How Do You Accept You Have Pots?

[julieph85]

I'm one of those chronic denialers. I say, what's pots? I don't really know and neither do doctors. It's not a disease its a syndrome. What if i don't have it? What if I have something the doctors are missing that can be cured? What if pots is just an anxiety disorder? What if I do the IVIG they are pushing on me and I get sicker or I die? How do you all answer these questions? I really believe in my heart I don't have pots because I tell myself it is like every other "howky" disease out there that chronic anxiety sufferers believe they have. You know, like chronic Lyme and CFS. It's not real and it's just a mental problem. It will go away eventually. Those are things I tell myself every day. If I pray enough and I read enough on the Internet I can make it go away. I can find out what I really have and cure it, so I can be the healthy 20 something I was 4 years ago. Yet all the doctors say I have this thing called pots. This thing they don't understand but want me to try 10 different off label drugs to make go away. How do you accept it friends? How do you embrace the illness to get better? Is this even real? How you can be so healthy one minute and so sick the next feels impossible. We are all so isolated in this illness with a weird name that no one understands. It's lonely and it's scary.

[davecom]

I've been thinking about it a lot in those terms recently too. Four days from now will be the anniversary of when I left for California and a few months later my life took a dramatic nose dive. I can't imagine going through the last few years of my 20s sick like this, when just a year ago I was in my prime. I am sometimes (maybe even often) convinced that I will eventually, with the help of the right doctor, stumble on my underlying cause, get it corrected, and move on with my life. Yet most tests have come back negative, except autonomic dysfunction tests.

You're absolutely right - doctors really don't know what they're doing with this. The ultimate symptom - one's heart rate going up when standing - can be caused by such a wide range of conditions that I think of "POTS" as just a symptom. Even the mainstream POTS researchers admit that the disease itself with no underlying condition is at a minimum 4 different diseases (Hyper, MCAS, NET transporter, etc...).

Yet I know I do have something. I feel the pains, and the heart rate certainly can't be in my head. I wear a little pulse oxometer every 2 hours when I walk and I see the heart rate climb and go back down no matter what I'm thinking of or how I'm feeling when I stand up. As far as the misdiagnoses of anxiety go that some get - as a couple of my doctors put it - no matter how anxious you are, you can't make your heart rate instantly double upon standing up...

So... we must accept we have this... well at least the symptoms. We don't need to accept the generalized disease, since... what disease? Which one of the many that "POTS" can mean?

In some ways perhaps acceptance would be easier. The doctors tell us our condition is non-life threatening and that we have a >50% chance of recovery in 2-5 years.

PS My thoughts are a bit confused by the fact that I do have congenital heart conditions and a blocked right jugular vein. Yet the doctors say these are unrelated...

[Joann]

Julieph85

I understand, I don't feel like I have POTs either. If I do, I know I have something else also. Even for those that have POTS or dysautonomia, that is not an answer, I think we all deserve to find what kind or the cause.

I too refuse to be pushed under the rug and told to just try this medicine, when they don't even know what is really wrong with me. I have been told my blood volume is pretty close to normal and yet they want to do things for low blood volume. Why? I have high bp surges and yet they want me to do things that those with low bp would do. Why? When I do question them, I often get no answer. One that really annoyed me was " You have to work with us, we need to rule things out" I listened to them knowing they were wrong, tried going off my current medication and I ended up crashed in bed. So I learned from that, the doctors don't know best always, it is our body and we know what we are feeling. They can suggest we try or do things, but we need to decide if they are right.

Right now, I am having intense pain in my upper abdomen, below my sternum and in my back. I cannot drive, or bend or pretty much do anything but sit, or walk and they are trying to tell me I have POTS. POTS would not cause the extreme pain and pressure in these spots. I know there is something wrong in this area and I am determined to find someone to figure this out.

Sorry, I am ranting, but today was a tough day and I am so frustrated with not being listened too by so many doctors. The nurses and technicians tell me to keep looking, but most doctors don't seem to care or understand how bad it really is.

I was told by a nurse recently that I was too nice and that I also describe it too calmly. Basically she told me, don't worry about them thinking you are crazy, you are your advocate and tell them how really bad it is and insist on being listened too.

I will let you know if it works, I just sent a long email to a doctor at CC. Before I would have been afraid that I sounded panicky or crazy, but this time, I described it with symptoms but also how it has exactly limited my life.

[looneymom]

I hate POTS. It is so unpredictable and steels the life of the patient and caregiver. I am not in denial. It's just so stinking unfair to have to watch a loved one go through this. My heart goes out to each and everyone of you that has this diagnosis.

Now for a more positive note. I really do believe there is a cure. This is what motivates me to ask questions and keep researching. Thankfully I have a cardiologist that calls weekly right now. Finding a doctor to work with you is half the battle. Our goal is to get my son back to normal as possible, but we're not there yet. The question to be answered is "Why can't his body get back up and function like it did before he had the flu?" The million dollar question. Same medicines and supplements as before he got sick, even kept going to physical therapy. Pain and tremors are worse. So what gives?

I think the best thing a POTS patient can do is stand up for themselves and have someone come with them when they go to doctors visits. Foggy brains don't help and be sure to write all questions down before you go. Doctors are not perfect but they did take an oath to help sick people. Doctors must be willing to run test to rule out underlying causes of this strange syndrome. My advice is don't stay in denial, it just makes it worse and harder to accept. Stand up for yourself, this is not a psychological illness.

[Green48]

Julieph85,

I seek the same answers as you.

[Lemons2lemonade]

This is how i view it and it helps me:

The doctors have done all they can for me, and every test that would indicate something serious has come up negative. Sometimes in life there is no cure for what you have and you just have to accept it. For me, that means recognizing that everyone dies at some point and if this is my time then so be it. Most likely, though, i will not die from this condition--and i have to tell myself that. Every night before i go to sleep it feels like i am going to die so this is a common experience for me. To be honest, sometimes i kind of look forward to it because living with pots can be pretty miserable at times. They do not know what causes it, but there is plenty of literature stating that people do not die from it acutely per se.

Additionally, i recognized that worrying about it is not only a product of my adrenal glands overreacting that is causing those thoughts, but that engaging in them in a panic like manner only makes the feelings worse. I think it helps to recognize too that pots isn't just heart rate. Its everything. And many people on this forum share your feelings. Darn adrenal glands

[blueskies]

Julie,

I feel like that too at times -- how could I have such a weird thing as pots? Do I have it? Are the docs wrong?

Joanne,

I've been told I'm too nice too. LOL. That I need to speak up to my docs. My pulminologist/allergist told me this. I do speak up now but I'm so muddled by pots after 10 years of dealing it I'm not sure I'm making a whole lot of sense. Except when I'm seeing my psychiatrist with whom I feel calm (mostly) and can speak rationally about this stuff.

Lemons2lemonade,

Yeah, anxiety caused by pots causes greater anxiety for me. It feels like I'm always worrying about what is happening and also the 'what ifs.' I think the 10 years since I've been diagnosed has left me feeling very depressed as well.

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[Dizzysillyak]

You seem to misunderstand what cfs is. It's been out of the psych disorder box for decades. It is an umbrella

term however so those dx with this really need to look further for themselves. Doctors who dx this

are taking the lazy route. Pots the syndrome is an umbrella term too. Pots dx via ttt is real tho.

From what I've seen most chronic illnesses are umbrella terms.

Granted the info on cfs or any chronic illness can be confusing but there's a thread on pheonix rising that can explain this.

It's under the general treatment section and it's posted by jarod. Sorry but it's too early for me to remember

the name. This list can apply to any chronic illness tho.

Many people have reversed their chronic illnesses via diet and supplements but not all damage can be

reversed. No one knows unless they try tho. An integrative doctor can explain this. Dr teri wahls

does a good job here.

Hth .. D

[Chaos]

How do you accept that you have RA? How did you have it one day but not the day before (or the month before, or the year before)? Yes, you may have a test result that says you have a rheumatoid factor and elevated ANA or SED rate. So with POTS perhaps you have a positive TTT and positive Qsart and positive autonomic reflex screening tests and/or positive catecholamine tests. How is that less of a positive diagnostic set than what you have to explain why you have RA?

Because you can't "see" POTS doesn't make it less "real" than the RA. I guess with RA you have visible symptoms so that makes it somewhat easier to accept. But a lot of us had pretty visible symptoms when we first became ill as well; that's why our family members knew we were so sick. However, I would caution you that it's this same line of thinking (can't see it so it's not real) that made people with MS, Parkinsons and other neurological diseases historically be diagnosed as "psych" or "mental" or "all in their heads" until the science came along to prove that it wasn't. And frankly even "mental" diseases are all being shown to have physical causes these days (schizophrenia, depression, etc) so I think you need to be pretty careful about how you dismiss things as "just anxiety" or "all in their heads" or "howky" diseases. Pretty much every disease that has been attributed to patients "making it up" or "being neurotic" have all been shown eventually to have a physiological basis.

In the FWIW category... as stated above, there are LOTS of biomarkers for CFS as a disease as well and it is no longer in the "it's all in their heads" category. It's extremely unfortunate that uneducated medical providers are unaware of that fact and continue to propagate the idea that it's a psych diagnosis. The name of the disease itself is extremely derogatory and in no way accounts for the extensive damage done to the nervous, endocrine, immune and GI systems done by the disease. A recent study by Vanderbilt concluded that when they compared POTS patients with their POTS/CFS patients... they all met CFS criteria (except 1)....so in fact... this may all be part of one continuum- at least in it's more severe forms. (If you haven't done any research into the disease you may want to. You may be surprised/shocked by what you find out.)

It's much easier to accept that which we think we understand, but the reality is, I don't think very much of ANY disease process is truly understood. (For that matter, they still can't even explain precisely what makes a woman go into labor!) Maybe with enough years and experiences you just kind of get resigned to the fact that things happen and you probably will never know or understand why. Doesn't mean you quit trying or looking for answers, but the reality is that I still have to get thru today the best way I can and in order to do that, I have to deal with whatever my body is doing....whether I want to call it POTS or ME or CFS or CVID or NMH or EDS or MCAS or I'm-just-weird-disease or whatever. That's just the reality of my life whether I like it or not so I have no choice as to whether I accept it or not. I just get up and do what I can to go on with life in the best way I can. That's my version of "acceptance". The other choice isn't acceptable to me.

[Hope]

"In the FWIW category... as stated above, there are LOTS of biomarkers for CFS as a disease as well and it is no longer in the "it's all in their heads" category. It's extremely unfortunate that uneducated medical providers are unaware of that fact and continue to propagate the idea that it's a psych diagnosis. The name of the disease itself is extremely derogatory and in no way accounts for the extensive damage done to the nervous, endocrine, immune and GI systems done by the disease. A recent study by Vanderbilt concluded that when they compared POTS patients with their POTS/CFS patients... they all met CFS criteria (except 1)....so in fact... this may all be part of one continuum- at least in it's more severe forms. (If you haven't done any research into the disease you may want to. You may be surprised/shocked by what you find out.) "

Thank you Chaos! I'm a potsy/CFSer and there's nothing I hate to hear more than it's anxiety! I'm so thankful to have a good team of docs that seem to know the difference!

[HopeSprings]

Yes, thanks Chaos. Was too brain fogged to take this on and you said it so well. CFS is real... I don't know what it is, I don't even know for sure if I have it - but way too many people are exhibiting the same set of symptoms (including POTS) for it not to be something. It's the one illness that is a match for all my symptoms (including the POTS). I think they're onto something. Julie, this is really hard to accept and I share your frustration. None of this makes sense and that's the hardest part I think.

[blueskies]

A doctor, unable to find a cause for an illness may well say 'it's all in your head.' This assumption of your illness being 'all in your head,' relies completely on the idea that medicine knows all -- has all the answers -- yet that very same doctor when asked if this is true will say no!

Medicine is nowhere near having all the answers and everyone knows this. 'all in your head' is not an acceptable diagnosis is my opinion.

I'm feeling stronger today and more clear headed. I just hate it when I swing back to second guessing.

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