jklass44 Posted November 14, 2018 Report Share Posted November 14, 2018 Hey all. Mini rant coming your way - hope you don’t mind! I ended up in the ER today from what was one of my more severe flares. Awful chest pains, tachycardic and lightheadedness when I woke up this morning, and of course it got worse as the morning went on because I tried to push through it! Anyways, I ended up fainting and came to drenched in sweat, convulsing and hypertensive (157/122 according to the paramedics that someone had called). The hospital nurses and even the doctor tried very hard to convince me that what I had experienced was a panic attack. Ha - nope! I do not have anxiety. The only thing that gave me anxiety was the fact that I couldn’t stop convulsing on the floor in the middle of a crowd hours prior! Of course I told the staff that I have a diagnosis of POTS, that I take medications for it, and tried to explain that I was just in a bad flare which can BRING ON and CAUSE anxiety. I could tell they didn’t believe me, so I requested to have a new set of vitals taken while I was still laying down and then again upon standing. HR in bed was 69, upon standing (even holding onto the nurse) it went up to 156. BP unchanged. It’s incredibly frustrating that this condition is so unknown to so many doctors, that even when you DO have a diagnosis, they still don’t believe you! As someone who works in medicine, I wish they would educate more students on the ANS... Quote Link to comment Share on other sites More sharing options...
Pistol Posted November 14, 2018 Report Share Posted November 14, 2018 I am sorry @jklass44 - but I do know what you are going through. I too take seizures when I get hypertensive from POTS and I also - of course!!!! - get anxious as soon as I feel a flare coming on. And yes - if it gets out of hand I have to go to ER and the same story as yours: it's either I am told I have a panic attack or I have even been told that I am faking it! There were times they even refused to give me IV fluids - despite the fact that I just had a seizure with soaring HR and BP in the ER!!! For the last several years my frustrated PCP just admitted me to the hospital for Observation and after 24 hours of fluids I walk out brand new. Until this summer when one hospitalist refused to admit me for fluids because "I can drink"!!!!! He said that IV fluids are just a placebo effect and POTS patients have to learn to hydrate better to avoid flares. ( Of course this hospitalist was young and felt he knew all there is to know - yet was not even educated on hyperadrenergic POTS!! Had no clue!!! ). So now I have a port, get home infusions weekly and prn for flares and have not only avoided hospitalizations or ER visits since then but also have drastic improvement in my day-to-day abilities. --- My cardiologist tells me that it is still very difficult to get MD's to accept POTS. When he goes to conferences and the subject of POTS comes up they all tune out, start talking or leave the room - they just don't want to hear about it. In my opinion that is because the concept of dysautonomia and it's cardio-vascular effects require them to throw out a lot of their theories and change their approach to medicine. THAT of course is too much for them to wrap their head around - aren't they the almighty and all-knowing cardiologists? Is it not the doing of the patient when he/she does not respond to their treatment recommendations? Fluids, salt, compression, betablockers … if that is not enough then the patient is either not compliant or ii is anxiety. --- As you see - we are in the same boat. Do you have a specialist that can review your meds? Have you ever tried IV fluids for your symptoms? It brings my BP and HR down immediately and chest pain, cold hands and feet etc disappear. Also - you could ask your specialist to write a letter which you can carry with you that explains your condition and treatment recommendations. That way you have something to give to the ER when you are too ill to fight with them. Best of luck - stay strong! Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted November 14, 2018 Report Share Posted November 14, 2018 I am sorry you had a rough day. I quit using the word POTS anymore when explaining what I have. I just say I have an uncommon tachycardic issue. Most nurses and doctors I don't usually deal with could care less beyond that. If they show interest I explain better. If not I just leave it. Good news is I rarely deal with medical personnel outside of my usual. I hope your flare calms down soon. I can't imagine how scary it is to have flares like that. Thankfully my POTS is relatively mild. I have never passed out yet and I hope I never do. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted November 14, 2018 Report Share Posted November 14, 2018 So sorry. I have been there too. What did they do for you in the ER. I hope they gave you fluids. For many of us IV fluids can help a lot to blunt the symptoms during a bad flare. Quote Link to comment Share on other sites More sharing options...
jklass44 Posted November 14, 2018 Author Report Share Posted November 14, 2018 @Pistol That’s very interesting about what your cardiologist said. I have a feeling that your theory may be right as to why they tune out - how unfortunate! A note from my cardio might be a good idea though, thank you. They didn’t do much at the ER. Chest rad (which I knew would be normal), blood and urine (drug screen which was also obviously normal). I asked for IVF at one point and mentioned that I had received them the last time, but they refused to give me any. Like you guys I feel much better after that, but it’s very hard to get isn’t it! Im not really sure what to do about possible med changes though, because I had been doing decent on the Clonidine and Ivabradine until this flare hit. Is a flare something you normally just have to ride out or does it indicate a change needs to be made? Quote Link to comment Share on other sites More sharing options...
Pistol Posted November 14, 2018 Report Share Posted November 14, 2018 @jklass44 - it depends in my case. If the seizure is a new thing for you it can mean that your dysautonomia is getting worse and you need to have your meds reviewed. In my case the seizures are "normal" finding with a flare and yes - I do ride it out (or get fluids and be done with the flare). But any new symptom alerts my docs to revisit my case and my treatments to fnd not only a potential cause for the flare but also if a change in meds may be indicated. I have found that this has shown a lot of benefit in determining what meds are essential and what meds may need to be tweaked a bit. Quote Link to comment Share on other sites More sharing options...
HangingByAThread Posted November 14, 2018 Report Share Posted November 14, 2018 I don't blame you for being upset. I get the "you must be having a panic attack" comment all the time as well - from first responders and in the hospital. I found what really helps is to record my episodes/EKG on my iPhone (I use AliveCor) and then bring that with me. I tell them that my electrophysiologist prescribed the device and then it usually turns into a show and tell session and they sort of start taking me seriously. So sorry you had to go through this. I hope you are feeling better. Quote Link to comment Share on other sites More sharing options...
jklass44 Posted November 14, 2018 Author Report Share Posted November 14, 2018 @Pistol Those are some good points. I’m glad the IVF really work for you. It is a new symptom for me so I should at least have a follow up conversation with my cardiologist. Thanks for your replies everyone. It really helps! Quote Link to comment Share on other sites More sharing options...
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