JimL Posted February 19, 2019 Report Share Posted February 19, 2019 Well, I went to the cardiologist today and he said I have POTS or as he called it neuro cardiogenic syncope or something like that. He sent me to a different specialist that allegedly works with that. I got the feeling POTS isn't his thing. He wanted to verify it, but then what? More specialists, no more sick or vacation time left and it gets tough to do the job with POTS. I just wish they'd get to the bottom of it already. And on top of this, my wife thinks it's all in my head. Quote Link to comment Share on other sites More sharing options...
Pistol Posted February 19, 2019 Report Share Posted February 19, 2019 Neurocardiogenic syncope is not POTS - but it is a dysautonomia. I have both ( and meny people do ). How did your doctor make the diagnosis - based on your TTT ( or HUTT )? Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted February 19, 2019 Report Share Posted February 19, 2019 Some doctors don't know what to do with you after the diagnosis. My cardiologist tried to send me to an EP cardiologist. The EP cardiologist told him to send me to a specialist 3 hours away. It was a good choice. That being said my cardiologist started me on beta blocker to get my HR down. He was willing to learn about it. He had never seen it. Quote Link to comment Share on other sites More sharing options...
Astrogrl Posted February 20, 2019 Report Share Posted February 20, 2019 I don’t know if it is financially feasible, but if so and if you work at a large enough company, you can actually apply for intermittent FMLA leave to deal with your own chronic condition. It is leave without pay, but one in which your job is protected. Quote Link to comment Share on other sites More sharing options...
JimL Posted February 20, 2019 Author Report Share Posted February 20, 2019 3 hours ago, Pistol said: Neurocardiogenic syncope is not POTS - but it is a dysautonomia. I have both ( and meny people do ). How did your doctor make the diagnosis - based on your TTT ( or HUTT )? Tilt table. I passed out at one point. About 5 minutes after I got the nitro, maybe 25 minutes in tops. When he said neurocardiogenic syncope, I said POTS, he said yes. Quote Link to comment Share on other sites More sharing options...
JimL Posted February 20, 2019 Author Report Share Posted February 20, 2019 3 hours ago, StayAtHomeMom said: Some doctors don't know what to do with you after the diagnosis. My cardiologist tried to send me to an EP cardiologist. The EP cardiologist told him to send me to a specialist 3 hours away. It was a good choice. That being said my cardiologist started me on beta blocker to get my HR down. He was willing to learn about it. He had never seen it. Yeah, he's sending me to an EP Cardiologist that allegedly deals with POTS/Syncope. Worse comes to worse I could try Mayo, but it takes forever to get an appointment there. Quote Link to comment Share on other sites More sharing options...
JimL Posted February 20, 2019 Author Report Share Posted February 20, 2019 3 minutes ago, Astrogrl said: I don’t know if it is financially feasible, but if so and if you work at a large enough company, you can actually apply for intermittent FMLA leave to deal with your own chronic condition. It is leave without pay, but one in which your job is protected. I have short and long term disability insurance. Thing is, I am out of sick days, so I'd have to pay for my insurance when out which would eat up quite a bit of the insurance. I work for the state and what sucks is that our sick time accrues at half of what vacation time does. I don't use much vacation time and we're underpaid to begin with, but don't get me started. I have 5 years until I can retire. I'd hate to screw it up, but if I can't figure this out, I may have to bail. Quote Link to comment Share on other sites More sharing options...
Astrogrl Posted February 20, 2019 Report Share Posted February 20, 2019 I’m in a similar situation with sick time. It is unfortunate that there is so little accommodation in the system for people dealing with chronic conditions. I hope you find a way to make it all work! Quote Link to comment Share on other sites More sharing options...
JimL Posted February 20, 2019 Author Report Share Posted February 20, 2019 1 minute ago, Astrogrl said: I’m in a similar situation with sick time. It is unfortunate that there is so little accommodation in the system for people dealing with chronic conditions. I hope you find a way to make it all work! Me too. Quote Link to comment Share on other sites More sharing options...
chimeraskeep Posted February 20, 2019 Report Share Posted February 20, 2019 Jim, I'm very sorry you are going through a tough time, but you are actually quite fortunate to have received these diagnoses. Many people with conditions like POTS just continue to go undiagnosed because it takes a keen, informed physician to spot them. It is important that you do see a doctor who specializes in dysautonomia not only for treatment, but also because often there is some underlying illness/disorder that is causing it. You may want to look into neurologists who specialize in this area unless the cardiologist you see seems thorough. I don't know what your employers are like, but perhaps it would be best to keep them informed of your doctor visits, educate them on your diagnoses, etc.? Maybe if they understand what you are suffering from, they will have empathy and try to be lenient somehow? By the same token, you also must be lenient with yourself -- It is far too easy for people in our situations to be hard on ourselves, blame ourselves, try to push ourselves beyond our limits, and tell ourselves we should somehow be in control of our symptoms, or that they are "all in the mind", as some loved ones around us insist. Advocate for yourself, and let people (e.g., your wife) know that this type of thinking is not okay. Best of luck to you! Quote Link to comment Share on other sites More sharing options...
JimL Posted February 21, 2019 Author Report Share Posted February 21, 2019 8 minutes ago, chimeraskeep said: Jim, I'm very sorry you are going through a tough time, but you are actually quite fortunate to have received these diagnoses. Many people with conditions like POTS just continue to go undiagnosed because it takes a keen, informed physician to spot them. It is important that you do see a doctor who specializes in dysautonomia not only for treatment, but also because often there is some underlying illness/disorder that is causing it. You may want to look into neurologists who specialize in this area unless the cardiologist you see seems thorough. I don't know what your employers are like, but perhaps it would be best to keep them informed of your doctor visits, educate them on your diagnoses, etc.? Maybe if they understand what you are suffering from, they will have empathy and try to be lenient somehow? By the same token, you also must be lenient with yourself -- It is far too easy for people in our situations to be hard on ourselves, blame ourselves, try to push ourselves beyond our limits, and tell ourselves we should somehow be in control of our symptoms, or that they are "all in the mind", as some loved ones around us insist. Advocate for yourself, and let people (e.g., your wife) know that this type of thinking is not okay. Best of luck to you! My wife thinks it's in my head. She doesn't understand why I can't just push through it, like she would. The cardiologist wants me to see a EP Cardiologist that deals with elements of this. I could go to mayo, but I didn't have a good experience there. It took two months to get in and then the eye specialist was pissed because she said she didn't have my records and I contacted my PCP and eye doctor twice to send them over and allegedly they did and at the end of the visit it was like, yeah, you have double vision from 4th cranial nerve palsy that you've probably had for awhile but your brain stopped compensating. That was it. My regular eye doctor gets the report and says see me in a year. Thanks Mayo. If this turns out bad I am thinking maybe I should get a lawyer. How many Dateline and 20/20's do we watch about stuff like this where the patients were labeled and the doctors were wrong and yet it continues. Quote Link to comment Share on other sites More sharing options...
chimeraskeep Posted February 21, 2019 Report Share Posted February 21, 2019 That's why it is important for you to see someone who specializes in dysautonomia - often it's a neurologist. If you go to the eye doctor, they're just going to diagnose whatever eye problem you might have. If you go to a gastroenterologist, they'll just focus on your stomach, you know? This is a whole-body illness, and you need someone who knows how to see the full picture. As for your wife, she sounds just a bit ignorant, meaning she just doesn't get it. Have you maybe sat down together and looked at a few dysautonomia websites together? Maybe you should even take some time to write down/list all your symptoms, and also see how they may be related to POTS/dysautonomia or syncope? Then you will be better equipped to educate her... but first and foremost, she needs to know and accept that these diagnoses are REAL, that these conditions are PHYSIOLOGICAL, NOT psychological, and you canNOT simply push through the symptoms, nor would she be able to if she were the sufferer, and her wanting for you to just push through is a cruel expectation. Quote Link to comment Share on other sites More sharing options...
Pistol Posted February 21, 2019 Report Share Posted February 21, 2019 52 minutes ago, JimL said: My wife thinks it's in my head. She doesn't understand why I can't just push through it, like she would. I used to think I can push through it, ignore it, control it, will it away --- and I made things much, much worse. Check out thedysautonomiaproject.org website or the book - it explains a lot of what we deal with to people ( family or doctors ) that do not yet get it. Quote Link to comment Share on other sites More sharing options...
JimL Posted February 21, 2019 Author Report Share Posted February 21, 2019 2 hours ago, chimeraskeep said: That's why it is important for you to see someone who specializes in dysautonomia - often it's a neurologist. If you go to the eye doctor, they're just going to diagnose whatever eye problem you might have. If you go to a gastroenterologist, they'll just focus on your stomach, you know? This is a whole-body illness, and you need someone who knows how to see the full picture. As for your wife, she sounds just a bit ignorant, meaning she just doesn't get it. Have you maybe sat down together and looked at a few dysautonomia websites together? Maybe you should even take some time to write down/list all your symptoms, and also see how they may be related to POTS/dysautonomia or syncope? Then you will be better equipped to educate her... but first and foremost, she needs to know and accept that these diagnoses are REAL, that these conditions are PHYSIOLOGICAL, NOT psychological, and you canNOT simply push through the symptoms, nor would she be able to if she were the sufferer, and her wanting for you to just push through is a cruel expectation. My wife doesn't believe in doctors. She thinks the only doctor one should see is the medical examiner. One of her brothers had appendicitis and had to go to the hospital and her mom said she had to take a shower first. When I had spine surgery last October I was in the hospital for 5 days and she visited once. Quote Link to comment Share on other sites More sharing options...
Guest ScottS Posted February 21, 2019 Report Share Posted February 21, 2019 Not having the support and understanding of your wife must be hard. For what it's worth, I feel for you. I struggle to understand when a person is either unwilling or unable to see beyond herself and her own personal wants and needs when someone dear to her is struggling with their health. Quote Link to comment Share on other sites More sharing options...
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