gossamer4448 Posted January 11, 2019 Report Share Posted January 11, 2019 So I went to see the doctor yesterday and he said by definition I could not have pots because my blood pressure went up. they had me do a poor man's tilt test in the office and I haven't eaten at all that day so standing naturally was hard on me.I start feeling sick and getting anxious so I couldn't even ask him all my questions.. I just feel like I'm getting nowhere with cardiologists.I have an appointment next week with my neurologist that I like I heard that they also deal with this because it's more of a brain issue then a heart one. I hope they can help I hope someone will listen to me I can't even get a diagnosis but I know something is very wrong. I did have a brain MRI that came out clear so it's not a tumor or anything but it is something. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted January 11, 2019 Report Share Posted January 11, 2019 So sorry you are not getting better help. My blood pressure rises along with HR when I stand, when I am in a POTS flare up--and when I was initially diagnosed. From what I understand this is not unusual for POTS patients. Quote Link to comment Share on other sites More sharing options...
Derek1987 Posted January 11, 2019 Report Share Posted January 11, 2019 I've only seen my autonomic dysfunction specialist once. She said I don't need compression stockings because my blood pressure was high (along with heart rate upon standing). At the same time she showed me a chart as if I was receiving a lesson in school of a person standing up and how over time, less and less blood gets to the brain. Wouldn't that be a drop in blood pressure? Or no? I'm confused. When I fainted the first time the paramedic said my pressure was coming back up in the ambulance. I honestly don't trust any doctor. I always do my own research. And most doctors have egos. Not all of them. Don't get me started on hospital doctors. Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted January 11, 2019 Report Share Posted January 11, 2019 My specialist is a neurologist. If you can't find a specialist try finding a young doctor. Or a NP. They seem a little more open minded and look things up before they answer a question they are not sure about. Quote Link to comment Share on other sites More sharing options...
jklass44 Posted January 11, 2019 Report Share Posted January 11, 2019 Sounds to me like you haven’t found a doctor that understands dysautonomia - How frustrating and I can totally relate! It’s good to hear that you’re still trying to find one. Keep at it! I was diagnosed by a cardiologist with an interest in POTS (not technically a specialist). My HR and BP both increase upon standing. Quote Link to comment Share on other sites More sharing options...
Pistol Posted January 12, 2019 Report Share Posted January 12, 2019 @gossamer4448 - when I get symptomatic ( even during TTT ) while standing up my HR and BP go up . As far as I know the criteria is : increase in HR 30 BPM within 5 minutes of standing without a DROP in BP - I have not heard that an INCREASE in BP disqualifies you from a POTS diagnosis. I would ask for a second opinion as well as for a referral to specialist ( or at least a doctor experienced in dysautonomia ) You insurance HAS to help you find proper care - call them and ask for a casemanager. These are specially trained nurses that know the rules of your insurance but also help you maneuver trough the rules to get the treatment you need. They can help you with any other needs you may have too ( wheel chair ). Quote Link to comment Share on other sites More sharing options...
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