When Is Pots Considered Serious?

[surfgirl14]

Hey guys. So my question is when are your pots symptoms considered serisous? when should you worry and not worry? Some symptoms that worry me the most are:

extreme nausea (cant barley eat or drink)

High heart rate (140's or above)

Pain (from headaches to abdominal pain... sometimes all over pain)

Gastro issues (problems swallowing,abdominal issues, diarrhea)

Extreme Fatigue/weakness

Visual disturbance (blackouts)

Ok with that said. At what point should those symptoms be considered serious.... When to go the to er? when to call the doc?

I feel like I never know when to be concerned, and if I am concerned is it just that I am freaking out to much? I know pots symptoms are supposably non life-threatning but at some point should you call your doctor or just let the symptoms pass?

Sorry this is getting so long. Thanks for reading. Hope everyone is doing well.

Hugs

[surfgirl14]

Oh also I have a centeral line -smart port- ... not sure if that puts me at higher risk with my symptoms.

[Guest Alex]

Hi Kayla,

I'm so sorry to hear you have to deal with all these problems.

I'd say that you're the only one who can make the decision about the severity of your symptoms.

For me it took over 20 trips to the ER, a very patient and understanding husband and a lot of reassurance from a bunch of doctors.

I still have times when I second guess myself, but I also have days when I keep telling myself that I can not live in constant fear.

Also, in all honesty, all they ever did for me in the ER was - monitor me, draw blood (which I hate), sometimes do an urine test, and eventually an X ray. A lot of times I had to wait several hours to be admitted, several more hours to be seen by a dr, and by that time most of my symptoms would be gone.

Again, it's a hard question you're asking, but maybe your dr can shed some light into this for you. If (s)he is understanding and willing to take your calls, you might want to try that.

All the best.

Alex

[martiz]

Hi there,

Caveat: my condition is not as bad as yours. I never go anymore. They don't know what to do for me so it is too much effort, too much expense. I probably wouldn't even get saline which would be the only reason I would want to go.

You have a port so that changes things.

It can get frightening but it makes me worse to go (having to wait hours, the anxiety of the doc I might get, the resistance, etc)

Marti

[ramakentesh]

I tend to agree. When i first got POTS i went to the ER a few times and got sent home with a pat on the back or some anti depressants. i thought to myself 'fine, well if I die its on your head.' - turns out despite spending many periods in the last 8 1/2 years feeling like i was going to die, I havent yet LOL.

the port does change things. And whether you haev a doc willing to send you for IV saline (which i no longer have).

I just dont think doctors get how uncomfortable this illness feels when its flaring up. Even if its not life threatening it feels like many swear words I can think of.

[issie]

I just dont think doctors get how uncomfortable this illness feels when its flaring up. Even if its not life threatening it feels like many swear words I can think of.

Unforntunately, it's not just doctors that don't understand - sometimes, it's our family and friends - if they only knew. So can relate!

Issie

[Chaos]

I agree it's awful when you have a flare in symptoms but especially because you have a port, if your symptoms have become this much worse, I think you really need to at least call your doctor. Are you running any type of fever?

It's always a balancing act, especially because we have so many symptoms all the time so it's hard to sort out. But with that central line, if you are having a really big increase in symptoms I'd be on the phone to my doc at the very least.

[goodnuff77]

With my port I was told the only time to really get nervous is when you have sign's of infection or when your port stops working. I was at the er was about 2 months ago. I only had a fever at night time. Also I use my port daily at home, I wasn't able to get fluids into the port or blood return. I found out I had a blood infection and a clot in my port. I'm now told that is the problem with using a port full time. So just watch for the sign's of infection.

[Clairefmartin]

I struggle with this because of my past PICC line causing all the DVTs/heart thrombus/Pulmonary Embolisms (12+), so I get VERY scared with chest pain. I have kind of learned what is the "norm", and if anything is out of whack I call all my doctors, and if I get at least 2 or 3 that say "go to the ER", then I go. And I can say, "my doctors told me to come," why, and I give the hospital their names. But my local ER knows me by now - how sad, so they usually give me fluids, make sure I'm not having another clot, and send me home.

In my opinion, you have to go with your gut. There is nothing wrong with going to the ER if you feel something is wrong, amd if you are ok and it's something a doctor needs to deal with in an office setting - you will have learned that and will know for next time.

In my opinion - times that are vital to get to ER or call 911: you hit your head (a lady with POTS recently died from a bleed out at home when she fainted - it's a BIG deal, even for non POTS people when a head injury occurs), any issues with a port or line (swelling, fever, flu like symptoms), or your HR and BP being out of their normal range (which is different for everyone). These are only my opinions, I am not a doctors and am only speaking from experience.

Best of luck - and I hope you find some answers!

Claire

[surfgirl14]

Thank you everyone. Yea my doctors are pretty good when it comes to the point where they want me to go to the ER. Usually at tht point they call ahead for me so when I get there I am not waiting for a long time. My port is acessed once a week and it is doing really good right now (minus the pain). Which they infusion oncology nurses say is ok. I have had good blood return and no problems getting fluids into my port. It is just really scary expecially when you think you should call your doctor and your mom is saying "ur jus overreacting, calm down". That gets annoying. Thanks for everyones replies.

[bunny]

The port does change things, but only slightly. Signs of infection (aches, fever, swelling) are something you should definitely call on. Otherwise, know your body's "normal", including the undesirable effects.

New symptoms or a change in symptoms is when I take notice.

[bellgirl]

Kayla,

Glad things are going well with your IV infusions and your port. Sorry that you are having lots of dysautonomia symptoms right now. I'll say a prayer that the doctors will make wise decisions regarding your care and that you get the treatment you need, when you need it, and that you get to feeling better. I'm here for you. Send me a personal message, if you want to talk

[surfgirl14]

Thanks Kim ill def do that if I need you. If i end up going to the hospital again i will def be making the 2hr trip to duke or be requested to be transfered there i will not deal with the docs down where I live again!

[bellgirl]

That's good...Duke is a wonderful Medical Center, and it's not because I am biased, because I worked there as a nurse. They genuinely are the state of the art, medically speaking, on top of the lastest and greatest...any teaching medical facility will be like that. They fly in patients from all over the nation. They are known for their success in diets (mostly for the obese), but great knowledge on nutrition, as well, and I used to help with patients with reimplantation of limbs that had to be reattached after traumatic injury. There were a lot of children with rare chronic illnesses there, too, so I know you will get the best of care there!! Let me know how it goes...