Brokenlittleteapot

I deal with this exact thing. Sometimes it hits me even when I’m awake for no reason. I’m miserable, but I’m definitely keeping you company lol. Sending love xx

Has anyone else had bradycardia at night and tachy during the day? Ugh and my PVCs are so bad sometimes I can barely breathe! They will probably want to change my meds, but this is all just a pain in the ***.

Ugh, bless you sweetheart. I am so sorry there is not proper dysautonomia care in Scotland!! If you ever need someone to vent to, please don't hesitate to message me as I can understand part of your frustration as many doctors called me looney before my diagnosis and sent me away after giving me a very PUBLIC very awful tongue lashing. I even had one doctor humiliate me by telling me "well if youre that bad off, you need to be in a nursing home or a looney bin. You're perfectly healthy so I would choose the ladder." ALSO EDIT; I had to go to "learning" hospitals hours away or "expiriemental" hospitals to get a proper diagnosis.

Found out that I need a full time walker or wheelchair. I am 24 and can't even make it across the room, two and a half months ago I was walking fine. This is so hard and frustrating, I want to cry but I'm not gonna let this illness win.

Benadryl seems to help some of my symptoms *NOT anymore lmao now it causes hectic heart rhythm

Thank you for that, I really needed to hear it! I've been so scared and concerned! I was also scared of an adrenal tumor so I had them do a CT scan of the abdomen. It was that bad!

Thank you Debbie Rose 💗💞 much appreciated. Has anyone else had a severe drop in BP when sleeping? Because mine got to 87/48 last night and I felt awful/sleepy all day. And it legit scares me. All the doctors are telling me I won't die but it sure feels like I will , ah Dysautonomia. The joy. Not. Lol

The EXACT same thing happened to me! The nitro glycerine and everything.

Does anyone else experience "moving walls" or vision disturbances?

What does neurocardiogenic syncope mean? Is that a side effect of pots?

I believe Dr POTS is the one who helped discover and diagnose POTS first. How long have you been diagnosed? Did yours happen to you all of the sudden like mine did? If I may ask

Thank you, I needed to hear this. And the IST confused me too, but apparently it's common in dysautonomia and can go hand in hand with pots.

I wasn't trying to complain, I was just already disabled before this so I was really feeling down. I know it took my friend five years to get diagnosed. I was just lucky because she set me up with a cardiologist who studied under "dr pots" so he knows about pots. Did anyone else black out during their TTT?

I am so sorry you had to go through that! I'm going through the same. I have to keep reminding myself that I've had two nationally accredited cardiologists tell me that this isn't cardiac and that I have a fantastic heart, because sometimes I get so scared. It causes me a ton of anxiety too, I'm assuming that's normal. I hate the vision changes, and I also hate the light headedness and chest tightness the most. I am Allie by the way, it is nice to meet you.

Bless you for that link. It's like reading my own story. I swear I woke up one day and this was my life. I can barely move without losing all of my energy and becoming tacky, even sitting upright!! I'm in hospital currently while they Guinea Pig medications on me.

Did you also have an issue with your BP rising and falling as well? And did you feel like you were going to die? Or have a stroke?

My life turned upside down within two months. I developed random numbness in my left arm, tachycardia, and chest tightness and ever since have been terrified of a heart attack. After an extensive hospital stay I was diagnosed with POTS and IST as well as Dysautonomia. I've had 3 echos, more than 10 ekg, atleast 15 troponin tests, a nuclear medicine stress test, a TTT, numerous chest x-rays, and finally a CT coronary angiogram. And yet here I am, still terrified that something was missed and that I'm on the verge of a heart attack. my symptoms during these attacks are; numbness in left arm/burning pain goes to neck burning pain in chest feeling of doom tachycardia PVCs other times; weakness chest tightness tachycardia even when lying down barely able to move from exhaustion anxiety migranes vision changes such as blurry vision and vertigo is it possible this is just dysautonomia? Is it possible something was missed from all of those heart tests? I feel like I'm going to die every single night and I'm suffering. This is so dibilitating and I'm so heartbroken, please help.