LindsayToday is my POTSiversary. What is a “POTSiversary” you might ask? It’s the totally clever way of saying it’s my illness anniversary!
Three years ago today I underwent a tilt table test and was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), a form of dysautonomia. Prior to that, I was diagnosed with ME/CFS and a mild case of gastroparesis. I still do not know what has caused my POTS. I don’t even know if something has to have caused it, but that’s a story for another post.
I’m sure I’ve shared the story that led to my diagnosis with you all at some point, so I’ll give you the condensed version. One day in May,2009, the BF and I were with a few friends at an outdoor festival. I started feeling sick to my stomach, so I went to wait in line for the porta-potty. I never made it to the toilet (although, thank god…is there anything more disgusting than puking in a porta-potty with nowhere to clean up??). All I remember is waiting in line, then waking up lying on the street. I had fainted, hit my head on the street when I collapsed, and was out for a minute or two. Long story short: the paramedics were called, I was accused of being drunk (there was a beer garden at the festival where I had ONE beer), and my face and arms were numb and tingly. The paramedics took me into the back to check my vitals. The BF had gone off to a different part of the festival while I waited in the line for the “bathroom”, so he didn’t know what happened and searched for me for a while. I think he still blames himself for that.
Because I had hit my head on the street, the paramedics wanted to take me to the hospital to make sure there wasn’t any internal bleeding. I was eventually released with a diagnosis of “dehydration”, because it was like 73 degrees out that day, and apparently that results in extreme dehydration for southern Californians. I never got to finish my beer, my favorite t-shirt I was wearing got ripped, and, although I got to ride in an ambulance, it wasn’t worth the $3000 bill. So, all in all, not a great day.
In the beginning after my ER visit, I couldn’t stand for more than a minute without feeling like I was going to collapse. I was constantly dizzy and lightheaded. I had to crawl the 15 feet to the bathroom, because it was too far to walk. I was so weak that holding up a pair of pants to put on took too much energy, and I started getting dressed lying down. IF I got dressed. Eventually I gained a little strength and could walk further, but every movement had to be planned out. If I wanted to walk the 30 feet to the kitchen, I first had to walk the 15 feet to the bathroom, sit down for a rest, then get up and walk to the kitchen. I couldn’t stand in front of the fridge while looking for something to eat – I had to know exactly what I wanted so I could grab it and go sit/lie down. I was afraid to be alone. Anyone who knows how fiercely independent I used to be will understand how difficult that was.
For the next two years I was referred from doctor to doctor who scheduled test after test. Everything came back normal. Or, at least that’s what I was told. I was extremely frustrated that I felt awful but couldn’t find any proof that anything was wrong. Without a diagnosis or even evidence that something was off, it felt like no one believed me. I started to doubt myself, and began to wonder if it was mental, if something just wasn’t right in my head. After all, how could I be having so many symptoms and not have anything show up on a test??
As you know, eventually I was diagnosed with POTS, and while the diagnosis was heartbreaking, it was something.
I recently ordered a copy of my medical records. It seemed like a good idea just for record keeping purposes, but I also wanted a reminder of what I had been through, and how far I’ve come, for my POTSiversary. After reviewing my records, it turns out that many tests didn’t come back normal. As you can see below, they showed something else was going on with my heart. I’m sure you can imagine my frustration – for years I felt weak, dizzy, lightheaded and felt like I was having a heart attack, yet was told that there wasn’t a single thing wrong with me – everything was absolutely normal. So I pushed myself, thinking I was overreacting, that it was all in my head, that every adult felt that way.
The results I have highlighted above are not major – PACs, blunted blood pressure response to exercise, SVT, mild tricuspid regurgitation – can be explained by dysautonomia (as far as I know – someone please correct me if I’m wrong). They aren’t cause for concern, but if I had been informed of those results 5 years ago, I would have felt so much more validated. Instead, I left each test feeling defeated, accused, and debilitated. I felt like a liar.
Honestly, I was angry when I first saw these medical records a few days ago. Why was I not told of this? I was made to believe that I was imagining it everytime it felt like my heart was “off” when there was evidence that my body was not behaving normally.
The moral of the story: Always ask for a copy of your medical records. You may have to submit a written request, but by law, the provider is required to give them to you. It could make a huge difference to your health.
I still hate this illness, and I still have a long way to go before I’m anywhere close to the level of health I was at before this all started. With recent tachycardia issues I feel like I’m taking steps backwards instead of moving forward. But I’m grateful that I know what’s wrong with me, that everytime my heart flutters or I get chest pain I can say, “That’s okay – it’s just dysautonomia.”
Because it is okay. It is just dysautonomia.
“We must let go of the life we have planned, so as to accept the one that is waiting for us.” – Joseph Campbell
– Linds
Not ALL hospitals will give you your medical records – despite Obamacare’s 2500 pg rules…I CANNOT get my records from one of the largest medical centers in Massachusetts. I am “not entitled” to them according to the Legal Department there and the doctor tells me I have NO BUSINESS having them. I can get a summary – IF the doc is willing to write one out, but he is not. He is not a very nice man at all.
Right now I am without a doctor and just live with my ever changing dysautonomic sx, driving my husband crazy with them.
As I keep saying – I would be better off DEAD. Not a damn health care provider (specialists) I have seen cares about my sx and I am nothing but a burden to my husband. The worst of things, I can’t work.
My latest gift from my autonomic problems is severe chest pain and an extremely LOW pulse. BP is fine. Pulse – almost dead. 33. 40.
The cardiac tests I had at a local hospital (I have those records) are all “perfect.” Therefore, no one takes me seriously when I have my cardiac issues.
You are lucky you have a boyfriend that takes all of the struggles in stride. You have no idea how lucky you are.
i’m sorry to hear you are having such a difficult time getting a copy of your records. you may want to consider filing a complaint. regardless of what their legal department says, you are entitled to a copy.
i was having low pulse as well – in the 30’s – about 6 months ago. i still get low pulse occasionally, but am back to having bigger issues with tachycardia. the low pulse is extremely frustrating – i’m sorry you’re experiencing that. are you on a beta blocker?
i’m very lucky to have a supportive boyfriend, and i know it. i tell him daily how lucky i am to have him. he and i have been through a lot together, with medical issues and otherwise. before i met him, he was in a bad accident that broke his back. he had to relearn how to walk, so he knows what it is like to be in pain and to have your body not do something you want it to. neither of us is perfect, we’re not even perfect for each other, but we do a great job of taking care of and supporting each other.
Agh! What is wrong with doctors?! I get all my test results and research numbers that are on the far ends of the normal reference range. My thyroid hormones were low normal for 7 years and when somebody finally palpated my thyroid, they found two large toxic goiters. Infuriating.
You’ve come a long way since that day!
Ps I love how much you look like your avitar (in a good way!).
oh my gosh, how awful! it is so frustrating when they don’t investigate test results further. even if it is something minor, if it is abnormal, it seems like the cause should be investigated.
thanks! a cartoonist friend actually drew my avatar to look like me. i love it!
What a great artist! I want that friend. 😉
Ooh! I’m hijacking your comments here but I want that friend too! 🙂
While it may not have confirmed the POTS it could have confirmed it wasn’t all in your head so to speak. I even for years got copies of my doctor’s notes and any time a letter was sent to another doctor, I asked for a copy. I have boxes of papers and chart notes. I even have the surgery notes from my hysterectomy.
Yes – exactly! It would have been nice to know it wasn’t all in my head.That’s great that you have all of your records. Recently I’ve started organizing my records in a big folder so that they are easily accessible and so I can see any changes in test results (like blood work) over time.
I have many of my surgery notes too. Helps me to feel empowered.
YEP YEP YEP! Always get copies. My binder isn’t that big but I’m looking at 2014 now.
how is your binder organized? by year, or test? i’m trying to figure out the best way to organize all my records!
Kind of by test (bloodwork, procedures), etc. But then this year I am going to do it by year. 🙂
Dude, your POTSiversary is on my birthday. That’s weird.
That IS weird! It must be a memorable day 🙂
Oh, and happy belated birthday!
Same story here! I had an episode of non sustained ventricular tachycardia during a stress test and the EP Cardiologist (whom I no longer see) actually said “yes, but you’re fine”
Umm, no…
I’m having a tilt table test this month, for suspected POTS, so hopefully I get some answers from that, good or bad, I will know and be able to move forward with things.
Good luck with the tilt table! I hope you get some answers.
What is it with May of 2009….was it national lets get POTS month? That is the same month and year I got my diagnosis!!
If its okay I want to share your blog on my blog.
I am really enjoying reading it.
Janet
That’s crazy – I know a few other people who developed POTS symptoms around then, too! Must have been something in the water 🙂
Yes, please feel free to share! Thank you!
Hey Lindsay! It’s so strange – I have like all the same findings as you!! On my holter I marked what I now know to be SVTs, PACs & PVCs but my old cardiologists didn’t ever bring them up. I had a bad SVT attack a couple months ago and had to get adenosine to restart my heart rhythm. NOT fun. This would have been nice to know beforehand! They are wanting to do an ablation due to the severity of my SVT now. I asked if dysautonomia and SVT were related, but my EP said they were two separate things. Have you heard somewhere that SVT is related to POTS?
hi stacey, thank you for your comment!
from what i understand, dysautonomia and SVT are two separate things. however, i know quite a few people with dysautonomia that also have SVT. does the doctor that wants to do the ablation know about dysautonomia? i have heard that an ablation is not recommended for certain types of dysautonomia, including POTS. are you on any medication?
Hey there! Thanks for the reply. I have POTS and NCS. I don’t respond too well to meds (another reason why the ablation is recommended) – so I’ve opted for lifestyle modification , exercise, water, salt. I talked it over with my EP and he said the ablation procedure not recommend for POTS patients is a SA node ablation, which he hasn’t done in over 15 years. He said if the issue is too close to the SA node he wouldn’t ablate.