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. 

5 hours ago, RecipeForDisaster said:

I found a great sounding doc here - she specializes in immune and allergy. Same kind of thing - lots of money up front, it costs money to ever talk with her office or ask a question, she won’t write orders, so many rules. I didn’t think it’d be worth the cost. Too bad, I am sure she is good.

😂 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 😭

2 hours ago, Pistol said:

Huh! Figures! I think all of us here have encountered docs that don't know beans about POTS. --- Who diagnosed you last year with POTS - was it your cardiologist? Did he do a TTT? And what has he done for treatment so far? If you do not feel you are getting proper treatment from your doc - have you looked at out physicians list? Unfortunately most of us have to travel out of state for specialist care, but you don/t really need a full-on specialist in autonomic disorders - a doc that understands POTS can do wonders. 

What 😵I have never heard of such amounts! My autonomic specialist asks for $ 400 if you don't have insurance that covers the visit. If that is how much they ask for a visit I would go out of state. 

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. 

12 hours ago, Pistol said:

@Always_anastasia - please don't cancel! If you are symptomatic then most likely it will show something. If the type of POTS can be narrowed down by the testing then that could lead to exploring other meds, which in turn could really improve your symptoms. 

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 😂

On 2/20/2021 at 3:24 AM, Pistol said:

Hello @Always_anastasia - I had autonomic testing done many years ago, before I was diagnosed. It was at a mayor autonomic clinic here in the US. They hooked me up to an EKG an other sensors and had me stand until I could not take it anymore. I remember my heart pounding after a while and that my feet turned blue. However - they said the testing was normal. Prior to that testing I had a TTT which showed NCS ( at that time ). Since the autonomic clinic was not able to help me I went to another specialist who diagnosed me on the spot with HPOTS, he checked my adrenaline levels just to confirm and they were high. 

There are other autonomic tests they can do, I am not sure what your neurologist will test. I would not worry - the testing is not uncomfortable. You can find more info here: 

Autonomic Testing for Dysautonomia - Dysautonomia, Disorders, Diagnostics & Info - Dysautonomia Information Network (DINET)

Good luck with your tests!

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 💕

On 2/22/2020 at 4:20 AM, Pistol said:

@Always_anastasia - you do not have to faint with POTS, as far as I remember only 30% of POTS patients faint. I personally do faint but I have both POTS and NCS ( neuro-cardiogenic syncope, also a dysautonomia ). In my case the fainting is caused by a sudden drop in HR following the tachycardia. 

I am happy you got a diagnosis, I know how important that is to know that there actually IS something wrong with you! But getting diagnosed is only half the struggle - now you need treatment and that can be a frustratingly long journey.  It takes a lot of hit-and-miss b/c there are so many causes for POTS and they all respond differently to medications.  Often the first med is a betablocker, for both POTS and NCS. However - it is important to follow the recommended increases in water/ salt intake and wear compression stockings. 

There is a good book that explains what happens in syncope, and it is written in plain English b/c it was written for patients. It is " THE FAINTING PHENOMENON" by Dr Blair Grubb, MD.  Another good resource for patients is the book " THE DYSAUTONOMIA PROJECT ", which was written for both patients and physicians and is a magnificent source of information. You can get it at the website with the same name and both of them at amazon. 

I wish you the best of luck and a rapid improvement of your symptoms. Please keep us updated on your progress!!!! 

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 

7 hours ago, Pistol said:

@Scout

@Always_anastasia - how often do you have these episodes? Have they ever been witnessed by anyone? Usually someone describing what you do during them is helpful to doctors. When I was at my worst I would have them anywhere - in doctors offices, on the street, in stores, in restaurants … so mine are usually witnessed and my doctors actually witnessed them themselves. Have they ever done an EEG? Have they done orthostatic Vital signs ( taking HR and pulse lying, sitting and standing ) - you can actually do this yourself if you have a BP machine. PM me if you need to know how. If this test is abnormal you can show your doc that you are legitimately a candidate for dysautonomia. 

I know exactly what you are talking about - good way to describe it!! If your neurologist does not take you serious than I personally would look for someone else. I am so sorry that you are alone in this - it is a very scary thing to go through.  To both of you - the following article describes some of this: 

https://www.epilepsydiagnosis.org/seizure/autonomic-overview.html

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 .

On 2/14/2020 at 5:42 PM, Nin said:

Just wondering if anyone else has siezures due to pots? If I push myself too much I can have a siezure. Was wondering if this is due to pots as it don't seem to come up siezures and pots

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??

On 2/14/2020 at 7:36 PM, Pistol said:

@Nin - yes, I have autonomic seizures. I have NCS and hyperadrenergic POTS and when my adrenaline soars I suffer from sudden, severe vasoconstriction. this stops the blood flow to my brain so abruptly that I take seizures that appear exactly like epileptic seizures. I had a longterm EEG in an epilepsy monitoring unit and when I had an episode thay found that it is due to the stopping of cerebral circulation that I seize. My HR at the time was high. I also experience sudden drops in HR that cause syncope from NCS. I used to have episodes several times a week but with medication, frequent IV fluids ( I have a port and get them at home ) and limiting my activity ( although exercising lightly every day ) I hardly ever get them anymore. If I am sick or stressed or do too much I have them but not often. 

These seizures have different names: convulsive syncope, autonomic seizures, hypoxic seizures, reflex anoxic syncope …. they are all caused by dysautonomia. I don't know why there is no information about this out there - I know of several people who have the same seizures. But I guess it is a bit rare, so not much gets written about this.  My autonomic specialist hs several patients with the exact same seizures, so it can't be THAT rare!

How are you coping, what meds do you take and what other measures do you take to stop them? I am sorry you are going through this, it is scary and frustrating!!! Wishing you well!

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. 

On 12/28/2019 at 9:51 AM, Sushi said:

How long will you be wearing the monitor? The trick is to catch an episode on the monitor—then your doctor (are they an electrophysiologist?) can see what it is. And yes, an ECG an show a lot. I have a tiny ECG device (a Kardia) that I always have with me so that I can record anything weird and email it to my EP.

This is the sort of thing it is great to catch but of course it may not happen again during your time on the monitor. There are many things that could cause this though one I hadn’t known about was a “pause” of a few seconds. The first time I noticed one it really was frightening. I was wearing a Polar HR monitor at the time and it clearly showed something happening but I didn’t know what it was until it was caught on a monitor. When my EP “caught” she treated it appropriately and it was a huge relief.

And, as @Pistol said, the next test would often be a TTT which can also give a lot of important information. Sometimes, if the monitor points to it, an echocardiogram may be ordered. It sounds like you have taken good steps and hopefully you will have a much better understanding of what is happening. Best wishes—the uncertainty and fear that can accompany these symptoms are difficult.

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 

I'm extremely happy to have found this site, I've been lurking for a few days ..and finally decided to join . 

I have not been diagnosed with dysautonomia , and with the Drs I have..I don't know if I will any time soon. 

I'm scheduled to wear a holter monitor ..I don't know if it will actually show anything .. lately I've been feeling super fatigued, and my heart has been racing. Of course when the Dr listens to my heart absolutely nothing is going on , normally I would be pissed.. but I expected them to say exactly that. 

Recently after I eat a meal , I feel exhausted and blackout/ sleep for 15 minutes after a meal and wake up to my heart beating like crazy. 

In the shower my heart beats like crazy, feels like I'm running a marathon and I'm only trying to shower ..I get dizzy, and extremely frustrated because my body hates cold water ..if I bend down I get dizzy, if I get up to fast I get dizzy. 

Last weekend I was short of breath my heart felt like it stopped and I passed out ..other people witnessed this event ,but of course when I go to the Dr ... everything sounds and looks wonderful. 

Do EKGs actually show anything ? 

If they did what was your next step?

And if it didn't ,what test did you do next ? 

I've been passing out since I was 9 years old and Drs keep looking at me like Im stupid .anyways sorry for the long rant , and I hope I posted this on the correct forum. 

I look forward to reading your replys 

Thank you .