I feel hopeless... Everyone thinks I'm crazy and that its just anxiety. I also get palpitations (although recently Ive lost awareness of them) upon standing and climbing stairs. I lose out on a lot of sleep and feel tired and depressed and foggy all the time, almost like I'm in a dream... I feel like im gonna die and there's nothing I can do about it...
I often get tachycardia that can hit at anytime no matter what I'm doing... Oh and I'm 22, around 240 lbs and 5'9
Jay,
Thank you for the reply. I understand your feeling of aloneness with this. I so often feel like I'm fighting a one man battle because there is so much misunderstanding. I suspect you feel that way too. Going through gobs of tests and getting no help when you know something is not right is really agonizing mentally. Before the night time bradycardia was discovered no test revealed anything wrong with me so I was stuffed into the "anxious patient" category and all that did was create anxiety for me that did not exist before. Even my wife began to believe I was suffering from just anxiety. It was a relief to get her back on my side after the nocturnal bradycardia was discovered.
As a general rule I am not anxious person at all. My anxiety level at the start of this horrid journey was almost nil because I basically never experienced any significant health problems before and figured this was something doctors could fix easily. As it became clear to me that doctors were not even on the same page as me as to what was going on, anxiety began to set in. I suspect you've had that same experience. It is so frustrating because the anxiety itself made me sicker which of course reinforced doctors beliefs that I was just suffering from anxiety.
There is no question in my mind that the kind of stress this has placed on me has indeed worsened my physical health which just seems like such an awful outcome of seeking help to begin with. There is also no question in my mind that some of what doctors have done have indeed harmed me and made me worse off.
One was the cardiac catheterization that was done early on. I was totally opposed to it since my history and symptoms simply did not point to coronary artery disease. I believed that if I had something wrong with my heart that it was most likely a valve problem or something electrical, and wanted to do those tests firsts. The doctor, however, said we had to do the cath because "I could die" if it was a coronary artery blockage.
As a person who exercised aerobically routinely, who had low cholesterol, low BP, and no family history of artery disease, I thought it did not make sense to perform a dangerous (by comparison to other tests that could have been done) catheterization. But after hearing the "you could die" phrase over and over, I gave in. I turned out to be correct - my coronary arteries were perfectly smooth - not a smidgen of plaque or blockage anywhere. I expected an echocardiogram and some sort arrhythmia testing to follow, but instead the doctor said he did not know what else to test and that was the end of it in his mind.
The day after the cath I developed a blood clot in my arm. That raised my anxiety - how could I think any other than "What did this doctor do to me?". He blew off my concerns about the blood clot saying that it had nothing to do with the procedure. A few weeks later, I developed a more serious deep vein clot in my leg and a pulmonary embolism. Now I definitely was anxious - how could anyone believe that these clots were not related to the catheterization? Well, of course the cardiologist who ordered it did not think they were related. No clots in my prior 52 years of life and then 3 immediately following the cath and they are not related?!! Sorry, I did not believe it then and I still don't believe it now.
In retrospect, I often think I would be better off now if I had not ever sought help from doctors to begin with. My symptoms and medical concerns before the cath were nothing compared to what I experienced after and what I experience now.
After the blood clots my anxiety was through the roof, and I believed I had every justification to be anxious. Doctors on the other hand blew all the post cath complaints off because, after all, my cath results showed absolutely no problems so I must be suffering from anxiety. What did that do? It drove my anxiety higher. Now I not only had all my initial symptoms, plus more, plus blood clots the cause of which no one could explain. To doctors these were not reasons to be concerned. It was the most surreal experience of my life at that point time (worse surreal experiences later however).
(I've seemed to have begun to prattle so I'll stop, but I'm going to leave the prattling paragraphs in case there are others who are having a similar experience so they can recognize that doctors do screw up, and they don't tell you when they do. So if you're having doubts about what your doctor tells you or does, don't ignore your doubts - immediately go to another doctor.)
To get back to your situation, Jay, it certainly does sound more like autonomic dysfunction than mine, and I am sorry to hear about what you go through. From a symptom perspective the thing we seem to have in common most are the chest pains. Your description matches my experience (post catheterization) almost exactly. I too have mitral valve prolapse, but with no regurgitation. That is something I've known for 20 years and one of the reasons I thought it made sense to check my heart valves at the start. I had not ever been concerned about MVP before. I just know that a doctor heard a murmur during a routine office visit and ordered a echocardiogram. It should MVP and he told me it was nothing to worry about, so I never did. That's when I had more trust for doctors though.
Have they monitored your heart at night? Do you have any episodes of bradycardia then?
I have not had any tests for AD so far. I don't even know what kind of tests could be done other than a tilt table test. Can you tell me about some of the other testing they have done on you? My primary care doctor talked to a doctor friend of his who specializes in AD, but that doctor said he did not think there was any worthwhile tests he could perform on me so nothing has happened in that realm.
Going to Leciester, UK, bit is impractical for me, but if you thought this doctor would be willing to consult via phone or e-mail, then I would love to get some contact information for him if you really think highly of him.
I saw a second EP cardiologist yesterday. He was a breath of fresh air for me compared to all the other doctor's I've seen over the past 3 years. He revealed more curiosity about my symptoms than any doctor I've seen so far. He in particular showed interest in my post cath blood clots (I've 3 more blood clots more over the 3 years since the three immediately after the cath) which is somewhat heartening to me. I'm hoping that will lead to some serious digging into the facts so that he will discover the correct and most vital ones. So far though he did not have any great advice for me, and he has no substantial plans at present other than to monitor my heart more and attempt to correlate the occurrence of pauses with symptoms. My other EP Cardiolgist suggested I have an implantable monitor like yours, but I've opted for a regular event monitor for the time being.
The key question, like in your case, is if I had a PM would it relieve my symptoms? He said it would surely address the pauses, but whether it would help with symptoms is just a big question mark. This doctor seemed to be keenly aware of the problems pacemakers can cause that other doctors have never even mentioned. That alone me makes me trust him more that most doctors.
I'd love it if you kept me posted on how things go for you in the future. Please pass on to me any revelations or experiences that pop up that you'd like to share, and I'll do the same.
I have not found any really good web discussion forums for this medical issue yet. If you find one, please let me know.
I wish you the best. Be well.
mick
Thank you for the reply. I understand your feeling of aloneness with this. I so often feel like I'm fighting a one man battle because there is so much misunderstanding. I suspect you feel that way too. Going through gobs of tests and getting no help when you know something is not right is really agonizing mentally. Before the night time bradycardia was discovered no test revealed anything wrong with me so I was stuffed into the "anxious patient" category and all that did was create anxiety for me that did not exist before. Even my wife began to believe I was suffering from just anxiety. It was a relief to get her back on my side after the nocturnal bradycardia was discovered.
As a general rule I am not anxious person at all. My anxiety level at the start of this horrid journey was almost nil because I basically never experienced any significant health problems before and figured this was something doctors could fix easily. As it became clear to me that doctors were not even on the same page as me as to what was going on, anxiety began to set in. I suspect you've had that same experience. It is so frustrating because the anxiety itself made me sicker which of course reinforced doctors beliefs that I was just suffering from anxiety.
There is no question in my mind that the kind of stress this has placed on me has indeed worsened my physical health which just seems like such an awful outcome of seeking help to begin with. There is also no question in my mind that some of what doctors have done have indeed harmed me and made me worse off.
One was the cardiac catheterization that was done early on. I was totally opposed to it since my history and symptoms simply did not point to coronary artery disease. I believed that if I had something wrong with my heart that it was most likely a valve problem or something electrical, and wanted to do those tests firsts. The doctor, however, said we had to do the cath because "I could die" if it was a coronary artery blockage.
As a person who exercised aerobically routinely, who had low cholesterol, low BP, and no family history of artery disease, I thought it did not make sense to perform a dangerous (by comparison to other tests that could have been done) catheterization. But after hearing the "you could die" phrase over and over, I gave in. I turned out to be correct - my coronary arteries were perfectly smooth - not a smidgen of plaque or blockage anywhere. I expected an echocardiogram and some sort arrhythmia testing to follow, but instead the doctor said he did not know what else to test and that was the end of it in his mind.
The day after the cath I developed a blood clot in my arm. That raised my anxiety - how could I think any other than "What did this doctor do to me?". He blew off my concerns about the blood clot saying that it had nothing to do with the procedure. A few weeks later, I developed a more serious deep vein clot in my leg and a pulmonary embolism. Now I definitely was anxious - how could anyone believe that these clots were not related to the catheterization? Well, of course the cardiologist who ordered it did not think they were related. No clots in my prior 52 years of life and then 3 immediately following the cath and they are not related?!! Sorry, I did not believe it then and I still don't believe it now.
In retrospect, I often think I would be better off now if I had not ever sought help from doctors to begin with. My symptoms and medical concerns before the cath were nothing compared to what I experienced after and what I experience now.
After the blood clots my anxiety was through the roof, and I believed I had every justification to be anxious. Doctors on the other hand blew all the post cath complaints off because, after all, my cath results showed absolutely no problems so I must be suffering from anxiety. What did that do? It drove my anxiety higher. Now I not only had all my initial symptoms, plus more, plus blood clots the cause of which no one could explain. To doctors these were not reasons to be concerned. It was the most surreal experience of my life at that point time (worse surreal experiences later however).
(I've seemed to have begun to prattle so I'll stop, but I'm going to leave the prattling paragraphs in case there are others who are having a similar experience so they can recognize that doctors do screw up, and they don't tell you when they do. So if you're having doubts about what your doctor tells you or does, don't ignore your doubts - immediately go to another doctor.)
To get back to your situation, Jay, it certainly does sound more like autonomic dysfunction than mine, and I am sorry to hear about what you go through. From a symptom perspective the thing we seem to have in common most are the chest pains. Your description matches my experience (post catheterization) almost exactly. I too have mitral valve prolapse, but with no regurgitation. That is something I've known for 20 years and one of the reasons I thought it made sense to check my heart valves at the start. I had not ever been concerned about MVP before. I just know that a doctor heard a murmur during a routine office visit and ordered a echocardiogram. It should MVP and he told me it was nothing to worry about, so I never did. That's when I had more trust for doctors though.
Have they monitored your heart at night? Do you have any episodes of bradycardia then?
I have not had any tests for AD so far. I don't even know what kind of tests could be done other than a tilt table test. Can you tell me about some of the other testing they have done on you? My primary care doctor talked to a doctor friend of his who specializes in AD, but that doctor said he did not think there was any worthwhile tests he could perform on me so nothing has happened in that realm.
Going to Leciester, UK, bit is impractical for me, but if you thought this doctor would be willing to consult via phone or e-mail, then I would love to get some contact information for him if you really think highly of him.
I saw a second EP cardiologist yesterday. He was a breath of fresh air for me compared to all the other doctor's I've seen over the past 3 years. He revealed more curiosity about my symptoms than any doctor I've seen so far. He in particular showed interest in my post cath blood clots (I've 3 more blood clots more over the 3 years since the three immediately after the cath) which is somewhat heartening to me. I'm hoping that will lead to some serious digging into the facts so that he will discover the correct and most vital ones. So far though he did not have any great advice for me, and he has no substantial plans at present other than to monitor my heart more and attempt to correlate the occurrence of pauses with symptoms. My other EP Cardiolgist suggested I have an implantable monitor like yours, but I've opted for a regular event monitor for the time being.
The key question, like in your case, is if I had a PM would it relieve my symptoms? He said it would surely address the pauses, but whether it would help with symptoms is just a big question mark. This doctor seemed to be keenly aware of the problems pacemakers can cause that other doctors have never even mentioned. That alone me makes me trust him more that most doctors.
I'd love it if you kept me posted on how things go for you in the future. Please pass on to me any revelations or experiences that pop up that you'd like to share, and I'll do the same.
I have not found any really good web discussion forums for this medical issue yet. If you find one, please let me know.
I wish you the best. Be well.
mick
Hi Mick
Im Jay, I'm in England and the best doctor Ive seen in relation to simular symptoms to you is an autonomic specialist Dr Fancourt of Glenfield Heart Hospital Leciester. Yes it is insanely difficult get doctors that understand these ailments. I dont know if you have simular doctors to his speciality where you are?
I am 30 years old now. Since I was a teenager I have had on and off bouts of dizziness, chest pain, palpatations. These can take hold for a week or several months then go away for months or years even, although for the past year its been a constant in my life - although less severe in the last few months.
I was only diagnosed a year ago when I collapsed in a post office with my two young children in tow... the hospital couldnt ignore that chaos, where before then I had loads of on and off tests all showing seemingly 'normal' results (although I am a strong believer that what is normal for one doesnt mean its normal for another and shouldnt be dismissed without looking at individual facts) I was given some silly excuses to 'explain' my symptoms - my favourite being 'its because your female, tall and slim'
Since diagnosis Ive had many stats recorded actually proving its not a figment of my imagination. My pulse fluctuates from mid 30's to 127 both at rest for no reason. blood pressure on a tilt table showed it drops really low on standing.. they stopped my test when it got as low as 40 systolic... they were too worried to let it go on and im glad as I was half unconscious within seconds. the highest ive seen it is 174/154 it usually is around 80/50 to 109/70 (pre midodrine which I now take 4 times a day - this helps stabailise it but it still jumps all over just not as much). I dont fit the actual defintion of POTS but my body does all the same things - bp drops, rate increases dizziness, syncope etc...
I also have a mitral valve prolapse with regurgitation although this is said to be mild/moderate and not likley to be causing the problems.
I also get intense pain in my chest, sudden gripping pain that puts me on the floor and takes my breathe. On other times I get dull ache, bruised feeling which can last hours, I always get a headache after intense pain.
I get out of breathe and tired very easily although im not over weight.
I have been told I have autonomic dysfunction which mostly effects my blood pressure and pulse. They have considered beata blockers to slow my rate but cant give it because it also goes bradycardic, and they have thought about giving me a pacemaker - BUT at the minute my cardiologist is not sure if that is going to help as he is not sure it would work... if the AD is causing the rate problems then the PM could sit and become an observer - be overridden if you will by the AD and a PM at my age is seen as risky and complicated as the wires etc dont last forever.
I would urge you to get as many AD tests as they will give you before having a PM as if what causes your bradycardia is AD related then a PM might not even work for you!
But it is a long and bumpy road. Autonomic dysfunction can take hold of ANY part of your body - everything that you do subconsciously: heart rate, blood pressure, breathing, sweating, body temperature, digestion, muscle spasms, parts of vision, libido, vein constriction, the list goes on, and sadly no cure only ways to manage it and its not an exact science.
I have currently got a implanted cardiac monitor to see if the heart is a problem on its own for me or if it caused by the AD Im not sure how they will get these answers yet but at least they are trying to find out that the PM or Ablation (another option they have mentioned) is going to be of actual benefit not a hinderance.
In the uk I feel very alone with this I cant seem to find uk forums and i know of no one who suffers the same. My cardiologist has only ever met one other in his entire career.
Sorry to rabbit on, this is the first forum Ive wrote on and I seem to of let it all spill out...
I hope you get the answers you need :)
Im Jay, I'm in England and the best doctor Ive seen in relation to simular symptoms to you is an autonomic specialist Dr Fancourt of Glenfield Heart Hospital Leciester. Yes it is insanely difficult get doctors that understand these ailments. I dont know if you have simular doctors to his speciality where you are?
I am 30 years old now. Since I was a teenager I have had on and off bouts of dizziness, chest pain, palpatations. These can take hold for a week or several months then go away for months or years even, although for the past year its been a constant in my life - although less severe in the last few months.
I was only diagnosed a year ago when I collapsed in a post office with my two young children in tow... the hospital couldnt ignore that chaos, where before then I had loads of on and off tests all showing seemingly 'normal' results (although I am a strong believer that what is normal for one doesnt mean its normal for another and shouldnt be dismissed without looking at individual facts) I was given some silly excuses to 'explain' my symptoms - my favourite being 'its because your female, tall and slim'
Since diagnosis Ive had many stats recorded actually proving its not a figment of my imagination. My pulse fluctuates from mid 30's to 127 both at rest for no reason. blood pressure on a tilt table showed it drops really low on standing.. they stopped my test when it got as low as 40 systolic... they were too worried to let it go on and im glad as I was half unconscious within seconds. the highest ive seen it is 174/154 it usually is around 80/50 to 109/70 (pre midodrine which I now take 4 times a day - this helps stabailise it but it still jumps all over just not as much). I dont fit the actual defintion of POTS but my body does all the same things - bp drops, rate increases dizziness, syncope etc...
I also have a mitral valve prolapse with regurgitation although this is said to be mild/moderate and not likley to be causing the problems.
I also get intense pain in my chest, sudden gripping pain that puts me on the floor and takes my breathe. On other times I get dull ache, bruised feeling which can last hours, I always get a headache after intense pain.
I get out of breathe and tired very easily although im not over weight.
I have been told I have autonomic dysfunction which mostly effects my blood pressure and pulse. They have considered beata blockers to slow my rate but cant give it because it also goes bradycardic, and they have thought about giving me a pacemaker - BUT at the minute my cardiologist is not sure if that is going to help as he is not sure it would work... if the AD is causing the rate problems then the PM could sit and become an observer - be overridden if you will by the AD and a PM at my age is seen as risky and complicated as the wires etc dont last forever.
I would urge you to get as many AD tests as they will give you before having a PM as if what causes your bradycardia is AD related then a PM might not even work for you!
But it is a long and bumpy road. Autonomic dysfunction can take hold of ANY part of your body - everything that you do subconsciously: heart rate, blood pressure, breathing, sweating, body temperature, digestion, muscle spasms, parts of vision, libido, vein constriction, the list goes on, and sadly no cure only ways to manage it and its not an exact science.
I have currently got a implanted cardiac monitor to see if the heart is a problem on its own for me or if it caused by the AD Im not sure how they will get these answers yet but at least they are trying to find out that the PM or Ablation (another option they have mentioned) is going to be of actual benefit not a hinderance.
In the uk I feel very alone with this I cant seem to find uk forums and i know of no one who suffers the same. My cardiologist has only ever met one other in his entire career.
Sorry to rabbit on, this is the first forum Ive wrote on and I seem to of let it all spill out...
I hope you get the answers you need :)
Thanks for the comment. Yes, one of the cardiologist I've seen is a electrophysiologist and he does work out of a major teaching hospital (BJC in St. Louis). The regular cardiologist also works out of that same institution and is a professor at Washington University. I have an appointment with another EP cardiologist at Washington U coming up.
Is the cardiologist you were referred to an electrophysiologist? That's probably the type of specialist you need to see at this point. Also, is this specialist practicing out of a major teaching hospital? If not, you've probably got to go to someone at a big teaching hospital to get more expertise at this point. If you need help finding one in your area, let us know and and we can work some google magic for you. ;-)
One more time: nocturnal bradycardia. I see what was happening - spell check does not have bradycardia in it but does have tachycardia.
I apologise for my many typos in my above reply. There was one critical mistake in my reply. In the 1st paragraph, 2nd sentence I said "nocturnal tachycardia" when I meant "nocturnal tachycardia".
I have had two sleep studies. I had an in home sleep study months ago after the heart monitor revealed the nocturnal tachycardia and pauses. That study did not reveal anything abnormal (or so I was told). It showed n episodes of apnea, a few short episodes of very mild snoring, a drop in heart rate into the 40s, and a drop in O2 saturation just before I woke up.
Last week I had a full sleep study at a sleep center. I showed 3 episodes o tachycardia where my heart slowed to the 20 nom range, then paused for 4 to 6 seconds. These episodes all occurred during REM sleep. There was no evidence of apnea.
Interestingly, at my appointment with the sleep doctor before the full study I brought abstracts from 3 medical journal articles describing my experience exactly - heart pauses during REM sleep. He briefly looked at the abstracts and said that could not be my problem because that rare phenomena has only been observed in people of Japanese descent, and the all died in their twenties. I'm not Japanesese, and I'm 55.
When I asked him about that assertion after the study revealed that in fact that my pauses only happened during REM sleep, he changed his story and said the abstracts I gave him talked about tachycardia, which they did not. I mention this because it is such a clear example of the "not invented here" syndrome that so many doctors suffer from. I.'ve run into that so many times - things that patients suggest are immediately disregarded because obviously all patients are stupid and doctors are smart - at least that is the way doctors want it to be to satisfy their egos.
I'm still in limbo with no satisfying answer to my problem. The sleep doctor referred me to a cardiologist. I assumed the cardiologist he referred me to was someone special who had expertise in this area, but it turns he was just another cardiologist with no more knowledge about the condition than me or the previous cardiologists that I've seen. None of them have shown any interest in delving into the issue which is mind boggling to me. Why do they not want to figure this thing out? Why do they not want to help? They are all perfectly comfortable saying "I don't know", offering no positive suggestions that move even a millimeter closer to a solution, and charging me for doing nothing. I absolutely do not understand doctors attitude. I cannot comprehend the reluctance to put fort some genuine effort. Hence, the reason for me turning to the internet for help.
Last week I had a full sleep study at a sleep center. I showed 3 episodes o tachycardia where my heart slowed to the 20 nom range, then paused for 4 to 6 seconds. These episodes all occurred during REM sleep. There was no evidence of apnea.
Interestingly, at my appointment with the sleep doctor before the full study I brought abstracts from 3 medical journal articles describing my experience exactly - heart pauses during REM sleep. He briefly looked at the abstracts and said that could not be my problem because that rare phenomena has only been observed in people of Japanese descent, and the all died in their twenties. I'm not Japanesese, and I'm 55.
When I asked him about that assertion after the study revealed that in fact that my pauses only happened during REM sleep, he changed his story and said the abstracts I gave him talked about tachycardia, which they did not. I mention this because it is such a clear example of the "not invented here" syndrome that so many doctors suffer from. I.'ve run into that so many times - things that patients suggest are immediately disregarded because obviously all patients are stupid and doctors are smart - at least that is the way doctors want it to be to satisfy their egos.
I'm still in limbo with no satisfying answer to my problem. The sleep doctor referred me to a cardiologist. I assumed the cardiologist he referred me to was someone special who had expertise in this area, but it turns he was just another cardiologist with no more knowledge about the condition than me or the previous cardiologists that I've seen. None of them have shown any interest in delving into the issue which is mind boggling to me. Why do they not want to figure this thing out? Why do they not want to help? They are all perfectly comfortable saying "I don't know", offering no positive suggestions that move even a millimeter closer to a solution, and charging me for doing nothing. I absolutely do not understand doctors attitude. I cannot comprehend the reluctance to put fort some genuine effort. Hence, the reason for me turning to the internet for help.
yes i agree about the sleep study n i can feel your pain. ive been suffering for a really long time. years. its like u speak my mind about the doctors who supposed to identify and help but do the opposite instead. and the disease caused u too feel depressed not tge other way around.
although my worst problem is palpitation n tachycardia. but sometimes when i was lying on bed before sleep n check my pulse my HR falls to 48 :( so its complicated
although my worst problem is palpitation n tachycardia. but sometimes when i was lying on bed before sleep n check my pulse my HR falls to 48 :( so its complicated
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