Back in the ER

[DizzyPopcorn]

Im at the ER after an ambulance trip. Went for a walk and when i came back home, i was out of breath, dizzy, heart pouding, etc. I couldnt calm down even laying, i was shaking, had a headache, my limbs were tingling. I honestly thought that i was done for and on my way to die. Well, guess it was just a panic attack. I feel wired atm and so tired its crazy. Im still undiagnosed.

 

 

Yay for another 20 hours of waiting time because apparently its not critical and my heart rate is only 90 and my oxygen is fine. But i need a few things to get checked so i will have to wait.

 

Sorry, had to vent.

 

How are you guys doing?

[Pistol]

@whoami - I am so sorry you have to go through an ER trip. I used to have to go to the ER often - my PCP would actually send me there from his office, unless he just admitted me directly. In my case - due to my symptoms of tachycardia, high BP, syncope and chest pains - they always had to do cardiac testing ( which ALWAYS came back perfectly normal ). What ususally was the fix for me were IV fluids - they stabilize my HR and BP and stop the syncopal episodes. I hope all will be well with you, that your tests show nothing serious and that you have kind, compassionate and knowledgeable doctors. Be strong - and be well!!!!!!

[DizzyPopcorn]

21 minutes ago, Pistol said:

@whoami - I am so sorry you have to go through an ER trip. I used to have to go to the ER often - my PCP would actually send me there from his office, unless he just admitted me directly. In my case - due to my symptoms of tachycardia, high BP, syncope and chest pains - they always had to do cardiac testing ( which ALWAYS came back perfectly normal ). What ususally was the fix for me were IV fluids - they stabilize my HR and BP and stop the syncopal episodes. I hope all will be well with you, that your tests show nothing serious and that you have kind, compassionate and knowledgeable doctors. Be strong - and be well!!!!!!

Thank you pistol! Yeah so far ecg, bp and heart rate is all ok. I still feel a bit weird? If that makes sense.

 

Its the first time ive felt like this in my entire life. Before the ambulance arrived, I looked at my father in the eyes and said "please call 911 right away - im dying"

 

Ugh so annoying. But i shouldn't complain, you've had it a lot worse.

 

Thanks for the support . I hope that my tests will show nothing serious too!

[Derek1987]

2 hours ago, whoami said:

Im at the ER after an ambulance trip. Went for a walk and when i came back home, i was out of breath, dizzy, heart pouding, etc. I couldnt calm down even laying, i was shaking, had a headache, my limbs were tingling. I honestly thought that i was done for and on my way to die. Well, guess it was just a panic attack. I feel wired atm and so tired its crazy. Im still undiagnosed.

 

 

Yay for another 20 hours of waiting time because apparently its not critical and my heart rate is only 90 and my oxygen is fine. But i need a few things to get checked so i will have to wait.

 

Sorry, had to vent.

 

How are you guys doing?

Sounds like a faint spell. My arms and hands tingle every time ive had a faint or near faint spell. It scares me so much. But theres so many people that go through it with this disease. The body is just trying to get blood and oxygen to your brain. Its still scary so i know how you feel.

[DizzyPopcorn]

51 minutes ago, Derek1987 said:

Sounds like a faint spell. My arms and hands tingle every time ive had a faint or near faint spell. It scares me so much. But theres so many people that go through it with this disease. The body is just trying to get blood and oxygen to your brain. Its still scary so i know how you feel.

Thing is, im not even diagnosed with POTS yet, but i suspect i do have it. So i still dont know if what i had was a faint spell or just a classic panic attack.

I left the ER 20 minutes ago because im feeling ok now and the doctor will probably just say its anxiety without giving me any test. So instead of wasting my time waiting for another 10+ Hours potentially catching something there ill just head back home and take more clonazepam as needed. Its just that this "whatever attack" took me by surprise and i seriously thought i was going to die. But yeah whatever that was, it was seriously scary.

 

[Derek1987]

1 hour ago, whoami said:

Thing is, im not even diagnosed with POTS yet, but i suspect i do have it. So i still dont know if what i had was a faint spell or just a classic panic attack.

I left the ER 20 minutes ago because im feeling ok now and the doctor will probably just say its anxiety without giving me any test. So instead of wasting my time waiting for another 10+ Hours potentially catching something there ill just head back home and take more clonazepam as needed. Its just that this "whatever attack" took me by surprise and i seriously thought i was going to die. But yeah whatever that was, it was seriously scary.

 

My first neurologist said i was having fainting issues due to anxiety. Wrongggg. Have you ever done a poor mans tilt table test? Something you can do at home with a blood pressure monitor?

[Scout]

@whoami I'm very sorry to hear you had that happen! 

My dysautonomia / hyperPOTS attacks feel really similar to a panic attack, and it can be hard to distinguish sometimes, because the release of adrenaline from hyperPOTS feels basically the same as a panic attack, however, I shake and shiver for quite a while afterwards — sometimes hours — with hyperPOTS attacks. 

As someone who has an anxiety disorder as well as dysautonomia, my heart goes out to you, because I know how hard it can be to be taken seriously.

I started to notice big differences between my hyperPOTS attacks, and panic attacks, and was able to extinguish which was which. For example, my hyperPOTS attacks always come after I have exerted myself (even in a small way), or when I am overly tired / in a flare. My BP bounces really low, then high, then back down again etc, and changes a lot with posture changes. Eating salt, as well as fluid loading, helps. 

I hope you're able to get some autonomic testing done. As mentioned above, perhaps do a test at home and monitor your BP, see how it changes with posture changes etc.

I wish you all the best! 

[lieze]

I’m sorry you had to go through that scary uncomfortable incident whoami. I’m glad you are okay.

[DizzyPopcorn]

8 hours ago, Derek1987 said:

My first neurologist said i was having fainting issues due to anxiety. Wrongggg. Have you ever done a poor mans tilt table test? Something you can do at home with a blood pressure monitor?

Yeah i did. Plenty of times. I have a 30-40 bpm increase from laying to standing. My bp doesn't change from what ive gathered. But its not perfect testing (beat to beat changes) so im waiting on my appointment with an autonomic specialist. The wait time is a bit long though. (well it is when you don't feel good)

 

1 hour ago, Scout said:

@whoami I'm very sorry to hear you had that happen! 

My dysautonomia / hyperPOTS attacks feel really similar to a panic attack, and it can be hard to distinguish sometimes, because the release of adrenaline from hyperPOTS feels basically the same as a panic attack, however, I shake and shiver for quite a while afterwards — sometimes hours — with hyperPOTS attacks. 

As someone who has an anxiety disorder as well as dysautonomia, my heart goes out to you, because I know how hard it can be to be taken seriously.

I started to notice big differences between my hyperPOTS attacks, and panic attacks, and was able to extinguish which was which. For example, my hyperPOTS attacks always come after I have exerted myself (even in a small way), or when I am overly tired / in a flare. My BP bounces really low, then high, then back down again etc, and changes a lot with posture changes. Eating salt, as well as fluid loading, helps. 

I hope you're able to get some autonomic testing done. As mentioned above, perhaps do a test at home and monitor your BP, see how it changes with posture changes etc.

I wish you all the best! 

Hey scout, thanks for encouraging me . Thing is, i never had a problem with exercise until today. I started having trouble breathing midway and by the time i reached home, i couldn't calm down. Was having a full blown panic attack and laying down didn't help. I feel sorry for how you are feeling. I don't know how you can manage.

50 minutes ago, lieze said:

I’m sorry you had to go through that scary uncomfortable incident whoami. I’m glad you are okay.

Thank you lieze, hopefully i can have some good days ahead of me 😨

[Pistol]

1 hour ago, Scout said:

I started to notice big differences between my hyperPOTS attacks, and panic attacks, and was able to extinguish which was which. For example, my hyperPOTS attacks always come after I have exerted myself (even in a small way), or when I am overly tired / in a flare. My BP bounces really low, then high, then back down again etc, and changes a lot with posture changes. Eating salt, as well as fluid loading, helps. 

@Scout - I experience these attacks as well, although not as often any longer. My most recent one was while the nurse was here to access my port on Friday. I was on the floor crawling to get to the bed ( my BP swings crazy like your does in fare as well ) and passed out. Afterwards, in bed, I am trembling, shaking like in a deep freeze all over, teeth shattering, cold hands and feet and -yes, anxiety over my symptoms and that I am going to pass out again. It took several minutes to stop and then it would return as soon as I had to get up. It only stopped after an hour or so of getting IV fluids, I could walk again and my orthostatic symptoms improved. 

@whoami - these symptoms could easily be interpreted as anxiety or panic by an observer that does not understand dysautonomia and the mechanism behind it. And in your case it may be difficult to differentiate b/c you my have both. When you go to the ER make sure that they do not just take your BP and HR lying down. Even when in the ER after a seizure - lying down all is great but as soon as I stand up or go to the bathroom my BP and HR soars ( when I am in a flare ). So - they might think all is well with your vital signs b/c you were lying on a stretcher all day. 

[DizzyPopcorn]

1 minute ago, Pistol said:

@Scout - I experience these attacks as well, although not as often any longer. My most recent one was while the nurse was here to access my port on Friday. I was on the floor crawling to get to the bed ( my BP swings crazy like your does in fare as well ) and passed out. Afterwards, in bed, I am trembling, shaking like in a deep freeze all over, teeth shattering, cold hands and feet and -yes, anxiety over my symptoms and that I am going to pass out again. It took several minutes to stop and then it would return as soon as I had to get up. It only stopped after an hour or so of getting IV fluids, I could walk again and my orthostatic symptoms improved. 

@whoami - these symptoms could easily be interpreted as anxiety or panic by an observer that does not understand dysautonomia and the mechanism behind it. And in your case it may be difficult to differentiate b/c you my have both. When you go to the ER make sure that they do not just take your BP and HR lying down. Even when in the ER after a seizure - lying down all is great but as soon as I stand up or go to the bathroom my BP and HR soars ( when I am in a flare ). So - they might think all is well with your vital signs b/c you were lying on a stretcher all day. 

Thats very true, but by the end of the day im almost symptoms-less (including vitals) . I tried to show them my standings vital but they werent really impressed, still within "normal range". => you have anxiety stop monitoring yourself so much. Aaaaaaaaaaaaaah im going to punch a wall.i was laying on a stretcher for maybe top 30 minutes. After i went to through the triage i was sitting in a wheelchair in the waiting room for 5 hours. They took vitals every 2 hours.

 

My standing vitals are not really that high, thats the problem

 

[Pistol]

@whoami - I know that often when experiencing a panic attack your BP and HR will be high - so if there are NO changes I am not sure that that would necessarily rule out an autonomic event. I hope your appointment with the autonomic specialist will happen soon. In my case I was so relieved when I ws diagnosed by my specialist - it was validating to finally know what I have and that all of this is real. Hang in there!!!!!

[DizzyPopcorn]

16 minutes ago, Pistol said:

@whoami - I know that often when experiencing a panic attack your BP and HR will be high - so if there are NO changes I am not sure that that would necessarily rule out an autonomic event. I hope your appointment with the autonomic specialist will happen soon. In my case I was so relieved when I ws diagnosed by my specialist - it was validating to finally know what I have and that all of this is real. Hang in there!!!!!

Yes!! My birthday is soon, so the only gift i want this year is to get an appointment with my specialist. Do you think I'm being too demanding?! 🤣