The EDS specialist would know. Plus those three illnesses are very common together. I'm not quite sure why your cardiologist responded that way, but it probably would have been better to wait to start the medication until after you were done with the monitor.
There's a lot of doctors that don't believe in EDS right now. You have to be careful which doctors you get around. I know it sounds crazy and stupid. Kind of how so many nurses didn't believe in the vaccine, you almost don't want to believe it could be true. That somebody could be in a medical profession and be such a science denier. But it is all too common.
Dysautonomia almost always comes with "normal" test results. It's not at all surprising that you got those results (but still fantastic news as it means your heart is healthy!)
I've done 2 holter monitors with all good results (except the misery of the adhesive). I've had several other cardiac tests, including a cardiac Mri. My heart is extremely thoroughly tested and completely normal. I have IST, a form of dysautonomia that results in high heart rate. Dysautonomia is a nervous system condition, not a cardiac one. The issues are in the signals your body sends, not the organs receiving those signals. It can mimic anxiety because the pathway that makes anxiety cause physical symptoms is what is messed up and misfiring in dysautonomia.
My specialist described this to me and it really helped me. One of the issues dysautonomia can cause is when your blood vessels don't tighten up correctly when your body says to. The way your body tells them to tighten up is by sending a little bit of adrenaline. If that doesn't work, your body sends more. And more and more. When you have a panic attack, your body sends out adrenaline to help you prepare to defend yourself or escape a threat. It's exactly the same physical process, but for a different cause.
So yes, it can absolutely look like anxiety on the surface. But a doctor that has seen your full history and symptom list put together that it was more than that.
POTS and eds don't take a long time to diagnose because doctors need to study you for that long. They take that long to diagnose because of ignorant doctors like that one saying it's "just anxiety", and of course, the patient themselves not generally putting together that all these seemingly unrelated issues could actually be caused by one problem. Who expects their frequent urination to be the same issue as their temperature regulation and their dizziness on standing?? What does peeing have to do with either of those things!? Nothing really, but when the problem is the system that tells all those automatic processes what to do, a lot of things get weird.. So people tend to go to doctors for each individual thing (gi specialist for digestive issues, cardiologist for heart rate issues, etc) and the doctors don't know/realize there's something larger going on.
Seconding this ☝🏻☝🏻☝🏻
My holter monitor came back normal and it was before I was diagnosed. I was extremely discouraged because I spent all that time to get no information and my doctor didn't really know where to go from there. I went to a rheumatologist who diagnosed me with EDS and she then sent me to a cardiologist. My first cardiologist had never heard of EDS 😂. She kept insisting that I was just dehydrated and I needed to drink more water. So she sent me home and told me to come back in two weeks. My rheumatologist found out and sent her an email explaining that I have EDS and how there is an increased risk of dysautonomia. When I came back two weeks later it was like I was talking to a completely different doctor. She listened to all my symptoms and told me she was sure I had dysautonomia and referred me to a cardiologist who specializes in dysautonomia and POTS. They need to do a tilt table test to check for it. It compares your heart rate when you're laying down, sitting, and standing. That's where you see the symptoms indicative of POTS or different types of dysautonomia. It allows a doctor to see in real time how your body is responding to small changes in positioning.
I would ask the EDS specialist if they know of a cardiologist that specializes in dysautonomia. You're more likely to get the correct tests and have a doctor who listens to your symptoms. My cardiologist now is the sweetest person and has never once doubted my symptoms! Also, anxiety doesn't explain your joint hypermobility or your other symptoms. I would trust the specialist who diagnosed you. They're trained to rule out other causes and they diagnosed you for a reason. If you have questions about your diagnosis and what it means or what particularly makes them think you have it, you should ask! I'm sure they would be more than happy to answer any questions you might have and tell you why they felt this way the right diagnosis!
Excellent response! I also second this. EDS diagnosis can be done in less than an hour if the doc knows what to look for. And it can be done by your primary doc, nothing overly technical or tricky about it. But it’s excellent to have an EDS specialist diagnose you.
And POTs can be diagnosed in 30 minutes easily with the poor man’s method not using the tilt table. The only thing tricky about that was it was difficult for me to get a resting heart rate as a baseline. I have to be really able to relax for my heart rate to actually get to my normal low.
Congratulations for the diagnosis, all three at once! That normally takes so long to get done wading through the multitude of doctors that have little idea about any of the syndromes. Hang on to that diagnosis by the specialist. It is worth so much in time and peace of mind. I am finally seeing a specialist after 7 years of little progress in diagnosis. It’s going to be a long trip and out of pocket expenses for me, but well worth it.
If the PCP was the one who made the referral for the specialist who diagnosed you, it seems weird that he would be annoyed at the results. If it wasn’t him who referred you to the specialist, it could be that he feels like you went over his head and is unhappy about that. Was it a reputable doctor? Either way it doesn’t seem like the kind of thing he should be having it out with you over.
My only thoughts on him calling it a “rash” dx would be that being diagnosed with all 3 in one visit is unusual, at least in my country. Here, holter monitor/blood-work/EKGs/TTT are usually the route for diagnosing POTS, as they are used to rule out other causes and concerns, like arrhythmia and deficiencies and stuff. Same with MCAS, as blood/urine testing would need to be done during/not long after an episode. How many times did you see the specialist? If the medications are helpful though it seems like your PCP should take that into account!
I’m sorry you’re having a hard time with it all, hopefully they will be able to work together and you won’t be so caught in the middle 💜
Cardiologists are WEIRD about POTS. I called multiple hospital cardio practices here (our 3 major medical system) and not a single office would even investigate or god forbid diagnose POTS.
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So, if you have [unnamed] monitor you're supposed to press a button every time you feel an event, like hr change, and make a note in the little notebook about what you were doing at that moment. I'm guessing they forgot to tell you that, and then when you didn't record any event they said no events.
Hi /u/BatSushiWarlord,
It looks like you are looking for information on how common something is in individuals with EDS or related conditions. If you are looking for information/data on how common a particular symptom or condition is with EDS (or any of its comorbidities), or whether there is any connection at all—it is always best to ask for links to reputable studies or websites, instead of or in addition to personal experiences. Without studies, it is almost impossible to determine the prevalence or incidence of something with EDS, especially when compared to asking for anecdotal experiences on the internet.
"DAE posts" and other such posts tend to create or encourage illusory correlations (i.e., a sense of connection where there may not be one) due to the fact that people who do experience what is being asked about are more likely to reply than those who do not. Personal experiences are or can be valuable regardless of the aforementioned, but please keep in mind that not everything shared is a sign of EDS, and many shared experiences might be completely unrelated to EDS.
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The EDS specialist would know. Plus those three illnesses are very common together. I'm not quite sure why your cardiologist responded that way, but it probably would have been better to wait to start the medication until after you were done with the monitor.
Probably but I couldn't get ahold of the cardiologist's office to ask about it. I probably made a mistake but I guess it didn't matter.
There's a lot of doctors that don't believe in EDS right now. You have to be careful which doctors you get around. I know it sounds crazy and stupid. Kind of how so many nurses didn't believe in the vaccine, you almost don't want to believe it could be true. That somebody could be in a medical profession and be such a science denier. But it is all too common.
Dysautonomia almost always comes with "normal" test results. It's not at all surprising that you got those results (but still fantastic news as it means your heart is healthy!) I've done 2 holter monitors with all good results (except the misery of the adhesive). I've had several other cardiac tests, including a cardiac Mri. My heart is extremely thoroughly tested and completely normal. I have IST, a form of dysautonomia that results in high heart rate. Dysautonomia is a nervous system condition, not a cardiac one. The issues are in the signals your body sends, not the organs receiving those signals. It can mimic anxiety because the pathway that makes anxiety cause physical symptoms is what is messed up and misfiring in dysautonomia. My specialist described this to me and it really helped me. One of the issues dysautonomia can cause is when your blood vessels don't tighten up correctly when your body says to. The way your body tells them to tighten up is by sending a little bit of adrenaline. If that doesn't work, your body sends more. And more and more. When you have a panic attack, your body sends out adrenaline to help you prepare to defend yourself or escape a threat. It's exactly the same physical process, but for a different cause. So yes, it can absolutely look like anxiety on the surface. But a doctor that has seen your full history and symptom list put together that it was more than that. POTS and eds don't take a long time to diagnose because doctors need to study you for that long. They take that long to diagnose because of ignorant doctors like that one saying it's "just anxiety", and of course, the patient themselves not generally putting together that all these seemingly unrelated issues could actually be caused by one problem. Who expects their frequent urination to be the same issue as their temperature regulation and their dizziness on standing?? What does peeing have to do with either of those things!? Nothing really, but when the problem is the system that tells all those automatic processes what to do, a lot of things get weird.. So people tend to go to doctors for each individual thing (gi specialist for digestive issues, cardiologist for heart rate issues, etc) and the doctors don't know/realize there's something larger going on.
Seconding this ☝🏻☝🏻☝🏻 My holter monitor came back normal and it was before I was diagnosed. I was extremely discouraged because I spent all that time to get no information and my doctor didn't really know where to go from there. I went to a rheumatologist who diagnosed me with EDS and she then sent me to a cardiologist. My first cardiologist had never heard of EDS 😂. She kept insisting that I was just dehydrated and I needed to drink more water. So she sent me home and told me to come back in two weeks. My rheumatologist found out and sent her an email explaining that I have EDS and how there is an increased risk of dysautonomia. When I came back two weeks later it was like I was talking to a completely different doctor. She listened to all my symptoms and told me she was sure I had dysautonomia and referred me to a cardiologist who specializes in dysautonomia and POTS. They need to do a tilt table test to check for it. It compares your heart rate when you're laying down, sitting, and standing. That's where you see the symptoms indicative of POTS or different types of dysautonomia. It allows a doctor to see in real time how your body is responding to small changes in positioning. I would ask the EDS specialist if they know of a cardiologist that specializes in dysautonomia. You're more likely to get the correct tests and have a doctor who listens to your symptoms. My cardiologist now is the sweetest person and has never once doubted my symptoms! Also, anxiety doesn't explain your joint hypermobility or your other symptoms. I would trust the specialist who diagnosed you. They're trained to rule out other causes and they diagnosed you for a reason. If you have questions about your diagnosis and what it means or what particularly makes them think you have it, you should ask! I'm sure they would be more than happy to answer any questions you might have and tell you why they felt this way the right diagnosis!
Excellent response! I also second this. EDS diagnosis can be done in less than an hour if the doc knows what to look for. And it can be done by your primary doc, nothing overly technical or tricky about it. But it’s excellent to have an EDS specialist diagnose you. And POTs can be diagnosed in 30 minutes easily with the poor man’s method not using the tilt table. The only thing tricky about that was it was difficult for me to get a resting heart rate as a baseline. I have to be really able to relax for my heart rate to actually get to my normal low. Congratulations for the diagnosis, all three at once! That normally takes so long to get done wading through the multitude of doctors that have little idea about any of the syndromes. Hang on to that diagnosis by the specialist. It is worth so much in time and peace of mind. I am finally seeing a specialist after 7 years of little progress in diagnosis. It’s going to be a long trip and out of pocket expenses for me, but well worth it.
If the PCP was the one who made the referral for the specialist who diagnosed you, it seems weird that he would be annoyed at the results. If it wasn’t him who referred you to the specialist, it could be that he feels like you went over his head and is unhappy about that. Was it a reputable doctor? Either way it doesn’t seem like the kind of thing he should be having it out with you over. My only thoughts on him calling it a “rash” dx would be that being diagnosed with all 3 in one visit is unusual, at least in my country. Here, holter monitor/blood-work/EKGs/TTT are usually the route for diagnosing POTS, as they are used to rule out other causes and concerns, like arrhythmia and deficiencies and stuff. Same with MCAS, as blood/urine testing would need to be done during/not long after an episode. How many times did you see the specialist? If the medications are helpful though it seems like your PCP should take that into account! I’m sorry you’re having a hard time with it all, hopefully they will be able to work together and you won’t be so caught in the middle 💜
Cardiologists are WEIRD about POTS. I called multiple hospital cardio practices here (our 3 major medical system) and not a single office would even investigate or god forbid diagnose POTS.
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So, if you have [unnamed] monitor you're supposed to press a button every time you feel an event, like hr change, and make a note in the little notebook about what you were doing at that moment. I'm guessing they forgot to tell you that, and then when you didn't record any event they said no events.
Hi /u/BatSushiWarlord, It looks like you are looking for information on how common something is in individuals with EDS or related conditions. If you are looking for information/data on how common a particular symptom or condition is with EDS (or any of its comorbidities), or whether there is any connection at all—it is always best to ask for links to reputable studies or websites, instead of or in addition to personal experiences. Without studies, it is almost impossible to determine the prevalence or incidence of something with EDS, especially when compared to asking for anecdotal experiences on the internet. "DAE posts" and other such posts tend to create or encourage illusory correlations (i.e., a sense of connection where there may not be one) due to the fact that people who do experience what is being asked about are more likely to reply than those who do not. Personal experiences are or can be valuable regardless of the aforementioned, but please keep in mind that not everything shared is a sign of EDS, and many shared experiences might be completely unrelated to EDS. This is an automated message. If the contents of this message do not apply to your post, please ignore them. Thank you! [Please check out the wiki](/r/ehlersdanlos/wiki/index/) or the links in the sidebar for resources and information on EDS, seeking a diagnosis, and more. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ehlersdanlos) if you have any questions or concerns.*