"it's Not Life Threatening!"

[jlmahon]

I was doing really well until a few days ago. My body decided to go haywire and act up in all ways possible (blood pressure drop when stand, small fiber neuropathy pain, etc). I passed out at PCP's office so he sent me to the urgent care center for IV Fluids and to get some labs. Today I'm resting due to exhaustion from the major dysautonomia flare...not to mention I can't do much without my blood pressure dropping. While I don't expect anyone to understand how I feel, I don't expect people (expecially close friends and mom) to judge me. My mother called today and said her legs hurt all the time but she still goes about her life. A while later, my friend called and said it's no big deal since it's not life threatening. Do they think I can magically feel better? So frustrating. Apparently, my quality of life isn't important and I should just force myself to do whatever even if I pass out?! I'm generally a happy, energetic person but sometimes people make me feel like dirt. I'm sure you all can understand.

[Angelika_23]

People can be really insensitive. While POTS isn't usually life threatening, it IS life altering. I am finding that most people don't understand that, probably because they can't SEE what is wrong. It is very hurtful when people say things like that, especially when they don't know what they are talking about.

Keep your chin up,

Angela

[firewatcher]

Oh I hear you! The other thing I hate is the phrase "no acute distress!" You know, what they put on your chart...Well, good grief, I DON"T WANT TO BE IN ACUTE DISTRESS!!!!! I want it fixed before I get there! It makes you want to be a nasty, catty witch later and tell them "well, it's not life threatening" the next time they whine about something. Ggggrrrrrrrrrrr

[tinkerbella]

I hear you loud and clear! I don't care what any one says, life really stinks! someones else gets a hangnail and their world falls apart. I'm sick and tired of being there for everyone else. It's like I've made everything up. I get more compassion from strangers than people I know. My doc told me to tell my family to tell their docs, no one will and i know they have symptoms of it. I'm worried about my kids and grandchildren as they are showing signs also and no one will tell the family docs. anyone have this going on also? Denial. I give up! i feel like i must be an embarrassment to everyone or they think it's not real.

[bjt22]

A few years back, I read quite a few articles describing a contraption that had been made that allowed doctors and other medical professionals to understand what living with congestive heart failure felt like. Apparently, there was a notable lack in their understanding or ability to relate to the impact it had on patients' lives. Ofcourse, many of the doctors interviewed for these articles tried to pass the blame onto their patients....they would say things like "this helps me understand because my patients don't know how to describe their symptoms". I can almost bet their patients did everything they could to describe their symptoms yet got the same blank stares we're used to getting from family, friends, medical professionals, etc.

To be fair, I suppose it is really difficult to appreciate the impact that cardiovascular impairment can have on daily life. I often have a hard time describing it. I fall back on pat phrases such as "I feel like something the cat drug in" or " I feel like I've been hit by a mack truck". Not very descriptive, I know.

[jump]

They just did a big study about how people who know they have terminal illnesses and people who survive major trauma or the death of a loved-one are, by in large, HAPPIER than people who live with chronic pain. In fact, chronic pain and chronic illness is one of the FEW things that can cause a generally up-beat person to become chronically unhappy.

I'll try to find the article tomorrow and post it here. It was in the NYT magazine a week or two ago.

[ramakentesh]

A good way for me to put it in perspective for people is to tell them that both acute hepatitis and glandular fever are about a 3 out of 10 compared to bad POTS which is 9 out of 10.

People think its benign and just uncomfortable. Tell them the science of it - that your brain is starved of 40-66% OF blood flow when you stand or sit up. That its almost identical in many ways to congestive heart failure. That around 25-35% of patients are unable to attend work or school. should make it clear

[Guest tearose]

hanna,

Everyone says what I would and I add...sometimes over the years, people who love me say the stupidest things!!! I have to remind myself that THEY forget every action I take is calibrated and planned and corrective measures are always available...they just don't get it because they see me/us managing NOT what it took to do the tasks we do!! They forget that we will need to replenish our energy after the wonderful task is completed! We have learned how to become resilient and creative and manage some quality of life in spite of our challenges. Others focus on what we are doing... only we know what we have had to comprimise and what we have lost.

I have had to nearly SCREAM to say that although I am a good cook, I had to LEARN to enjoy it because I could do nothing else! I was home, unable to work, and had to at least get some food on the table for my family. I did not want to "love" cooking, I "love" being a Administrator and working in my field. When a person suggests I cook more or write a cookbook I know they just have no clue to my real essence. I enjoy nurturing others but serving food was not my desired way to do this.

Try to forgive these people.

We may not die of POTS but some part of our personality did drastically get altered! Our personal essence is always on "life support".

WE understand.

tearose

[futurehope]

I was doing really well until a few days ago. My body decided to go haywire and act up in all ways possible (blood pressure drop when stand, small fiber neuropathy pain, etc). I passed out at PCP's office so he sent me to the urgent care center for IV Fluids and to get some labs. Today I'm resting due to exhaustion from the major dysautonomia flare...not to mention I can't do much without my blood pressure dropping. While I don't expect anyone to understand how I feel, I don't expect people (expecially close friends and mom) to judge me. My mother called today and said her legs hurt all the time but she still goes about her life. A while later, my friend called and said it's no big deal since it's not life threatening. Do they think I can magically feel better? So frustrating. Apparently, my quality of life isn't important and I should just force myself to do whatever even if I pass out?! I'm generally a happy, energetic person but sometimes people make me feel like dirt. I'm sure you all can understand.

Reality Check:

How does anybody know it's not life threatening? I mean, I don't walk around fearful that every day is my last, but, honestly my autonomic nervous system does not work properly, and at this point I do not believe the doctors know enough to "fix" it. So, how can they know whether or not we are at a greater risk? After all, are bodies' are not working properly. Normal people respond a certain way to provocation from bacteria and viruses: we may not be able to respond as well, or more likely, our ANS may really struggle with the infection and go haywire.

You know, like I said, I do not live in fear that any day may be my last or that an illness may kill me, but I do not think doctors know enough to state that we are not at a higher risk. Unless... somebody out there can show me where a malfunctioning ANS could be helpful during an infection? I'm not holding my breath.

That being said, I hope you get well soon and feel better quickly. I lose my patience with people who make comments that it is not life threatening. I mean, we're not obviously bleeding to death, nor are we walking around with supplemental oxygen, but please, we really don't know the compensatory mechanisms in place both by us, and by our bodies, to keep us functional. I had a need to state my opinion. I hope I didn't upset anybody.

[erikainorlando]

Good topic!!

Honestly...people can be soooooo stupid. We are all here for you!! I think it is the old saying "blame the victim" because they don't know what else to do. My personal favorite is when folks say "what do you think the illness is trying to tell you?" as if I have a lesson to learn from God because I have been a bad bad girl.

On one of my hospital stays a nurses's aide told me it was anxiety. I told her to shut up and when she knew exactly what I felt she could speak. (wasn't doing well enough to be polite...)

I stay away from those folks and these days I only really talk to my kids, mom, boyfriend and the very few freinds that don't discount me.

Erika

[tinkerbella]

i've had time to rethink what i said earlier today, " to me I consider it life threatening." my dad died of a heart attack and something else was wrong with his heart that he hid from our family. HE WAS POPPING NITRO ALL THE TIME, and the bb he was on made my MOST WONDERFUL DAD TURN SO irritable. i remember when i was started on my first bb i thought i was going to jump out of my skin. my dad's mom was 54 when she died of an enlarged heart. why? why? why? i ask the doctor as i was dx at 54 and at 55 was told if we don't stop your heart from working like this it will just enlarge and without an intervention you will die.

so, i take all of this very serious. a lot of damage has already been done as i've been treated like a anxious person in the past as my heart was beating out of control. i've been berated in er's by high an almighty non pots cardio doc telling me they were highly trained to see that i was a hyperventilater. i'm really mad tonight thinking about my life in review. i do live somewhere between congestive heart failure, ms, and lupus. my ana is so high but we still can't figure out what it is. lupus is what we keep checking for along with strange things like von willand brand disease as i'm a bleeder also. i'm tired of the roller coaster ride the recently i decided to go with the flow, make the best of it and hope we can change the medical community.

we all need to come up with a fact sheet that we carry in our bags with our med info explaining pots to these er docs, family, friends all in case of an accident or emergency. do we already have one here? if not let us begin and educate and not be humiliated any more!

we need to take control over the things we can and help prevents ourselves and others from what we have been through.

I'm starting to fall asleep so I'll stop now and have to edit later.

my cup of energy has run out of energy for the day.

BLESSINGS to all~

[vemee]

I agree that not enough is known about pots to know the full effects of the condition. Like Futurehope I don't walk around each day fearing that it will be my last but I have to wonder at what damage is being done to my organs because of low perfusion. There was a thread on here recently about adrenal insufficiency, could that be a result of autonomic dysfunction instead of just a concurrent condition? What will old age be like for those of us that have had the disease most of our lives? Too many doctors just look at this as a case of tachycardia and do not even consider systemic involvement.

[rymac]

They just did a big study about how people who know they have terminal illnesses and people who survive major trauma or the death of a loved-one are, by in large, HAPPIER than people who live with chronic pain. In fact, chronic pain and chronic illness is one of the FEW things that can cause a generally up-beat person to become chronically unhappy.

I'll try to find the article tomorrow and post it here. It was in the NYT magazine a week or two ago.

In my 15+ years of trying to get diagnosed I would have been OK with a terminal illness just to know what was wrong with me. I don't really remember what it is like to be healthy. It's like I'm aging at an accelerated rate. Chronic Illness is something that just seems to be never ending. The phrase I have read is "lifestyle threatening." If some one had to change their diet to mine and stop doing some of things I can't do they would not be happy. I had a counselor one time ask me to try and put a positive spin on my illness. No matter how hard I tried I couldn't do it.

I read a pretty good book called "Just Fine unmasking concealed chronic illness and pain"

[futurehope]

There was a thread on here recently about adrenal insufficiency, could that be a result of autonomic dysfunction instead of just a concurrent condition?

I absolutely think so. I think the adrenal malfunctioning could definitely be a result of ANS malfunction, though, not always. And while we're on the subject, who knows what other system is radically altered because our ANS malfunctions? There is primary malfunctioning and secondary malfunctioning. For example, our heat regulation may be off. That is primary. But then other compensatory mechanisms come into play to counteract the poor heat regulation, like increased heartrate. So then we have secondary malunctioning caused by compensatory mechanisms.

Truth be told, my endocrinologist has said some malfunctioning may be caused by POTS, an some malfunctioning may be the result of POTS. We just don't know.

[firewatcher]

"And while we're on the subject, who knows what other system is radically altered because our ANS malfunctions? There is primary malfunctioning and secondary malfunctioning. For example, our heat regulation may be off. That is primary. But then other compensatory mechanisms come into play to counteract the poor heat regulation, like increased heartrate. So then we have secondary malunctioning caused by compensatory mechanisms."--futurehope

I am beginning to wonder this myself! I know that having migraines (a "mild" ANS dysfunction ) predisposes me to other VERY life threatening conditions (like a stroke.)

If you faint in the middle of a crosswalk and a bus hits you, the bus actually killed you, but it was the faint that precipitated the event.

If POTS is proven to be autoimmune, then once you have one autoimmune condition you are vulnerable to another...that cascade could be life threatening!

I could go on...

However, POTS itself is a collection of symptoms whose primary cause is debated, misunderstood or just not known yet, so whatever the "cause"(and there could be several) that is what would be the primary disorder, which may or may not be life threatening. The body is amazingly resilient and can compensate for extremes in conditions without fatalities (look at the people living in low O2, high altitude environments) but every condition is like a pebble thrown into still water: the ripples outward touch things you would not expect. If you were to give my ANS reflexes suddenly to my Father-in-law, he'd be dead the first morning of a heart attack, but my body has compensated after years and a 60+ bpm increase in HR on rising just makes me breathless and I lose vision for a moment.

I am NOT trying to be alarmist or make anyone worry, but those ripples are questions that do need to be investigated. Unfortunately there are many and until the "cause" is known for POTS, we just won't know.

[tinkerbella]

please forgive me, as I realize many people can't get the help they need and this make me feel very sad. I also see and started treating myself at first with chocolate for the high BP and my doc went along with me saying I could use licorice would be another treatment. I used cinnamon also it did help, but I needed more help then this regiment could provide and the chocolate also was thought to make me more tachy. I did these things because I was allergic to the meds bb and hated how I felt in general.

What I was afraid of, is I see a younger population of people who refuse to get medical attention for anything these days and they wait until it's too late. Not for POTS for anything even an ear infection. I know I have been tested for congested heart failure so many times and the latest this week. I do believe that is what my dad hid from the family and it make so soooooo angry that he died doing what he loved the most in the world of a sudden heart attack still young. I miss him so very much and I have no access to that important medical information as he hated to go to the doctor.

I sincerely hope each and everyone of you the best of luck in your search for a doctor and I'll share anything I can here.

Remember we are all just hanging by a thread my doctor told me when his young 29 year old lab tech at he office who I loved dearly, died last year in a tragic car accident. We all need to try and enjoy what we can in each and every day the best we can.

May we all enjoy what we can this weekend.

This weekend I honor my dad who fought for this country. I have no way of getting to the cemetery to pay a visit, although he lives in my heart always I'm very sad this weekend thinking of him.

Blessings BellaMia~

[pat57]

I have decided those people don't deserve to know "how I am". Those that show they don't care just get an "I'm fine". After a few instances of that

they know I don't like them enough to use my time and talk to them. I consider that fair. They are a waste of my time.

[yogini]

I think even the people who we think understand don't, unless they are chronically ill themselves. I have to admit that before I got POTS, I didn't really understand chronic illness at all. I had a couple of friends in high school that were chronically ill, and I wondered why they didn't get better already and make it back to class. Looking back, I feel awful about thinking those thoughts. But at least I knew enough not to say anything to them about it. Some people don't - they are just rude!!

[Lgamez3]

I get tired of hearing "when are you going back to work? The economy is so bad, so many people are getting laid off and looking for jobs......what is your work saying??" and also things like "you are trying your 6th medicine? why cant they find something to make it ok so you can go back to work? how many medicines do they have?"

Seriously, people don't understand. I have always been a very busy person. I usually work 2 jobs and my main job work 50+ hours a week. that along with all the kids activities keeps me going....well, used to. I really really want to go back to work and be "normal" again! It is so frustrating that they don't understand.

[Elegiamore]

As for life threatening, I'd like for some doctor to explain why my problems with H-POts - having blood pressure of 220/135 sitting and 90/60 standing - is not life threatening.

My neurologist placed me in four different hospitals with different inadequate cardiologists because he said that a 90 degree change in BP from sitting and standing was extremely dangerous and life threatening. But each doctor kicked me out of the hospital and told me to see a shrink. Go figure....

A month ago a good friend with lower bp that above had two major strokes and almost died. He is paralyzed on his left side. Is that dangerous enough?

And wouldn't you think it is dangerous to have a syncope on I-75 interstate while in the middle lane of traffic? Nobody even believed me that it happened. I don't drive interstates by myself any longer.

I could go on and on - remember that a majority of doctors speak about POTS from ignorance, but I find that young, new doctors are familiar with the condition, but not treatment and the various types. All I'm ever told is to increase salt and water, even with high blood pressure, wear compression hose, which don't help, and increase exercise, which makes me worse.

Believe in yourself; you know the truth now and in the end, we are all responsible for our health, not some doctor.

This site is a blessing that will help us all become educated and live longer and possibly more functional lifes.

God Bless dinet.org.

Best wishes always,

Elegia

[sandymbme]

I can totally relate to this thread. For one, my pots is slowly taking over my whole life. I am on extended leave from work and all anyone can say is "You'll be better soon." Well what if I won't? There is just as much chance that I will continue to spiral out of control! I had to go get a handicapped parking pass and I am only 34! Everyone jokes about the primo parking without understanding how humiliating it is to need it. Empty platitudes are maddening!

As for life threatening, my pots nearly cost me my life just a month and a half ago. A really uninformed doc thought that since I could tolerate fluids orally it was fine to take me off the IV fluids. My BP tanked bigtime and my mom (who thank the dear lord is a nurse!) could not get a nurse to respond. When she decided to **** with the consequences and to intervene herself my BP had FLATLINED. (She got 60/0) She said had she not intervened I would have died. And when the nurse finally appeared, she yelled at my mom for touching hospital equipment. My dehydration from GI issues plus my pots symptoms nearly killed me. So complications from pots can absolutely be leathal. I take it waaaaay more seriously than I used to!

And I also read "Just Fine" and found it extremely insightful and helpful! I highly reccomend it!

[tinkerbella]

FUNNY THIS POST SHOULD POP UP AGAIN TODAY, as i just came home from my cardio after 4 days in the hospital when we were like passing ships and never saw each other. we made a plan when a doc does't get him by a page then i'm to page him till i get him. he was furious and went to checK his call log!

then we talked that i have no choice about going on florinef or he said we'd be looking at a HEART TRANSPLANT, this is HOW SERIOUS IT IS FOR PEOPLE LIKE ME WHO CAN'T TOLERATE THE MEDS. I FINALLY GAVE IN AND SAID GIVE IT TOO ME ONCE AGAIN.

BLESSINGS TO ALL~

BELLAMIA~

[marni4u]

I can totally relate to this thread. For one, my pots is slowly taking over my whole life. I am on extended leave from work and all anyone can say is "You'll be better soon." Well what if I won't? There is just as much chance that I will continue to spiral out of control! I had to go get a handicapped parking pass and I am only 34! Everyone jokes about the primo parking without understanding how humiliating it is to need it. Empty platitudes are maddening!

As for life threatening, my pots nearly cost me my life just a month and a half ago. A really uninformed doc thought that since I could tolerate fluids orally it was fine to take me off the IV fluids. My BP tanked bigtime and my mom (who thank the dear lord is a nurse!) could not get a nurse to respond. When she decided to **** with the consequences and to intervene herself my BP had FLATLINED. (She got 60/0) She said had she not intervened I would have died. And when the nurse finally appeared, she yelled at my mom for touching hospital equipment. My dehydration from GI issues plus my pots symptoms nearly killed me. So complications from pots can absolutely be leathal. I take it waaaaay more seriously than I used to!

And I also read "Just Fine" and found it extremely insightful and helpful! I highly reccomend it!

OMG Sandyshell---How horrible--lucky for you your mom was present!! Were you in the hospital for a pots related episode at the time this happened or, was it an unrelated issue? I'm learning slowly that some medical professionals are useless.

[tinkerbella]

you know it's hard as i live alone, but everyone with this horrible condition should have someone educated about this illness incase we can't speak for ourselves. i hate to say it, but i knew more than the nurses, don't give me this med at this time as it wipes out all the others, i can't stop the clonidine i'll get rebound tachy the next day, you know they are giving you fluids at the wrong rate, you need postural signs 5 mins apart, you don't give me double doses of mestinon because the computer is telling you to, noon meds at 3:30, it was a nightmare then they seriously dehydrated me, by lack of knowledge of pots.

dehyration kills normal people, but really can take us out quickly. i'm still trying to recover tonight at home from the whole ordeal.

[futurehope]

BellaMia

Be blessed today!