POTS Diagnosis

[Megannnnn]

For the past four or so months I have had undiagnosed symptoms. I get dizzy upon standing up, very lightheaded, nauseous, have terrible sleep patterns, cannot excercise, and it is very hard to get out of bed most mornings. I have had pseudo seizures very frequently in the past year or so. I have been to the doctors and they have run multiple blood tests and they all came back normal.

I brought up POTS to my doctor after talking to my aunt who is a nurse. My doctor was hesitant and told me to see a cardiologist. I have to wait to see the cardiologist for a couple more weeks. Just wondering if anyone who has POTS recognizes my symptoms and if the cardiologist appointment is worth it. 

[jklass44]

@Megannnnn I’m sorry to hear about your symptoms. Most regular family physicians won’t know much about dysautonomia, so I think the cardiology appointment is a good idea. Make sure to write down any questions you have so you don’t forget, and even having a journal of your symptoms/times/frequencies can be helpful for them to see!

You say the dizziness, lightheadedness, nausea, etc started about 4 months ago? Typically POTS symptoms must persist for at least 6 months, but I definitely understand how scary and frustrating it must be - 4 months is still a long time to be feeling so crappy. Did you recently suffer from any sort of viral infection or trauma? Those can trigger dysfunction of the autonomic nervous system for sure. 

Best of luck at your cardio appointment!

[Pistol]

@Megannnnn - welcome to the forum, but I am sorry that you feel that bad. Do you have tachycardia with your symptoms? Before your cardiologist appointment check your HR lying down, after 1 minute of sitting and again after 1 AND 5 minutes of standing. If you have a BP monitor check that as well. If your HR goes up at least 30 BPM or goes above 120 BPM within 5 minutes of standing AND STAYS there it could be POTS. I would ask your PCP to check orthostatic Vital signs - or have your aunt that is a nurse do it for you. This is helpful for your doctor to know. Good luck!!!!!!! Be well. 

[bombsh3ll]

Hi Megann,

I have POTS and I have all the symptoms you describe apart from seizures. Checking your orthostatic vital signs and keeping a record to present to your cardiologist is a great idea. I would also tell the cardiologist what you have learned about POTS and why you think you may have it. This is not telling the doctor their job, it is providing useful information that will help guide the consultation. As a doctor myself although no longer able to work, I always found it a good thing when patients said what was on their mind if they were concerned about a particular condition rather than keeping quiet and hoping I'd read their mind. 

Of course, the patient may not be correct, but at least their concern can be addressed and reasonable conditions ruled out. Not every cardiologist is aware of POTS, certainly I had that problem myself when my tilt test was reported "normal" because my blood pressure didn't drop, but a good doctor will be open to learning and/or referring you to an appropriate specialist.

Best wishes,

B x

[Pistol]

@Megannnnn - I have hyperadrenergic POTS and suffer from both syncope and seizures. But my seizures are not pseudo-seizures, they are a result of extreme vasoconstriction which in turn causes cerebral hypoperfusion, in other words no circulation in the brain. I hope your seizures are not related to dysautonomia.