Doctors: POTS is not a thing

I’m pondering this week why it is that doctors mostly seem to disregard POTS and any symptoms of POTS. Why is this such a battle?

My PCP sent me to the ER a few months ago because I had more bizarre symptoms than usual: worse chest pain, increased dizziness/confusion, and sudden all-over pain except for my hands and feet, which were numb and occasionally blue. That visit was harrowing even at the time. The doctor was, simply, a bitch. She didn’t let me finish a single sentence and when I couldn’t produce a photo of my blue hands she rolled her eyes and just walked out of the room. Nobody asked for a health history or med list. Not surprisingly, nothing helpful happened and I went back home feeling exactly the way I did when I went there.

Well, it’s not the first or even 10th time something similar has happened, so I was pissed off about it but resigned. UNTIL. I started getting bills my insurance would not pay because the ER said I went there for a non emergency. In what universe are those symptoms a non emergency? I have bizarre symptoms on a daily basis and would not bother wasting my time unless I was seriously concerned. Even just common sense would dictate an EKG and orthostatic vital signs at a minimum for those symptoms. But on top of that I spent years as an ER nurse and can state with some assurance that those symptoms would warrant cardiac enzymes and at least the suggestion of a neuro workup of some kind. Confusion and numb limbs are kind of scary.

I found out not too long after that that I had serotonin toxicity, if not serotonin syndrome, and that is a Bad Thing that really can kill you.

This situation has pissed off my PCP and she is writing a letter to my insurance company, so we’ll see what happens there. At least I have SOME doctors in my corner!

But why do so many of them roll their eyes and get so hostile? I have theories. The main one is that particularly in an emergency room, if they can’t easily identify a possible cause of symptoms that they can’t see, it’s too much of a hassle and much easier to decide you’re just nuts. That’s pretty obvious. And if you actually HAVE a history of anxiety, you’re doubly screwed.

And what do they do when you go to an ER? They put you in a bed. If you have POTS, being put to bed solves the problem temporarily. The longer you lie there, the better your vital signs look. To your average doctor, a good-looking monitor means the patient is fine. What I can’t explain is why, when they’re told you have passed out or have an ORTHOSTATIC issue, they don’t even check this out. Orthostatic vital signs should be the standard of care with these complaints, but failing that this is a very easy thing to verify: just let me stand up and then watch what happens to my vital signs. My own doctor even told me “the next time this happens make them watch while you stand up and let your vital signs get all crazy.” It’s too bad this is her best idea and that I have to do this, but it probably is the only way to “prove” that I’m not nuts.

The problem with that, at least with this one visit as an example, is that I felt too sick and confused to advocate for myself. Strategic error: TAKE SOMEONE WITH YOU TO THE ER. I’m used to functioning while I feel like death warmed over and forcing myself to act like I feel fine so I do that automatically, but that isn’t a good way to convey that I actually feel like I am dying.

Which leads me to another possible problem. Doctors are trained to consider patients’ REACTIONS to their complaints. Like, it would be noteworthy if someone came in with their leg off and seemed unaffected by it. People who complain of 10/10 pain while they’re texting and eating fast food are probably full of shit. That is a reasonable thing to consider, obviously. But if you live every day with pretty miserable symptoms you can’t go around acting shocked and appalled by how bad you feel. You learn to normalize it and not appear miserably ill. You get so used to your fairly alarming symptoms that you do calmly discuss them. That may look clinically odd. In fact I’m sure it does.

But I don’t see a good solution. Am I supposed to work myself into an emotional frenzy just to get a doctor to believe me? That seems histrionic. And if I do make myself look really anxious, won’t I run the risk of contributing to the conception that I’m just an anxious mess?

I don’t know how to solve any of this. Until doctors start actually listening to me and believing what I say, I predict having to just fight with them all the time. It’s very concerning and exhausting.

A shit mood

Just ranting today. I felt exhausted for a solid week, POTS was bad, and I pushed through it minus doing much to take care of myself: no healthy food, not enough rest, no sessions on my recumbent bicycle. My job is fairly insane right now. It causes me constant stress and long hours without time to sit down and eat lunch, etc. Everyone is cranky. So all week I’ve flogged myself through work and come home to collapse on the couch to mindlessly watch TV and eat junk food because I’m too tired to cook. My house is a mess, nothing is done on my to do list, and when that happens I feel overwhelmed as to where to start.

I’m feeling pretty blah. Meaning I ended up lying on the floor sobbing yesterday. Lying on the floor is common, but sobbing is not. I hate crying. I’m not sure why THIS trip to the floor was one over my limit, but for whatever reason I just felt DOOMED. I sat on a pity pot. Metaphorically. I’m tired of being tired, I’m tired of feeling sick whenever I eat and barfing all the time (that’s why I got up too fast this time), I’m tired (WORN THE FUCK OUT) from having to constantly think about whether I’m about to fall. I’m tired of actually falling; I’m tired of hurting myself. I’m tired of being unable to concentrate or read a book. I’m tired of getting even more tired and feeling my brain fog reach a level where I think “WTF am I even supposed to be doing right now?” I’m tired of not being able to do stuff I want to do because I can’t be upright that long, although I’m gloomy enough now that I don’t even feel like doing anything to begin with. The only reason I’m out of bed today is that I don’t feel like lying there either.

Often it helps me to ponder that I’m not that badly off. Lots of people have really serious terminal painful shit going on, and those people would be overjoyed to have the OPTION of doing the things I need to get done. Or to ponder that I have a life that some people can only dream of: I own a home, my car runs well, I have a job and no crazy debt, I can afford to purchase healthy food…that list is very long. LIVE AND APPRECIATE THE LIFE DREAMS ARE MADE OF.

That is not helping today. I seem to have regressed to roughly 3 years of age emotionally and am mentally having a tantrum and drumming my heels on the floor because I don’t feel good, don’t know why, and have no idea what I want to fix it. I don’t like it. My plan is to finish my coffee, brush my teeth, and just start getting some stuff done.

Psycho boyfriend update

I have an amazing knack for attracting men who act normal to begin with but turn out to be insane. The second-most recent one wouldn’t stop drinking and then refused to move out when I told him to leave. Seriously. For a month he refused to go away. And I still get e-mails from him telling me how unforgiving and mean I am. I put up with his horrible behavior for years. YEARS. At some point, you give up on people ever changing and have to call it quits, but that isn’t the same as being unforgiving. 

The most recent one is even worse. He was staying at my house a lot but not living here, thank God, and had started pissing me off anyway. He could not go one day without telling me what I should be doing with myself or with my house, and granted, there IS a long list. I have a chronic illness that complicates daily tasks, like cleaning stuff off the table, much less embarking on major renovation projects. But when you are so exhausted you are feeling pretty good to get through the day upright with the bare necessities done, the last thing you want is someone buzzing around your head with a list of all the things you really should be doing. I do have a housekeeper, but he just complained also about how SHE wasn’t doing a good enough job.

That would have eventually prompted a booting-out. 

But a few months ago my POTS got really bad until I actually couldn’t get up and do anything. I was in bed for 4 days barely able to move. I wasn’t diagnosed yet and was extremely upset and frustrated, as anyone probably would be who does not know why they just can’t seem to even move. He stopped by from work every few hours purporting to check on me because he believed I was seriously depressed, although I kept telling him I wasn’t depressed, nor sick, exactly, I just couldn’t move. Of course he also kept saying helpful things like I’d feel better if I got up and did something. Well, thanks for that tip. 

When I got back up and around, I eventually went to take my regular nighttime medications, which include half of an Ativan tablet for restless legs. I had just gotten my prescription filled a week before I descended into bed for 4 days, during which time I was already sleeping like a log all the time and had no reason to visit the Ativan bottle. The bottle barely had anything in it. I wondered aloud what happened to all my Ativan, because usually I pour the rest of the previous prescription into the new bottle but thought I may have put the new bottle away without doing that or something. He mentioned casually “well, I’ve been taking them,” like it was no big deal. “You WHAT?” He said, “I took a couple, and they made me feel better, so I kept taking them.” 

Well, I imagine if you took several milligrams of Ativan at a time they WOULD make you feel better. I counted the remaining pills and did the math and figured up that about 40 mg were missing, which was most of my prescription. They aren’t too happy about refilling this stuff early, and saying “my boyfriend stole my meds so I need a new script” is pretty much doomed to labeling you as a drug seeker. 

Turns out, during those days he was so concerned he was coming by to check on me and make sure I wasn’t dead, in fact he was also shoveling my Ativan down his throat. (In later discussions he told me that my severe depression caused his anxiety to be so high that he NEEDED that medication. I’m not making this up.) 

I immediately called the police and reported the theft, and they came and wrote him a ticket and gave him a court date. Criminal charges were filed. I had to move heaven and earth to get enough Ativan refilled until it was time to refill the regular prescription again and I’m still pissed that this made me feel like a drug-seeking asshole; I had to provide a police report number to both my doctor AND the pharmacy by the time it was over, and I just wanted to DIE from the way they looked at me. It was not good. 

He went to court, pled guilty, and received a fine plus the judge told him not go to anywhere near me. 

Eventually my judgement suffered and I returned a voice mail from him, which said he really wanted to apologize. That devolved into him acting like a sane person for a while, and I thought OK, he has some good qualities or I never would have liked him to begin with…we can be friends. So we chatted via text on and off. But he started slipping up and calling me honey, sending me kissy emojis, and stuff like that. Not good. Turns out he just couldn’t believe that one mistake like stealing someone’s meds when they’re sick would completely defuse any possible romance. Once again, I’m an unforgiving bitch. 

So I just stopped responding to him. He wheedled. He sent casual funny texts. But eventually he started being mean. Yesterday I got a threatening text from him informing me he would be somewhere he knows I go on weekends, which he isn’t supposed to be doing per the judge. 

So now I’m mad. Can I POSSIBLY date anyone who does not wreck my life in some way? No. No, I cannot. I hope that in the future, if I ever deviate from my plan to continue being a crazy dog lady, I will at least be able to stop this crap sooner rather than later. Once someone shows you who they are? BELIEVE THEM.