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 ***.

On 5/31/2018 at 1:58 PM, bombsh3ll said:

I have pretty much all the symptoms you describe, sudden onset here as well. I too feel like I am dying on an almost daily basis, but I'm still here after nearly 4 years. Things that gave me temporary relief have been licorice root capsules and diazepam. 

I am so glad you have good doctors. It took nearly 3 years for me to get a formal diagnosis of POTS, and I still have no treatment or specialist care (I live in Scotland, UK).

I hope you manage to find something that makes life more bearable soon. 

B x

 

 

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 

57 minutes ago, Pistol said:

@Brokenlittleteapot All I can tell you is that indeed it is true - we DO NOT DIE from these swings, but I know it sure feels like it! With the low BP I have noticed that the worst that can happen is we pass out if it is sudden or we are tired if it is slow and lasts. Well - more than that - fatigued, weak, confused, scared, …. With me I personally prefer to pass out because it is like a RESET button - when I come to I often feel better ( but I am also lying down, so that may be helpful. I guess if we do not voluntarily lie down our bodies will make us …? ) --- High BP is a little trickier for me because it does not so easily go away with lying down. And the symptoms ( CP, Headache, anxiety, excitement, tremors, coldness and so on and on and on … ) last a lot longer. And it is more difficult to get down. -- I know what it is like to have it while you are sleeping, depending on the type of sleep I had I can usually predict exactly what happened with my BP during the night. - I guess what I am trying to say is that these swings are common in dysautonomia patients and - again - they do not kill us. They just make our lives miserable.  But we just have to keep on trucking!!! 

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

4 hours ago, Pistol said:

@Brokenlittleteapot I was diagnosed with NCS ( neurocardiogenic syncope ) prior to my POTS diagnosis. On my first TTT they gave me nitroglycerin to mimic the effects of prolonged standing and my HR rose, then plummeted and I passed out. At that time ( back in 2009, mind you ) I was told that I have " the common faint ". This was from an experienced and distinguished cardiologist at a major hospital in my state. It was much later, from a world - renowned autonomic specialist - that I was properly diagnosed with hyper-adrenergic POTS. 

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

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

6 minutes ago, KiminOrlando said:

Yes, I did. I was told when you black out on the TTT you also have Neurocardiogenic Syncope. Fun, fun, fun.... 

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

2 hours ago, WinterSown said:

Of course not, I'm just thrilled for you to have gotten into care so quickly. Fortunately, there are more people getting rapid care like you everyday. It's something all the .orgs have worked towards and seeing it start to happen is great. More doctors are learning how to help. Who is Dr 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

5 hours ago, Pistol said:

I always get the chest pain accompanied by pain up into the neck as well as palpitations. Had everything on the face of the earth done to check - all is well anatomically. Yet HR and BP keep playing with each other. You know what that is called? DYSAUTONOMIA! All of your symptoms - along with the negative tests - seem to point that way. The only thing that stumps me is the IST diagnosis. That oftn is used as a diagnosis when they do not know anything else but I have not heard that being used in addition to dysautonomia. 

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.

3 hours ago, WinterSown said:

You got a diagnosis in two months? Some of us waited years and don't have nationally accredited cardiologists telling us we have fantastic hearts. 

Now you start to get better. Your doctors will set you up with drugs, exercise, nutrition, cognitive therapy, etc. It can seem difficult at first to learn how to manage your life again but you will do it, slowly but surely, and you will again be able to do many of the things you did before you fell ill.

 

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.