Soothing words for what terrifies you

[avais1]

Hi all,

I am catching up on the forum, and have read many posts lately about POTS causing arrythmias, people dying, etc. I wanted to add in my two cents, but on a fresh thread designated to this topic. For those of you who are already familiar with all of this, feel free to skip this post.

First, and foremost, PLEASE STOP SCARING YOURSELVES!

I, too, am a healthcare professional, but I will not identify which one (nurse, doctor, researcher, PhD, etc.) as I WILL NOT give out any medical advice. We should all be discussing our care plans with our own trusted medical team, and for those of you who do not have one, I urge you to find one.

I will tell you that people (and this includes "normal" people) have what is called "arrythmias" all of the time. Some people can notice the slightest change in heart rate, others don't notice at all. There are many different types of arrythmia, and I can tell you this (THE ARRYTHMIAS THAT ARE PRODUCED IN CONJUNCTION WITH THE POSTURAL ORTHOSTATIC TACHYCARDIA SYNDROME, PROVIDED THERE IS NOT AN UNDERLYING HEART OR OTHER DYNAMIC CONDITION, ARE GENERALLY BENIGN). That means they are NOT LIFE THREATENING.

The physicians are not trying to "hide" anything from you. They are trying to get you to STOP SCARING THE **** OUT OF YOURSELF for unneccesary reasons.

For those of you who keep scouring the internet, reading stories about some person who died from a heart arrythmia:

Do people die from it? Yes.

Does it mean you will? No.

Do not tie yourself up into a ball of anxiety, measuring every heartbeat, breath, etc. That is what physicians try to avoid having you do. It greatly affects your quality of life, and it adds additional stress, which is not good for your heart .

Take a deep breath! Or a shallow one ! As long as you are still here and breathing, that is what matters! Stop scaring yourselves. The mind can be a much bigger concern than you heart.

Speaking of the heart, it is an amazing muscle. You would be surprised at how much it can take. If you can do some research WITHOUT SCARING YOURSELF, I highly recommend it. Knowledge can be wonderful, IF USED IN THE RIGHT WAY. Write down questions, your fears, and take them to the physician you trust, and discuss them. I guarantee you that any good physician will want to listen to you, and will be open and honest (I know finding a good one is hard, but they ARE out there).

Lastly, finding a counselor who is trained in helping people with chronic illness can be a great help. They are trained in helping people deal with the anxiety and depression that goes hand in hand with a chronic illness.

I hope this message has helped those of you who have needed it. You are not alone, and you do have options.

[Laura]

Well said Avais!! Thank-you. Laura.

[MomtoGiuliana]

Thank you avais for your supportive and hopeful message. You are so right. We are here to support each other, not give medical ADVICE, which cannot be provided appropriately over the internet, regardless of expertise. Sometimes in a forum like this, the line between support and medical advice can be a bit grey. Good to keep reminding ourselves what the purpose of this forum is and that we need to talk to our doctors/health care practitioners, ultimately about our individual circumstances and concerns.

Thanks avais.

Katherine

[RunnerGirl]

Just joining the "Way to go, Avais," chorus. Well said, well done!

I even posted a link to your message in another thread. It's too good to miss by anyone troubled (as I know I was for a good long while) by PACs, PVCs, and other heartbeat irregularities.

Yours truly (and happily in normal sinus rhythm at the moment!),

RunnerGirl

[steph37822]

oops

[MightyMouse]

Staying focused in life on things other than one's illness is important. Staying calm (even in an emergency) is a wise way to approach life.

Avias, I think it's wonderful that what ever health community you work in has your base of knowledge in autonomic issues to help them in better serving patients. There are too few medical professionals with that type of understanding. Quite a number of our members do not have a "trusted" medical team. They may have socialized health care where they've not the slightest choice in their care providers. For example, our member Ernie has had a heck of a time getting even "adequate" care in Canada. Sometimes the medical community is very quick to dismiss symptoms as either psychogenic in nature, and/or be quick to assume that symptoms are related to an autonomic problem when they're not.

I don't think this is generalization about "bad care" per se, rather it's a problem with physicians generally having a lack of training in our spectrum of disorders. I think this disconnect between physician and patient ends up adding to the stressors that tend to build to feeling scared, or frightened patient--the unknown tends to make humans respond that way. Additionally, I would guess that more than half (probably more) of our members had at least one physician dismiss their symptoms in totality as just stress or depression (I know, I know, that's a whole 'nother kettle of fish-- depression and chronic illness often walk hand in hand), and/or blame that patient for the symptoms. In response, many patients end up "over analyzing" many things in order to try to make sense of their own body.

Most of us here have health problems that are frustrating, exhausting, sometimes painful, poorly understood and/or dismissed by many in the health care community--which doesn't make it easy for those with a real illness to stay calm and centered. I completely agree that for most of us, the arrythmias we experience are nonfatal, even if disconcerting.

It is important to keep in mind what is "normal" for you--if chest pain is normal for you and has been fully investigated and determined to not be dangerous, then all is probably fine. However, if you experience chest pain that is different, or new, that is something to address with your physician. Having an autonomic problem doesn't make one immune to things like heart disease, or other serious ailments. If something is clearly outside "your normal", get help.

Well, I guess I've come back from Chicago with a heck of a rant...sorry for not being more concise with my ramblings.

Nina

[Miriam Poorman-Knox]

Thank you..You have made this much clearer...Miriam

[calypso]

Well said, Avais. We all have to keep the research in perspective. I am guilty of jumping to conclusions when I read new research, then after a few days I tend to be able to put it all into perspective. The older I get and the more I learn, the more I realize we need to better understand research caveats and look deeper into the power of the mind as well.

Amy

[DancingLight]

Amy,

Good to see your name pop up! I've missed seeing you around as much...are you okay???

Avais,

Thanks for posting this. Sometimes I freak out about stuff, and sometimes I think I've gotten almost too laid back about things and attribute EVERYTHING to POTS! So, it is always a delicate balance. But, I do know that I have to work very, very hard at not succumbing to fear and worry when something new or different comes along.

You are right too about the heart...it is an amazing muscle! Sometime I get so mad

at my body and other days I think...man, this little heart sure works hard to keep you conscious and alive! Sometimes it amazes me that it keeps fighting so hard and I thank it! Silly, I know, but my poor body has been through so much stress, especially with surgery, and it keeps plugging along!

Thanks for your post...

Emily

[Guest Julia59]

Avais,

What a nice post! I think you helped ease a lot of fears. Arrithmia's are a scarey and confusing thing. After all, our hearts keep us alive.

And yes, I also tend to blame some things on POTS, but there is always this little voice inside me saying----OTHER UNRELATED HEALTH ISSUES CAN HAPPEN.

This is why I have an endocrinologist, a PCP and I also saw a cardiologist who did a cardiac stress echo. I wanted to make sure my chest pains weren't something else. At one time Dr. Grubb's assistant told me my upper back and neck pain was the "coat hanger phenomenon". which is common in POTS patients.

On my next visit with Dr. Grubb, I told him I wanted another MRI----and I opened up a can of worms that i'm still dealing with. But had I not ask for the MRI---I would have not known how serious the cervical spinal cord compression was---and then have it corrected with surgery.

I have talked with a lot of people who have various forms of dysautonomia over the last five years----and I would often ask them if a certain health issue they had could be something not related to their dysautonomia.

I get so wrapped up in all my other health issues I forget the other important things like getting my yearly PAP smears, and Mammograhms. I just think some of us get weary of going to the Doctor due to the dismissal from so many Docs of our very real symptoms. WE can't let it lick us---we have to take care of our whole body----- I think everyone knows that----but there are times we can get off track because we are trying to keep a very misunderstood chronic illness in check---and that is not an easy feat.

Take Care everyone,

Julie :0)