Always_anastasia

I called my dr about back and pelvic pain ive been having . They wanted me to go to the ER and after 12 hours of wasting my life in the ER literally 12 hours the majority of that was spent in the waiting room . I finally get an MRI and I'm told they don't see anything wrong with my spine that would be causing me pain. BUT you have a cyst at the base of your neck and spine ....... Does anyone else have this ? Its called a syrinx or something weird. I've seen a lot of people on various pots information sites with multiple conditions . My question is how were the diagnosed and by who? I feel like I have more than just pots but a lot of my symptoms are being ignored.

😂 Are we talking about the same Dr? I didn't know she was recommended here .i mean if you have the money sure why not?? It simply means she's focused on helping a certain demographic unfortunately . It truly sucks that more dr's aren't aware of pots/ dysautonomia and we have little to work with. at this point we know more about the condition, than the "experts" don't want to sound mean ..but if every neurologist keeps writing me off with conversion disorder/ anxiety when I dont have any conversion disorder symptoms what should i do? Curse and scream ? Lol! That will solidify that. At this point im ready to throw in the towel.

@Pistolwow she's actually on the physicians list here...she must be good at what she does.i guess i just dont understand her pricing 😭

It was indeed a cardiologist. I had to fight like h*** to get the referral. We did do a TTT. The diagnosis of pots was called out almost instantly heart rate shot up 50+ bbm ! Which is outrageous 😂 not sure how I didn't passout considering i passout everywhere else. For treatment so far he just recomends a beta blocker ..but he hasn't found the right one i guess 🤷‍♀️ besides this im not even sure what kind of treatment I'm supposed to be getting as my experience with drs isn't a good one.however i am thankful he believed me and performed the TTT by my request. Travel out of state 😮🤯 wow!? This is crazy that we have to do all of this . Only problem is i haven't been able to work in 2 years , and travel isnt an option 😭 400 dollars ? Is that per visit or for all of your treatment ? Yup there's a lady here who says she specializes in pots and well she wants a lot of money and doesn't take insurance . Shes now treating covid patients at $1,000 patients who have pots or other disorders its 2,000 for the initial visit $1,000 for after care . There's a guy who does free consultations and also has good reviews ..but again doesnt take insurance ..i seriously dont understand why. My mom called my appointment today a waste of time, although i agree . I'm not sure what else to do . Im almost tired of fighting this.

Thank you! I took tour advice and went. I saw a doctor who doesn't know anything about pots 😂 im laughing now even though its upsetting that i was referred to someone who doesnt know about my condition. I asked him about pots he quickly said idk anything about pots you'll have to ask your cardiologist 🤪 Im considering going to dr's outside of kaiser...but apparently there aren't very many specialist that I'm aware of in colorado that dont want a $2,000 dollar deposit upfront. 🤪😮🤯 Who has that kind of money?? They took my blood pressure and heart rate lying down, sitting, and standing. This was the only thing out of the few tests that weren't normal. I did a few breathing test, and some vibrational test (not sure what its called ) these are both normal. My heart skipped once during the breathing test i could not get that thing to go to 20 let alone 40 😂 but surprise its normal 😂

Thank you for your response. That is my fear that everything will say normal. Of course if you aren't experiencing symptoms that sounds like a wonderful thing. But my symptoms are experienced daily,and are all over the place. I have no trust or confidence in this Dr,and that might be making things worse. I almost want to cancel my appointment 😭 i guess it's just my anxiety. Thanks again for the resources and response, i really appreciate it 🙂

Hello, I haven't been here since my pots diagnosis last year been a hectic time. My cardiologist has ordered autonomic testing with a neurologist ..and lord knows i hate ,and don't trust neurologist at all. Currently I've had to reschedule the appointment numerous times due to no fault of my own. Appointments were scheduled months in advanced, but its oh we cant see you because you're taking this medication, or i dont see this appointment on the schedule even though i was sent reminders for it..and now that im scheduled i don't have confidence in this appointment or the doctor. I'm not even sure what autonomic testing is or what its supposed to find . I've been trying to research on my own , but i feel like i might be psyching myself out at this point . Can anyone tell me what their experience was with autonomic testing? What do the drs look for ? What are the tests like? Can you pass fail etc ? Thank you 💕

Thank you so much pistol! Your posts are always so helpful and encouraging ❤️

Hello , Today my tilt test took place ....and I was finally diagnosed with pots ! Almost immediately the Dr diagnosed me , because my heart rate skyrocketed. I'm very happy I finally have a diagnosis.. However I did not passout/faint .. Which is most likely a good thing. But I faint quite often so I was shocked it didn't take place during the rest, but I was having what I consider a " good day" that may be the reason I didn't faint . My question is does pots cause fainting on its own or is it most likely something else involved ? Thank you

Several people have witnessed the seizures ...just not the neurologist .. when I first had a grand mal seizure .. the interns and Drs argued at my beside about rather it was a seizure or not. The interns were firm , and furious that it was a seizure and an EEG should be given and the Drs refused. After that I proceeded to have several episodes and because they are looking for epileptic patterns ,but believe I'm not having what they consider to be epileptic seizures they aren't too concerned about them . They happen several times a week, which is easy compared to when they first started . Thank you for the information about bp, as well as the seizure link. I still need to get a bp machine .so that I can catch the things that are happening myself. I believe I become more symptomatic before my monthly cycle ..I'm not sure why this is ..but my tilt test is scheduled for this week ..but it is after my cycle .I'm not sure how the rest will turn out because of this. The test is being ordered by a cardiologist , I believe it is only being ordered because I passed out right in the elevator on the way to his office and it became almost an emergency .

I have seizures...but I don't know if it's due to pots as I have no been diagnosed yet. I have always passed out or fainted rather since I was a young child...and then in my early 20' s I began to have seizures. It's been 5 years and I still have them .. But I'm wondering Do your seizures affect your speech and or your ability to walk properly??

Wow!!! This is me !! I have not been diagnosed with pots yet ...but I have seizures , and no neurologist has even put in the effort to figure out why. When this happens I feel as if my brain is tightening, releasing and then boom seizure. But not a single doctor knows what I'm talking about ..or what it is I'm trying to describe. Sorry to hijack

I've had this happen to me! If I stood up, I'd fall right back over .. luckily I was always near my bed when this happens. Also I can't walk in a straight line,with one foot in front of the other..I look like a baby learning to walk, no balance at all. I also tend to lean backwards , almost as if I'm being pushed. It's quite scary!

Thank you so much for the response as well as the article recommendations! I will definitely take time and read them . More importantly thank you for reminding me to document my heart activity ! I totally just would have been wearing the heart monitor and simply hoping it would catch something.. I will definitely take this approach and document everything from here on out.

Thank you for your reply, They say three days is the longest I can wear the monitor ...I don't know if this is true or not , but i just get the feeling nothing will happen in that time span. I believe the test will be read by cardiologist , as they are the ones who ordered it...but my concern is that none of them specialize in dysautonomia, LOL they probably don't even know what it is . Right now , I'm not symptomatic..and I actually feel great these past few days ...is it wrong of me to hope I start feeling symptomatic soon ? I'm dealing with Kaiser Permanente doctors , and I really hate them..at least the ones I deal with lol