I say “the problem” as if there is only one – which is laughable at best – but there truly is a huge problem when you are diagnosed with something that is not widely understood or specialized in. The problem involves things like: your insurance company not wanting to pay, let alone approve, for you to go to a facility or specialist outside of your immediate area’s network, doctors not knowing how to apply the diagnosis to the rest of your medical history (including your family’s medical history) and not knowing how to adequately treat it in general.
Houston, we have a problem.
An immediate family member of mine recently had a stroke. She is only 39 years old and thankfully is okay and expected to make a full recovery. This is someone who has never smoked and rarely drinks. But she does have high blood pressure and some other issues. I, too, have a tendency towards high blood pressure. It’s been written off in the past as an effect of my POTS and also as a side effect of birth control pills (which I am no longer on) but what about genetics? I have a strong family history of hypertension.. with at least: My mother. My sister. Both of my brothers. My grandparents. I have heart attacks, cardiomyopathy/enlarged heart, congestive heart failure, coronary heart disease in the family history. And now we have added a stroke to the mix.
So I can’t help but pause at the thought of my high salt diet that is supposed to help the POTS. I don’t have the true hypotension that many people have and I am not sure how much that comes into play with the higher salt treatment because I more often have the hypertension. I also clearly have issues with generalized swelling and sudden weight gain/loss (despite having to go pee 5 billion times a day!). And separately, I do have an unruptured aneurysm (a “small developmental aneurysm of the supraclinoid segment of the right internal carotid artery projecting anterolaterally” to be precise. At least that’s what my MRI states).
I can’t go to my current doctors and bring this up looking for answers. In a lot of ways, they are in the same boat as me when it comes to POTS: we honestly just do not know. But it’s a serious question and certainly a legitimate one. We know that being on a beta blocker did not help me in a way it should have (though there were periods of too low of a pulse and BP – felt HORRIBLE!) and it made things like my flushing episodes and hives significantly worse. I know sometimes when I drink something like Gatorade, it helps. Other times, it makes me feel crappy. Same goes with certain foods and yes, adding salt. Sometimes, I know when I am drinking plain water that it is doing the trick and other times, I need something more. So am I having periods of needing high salt and other times, I don’t? Is that what my swelling is all about? The circulation issues? The flushing? Is it working in cycles? How is this affecting unrelated health problems or potential health problems? What is unrelated and related anyway? No clue. It is all just one really big, fat question mark.
POTS patients are not all created equal. That can be said about patients for autoimmune disease and really, let’s face it… any disease out there! It’s just like how we all have different DNA and fingerprints.. everyone is different. This adds to an already complicated, misunderstood situation. Then there is the lack of time, the lack of resources…
Here’s the thing about me. I see a lot of times on the support group Facebook pages that people are really scared about their diagnosis of POTS. I am not. Disclaimer: I’m saying that matter-of-factly about myself and not in judging way about other people. I can understand the fear. But I know when my heart is skyrocketing (which I have lived with my whole life pretty much so I find it to be quite “normal”), it is because of my autonomic system. I am not dying. I do not feel like i need to go to the hospital because I already know what the problem is. I’ve been living and dealing with many of these symptoms as far back as I can remember (childhood) and I know how to live with them. It’s exhausting and it’s annoying and sometimes, it just plain does NOT feel good. But what I have found with some doctors I have seen is that they expect that I am terrified and need to be soothed. I don’t need any soothing. My questions have always been “can we make this better? Can I *FEEL* normal? Can we fix this?” They have not been “am I going to die? Is this dangerous?” I am not panicking. So when they’ve given me various pills and treatments that have either done nothing or have made things worse, I start to settle into the thought that this is just something I need to deal with and I know that I can because I always have. …Though I should openly admit that I may very well lose my mind if I continue trying to live a full life while feeling this rundown and exhausted. I don’t faint. I am still able to do things though not always at my best. I am still working. If my life is not in danger and going to the doctors is just going to continue producing the same answers that don’t even help over and over again, what is the point of stressing about taking the time I already don’t already have enough of to go to appointments? What’s the point of stressing about fighting my insurance company to go out of the area? I can tell you that stress surely exacerbates my symptoms so I want to minimize the stress as much as possible.
Sometimes in life, there are events that just change you. It is crazy how things happen and how suddenly life can change in a single second. It can change your perspective, renew your appreciation and gratitude, give you a wake up call… I had an event like this almost two weeks ago and yes, it was the fact that my sister had a stroke. It was at a family party and it happened when she was talking to me.
I believe I have talked about my family medical history in previous posts. It is extensive just between both of my parents. They’ve both had cancer. My dad had congestive heart failure (cardiomyopathy & enlarged heart). My mom has Sjogren’s Syndrome. That’s just the beginning of their lists. Add in my siblings, grandparents, aunts & uncles… it takes literally about an hour to go over the history with new doctors. Most of their histories start a younger ages too. I have given up writing this stuff on their forms and instead of a pre-printed list that I bring and write “see family history paper” on the form. Just my maternal side of the family takes up a whole page, typed in a 10pt font. This is why some of my doctors take the POTS diagnosis and want to smack some other doctors for downplaying the diagnosis to me. First of all, they know me. It gets downplayed and it confirms what I have in my head because I downplay it myself. Second of all, they are legitimately worried about where my health is going and for all the right reasons, obviously.
My ob/gyn took me off all hormonal birth control because of my spikes in blood pressure. She told me that she had a bad feeling about me being on it. She also didn’t like the higher estrogen ones because of my mom’s history of breast cancer but her main concern was the blood pressure and the increased risk of stroke. I can’t say enough how much she stressed this concern to me and even though I truly felt like “that won’t ever happen to me!”, I ultimately went with the thought that it was better to be safe than sorry and I also honestly love to be on the least amount of medications as possible. I never thought in a million years that it would happen to my sister instead. It really makes me wonder about my own blood pressure. How can I just write it off as being a part of POTS? For years and years and years, I wrote off my heart rate being most often over 100 (even resting) as just “who I am.” Multiple doctors questioned my pulse when they would find it to be at 120… 130… for no reason. One doctor accused me of having anxiety. And yes, “accused” is the right word. She was practically shouting at me even though I wasn’t anxious at all until she started doing that… wasn’t even my real doctor. It was the first time I met her because she was covering for my own primary doctor who had just went out on maternity leave. A few years ago, a pulmonologist I was seeing for my asthma wanted me to go see a cardiologist. She was the first doctor that really spoke up about the tachycardia and was not satisfied with my standard response of it being totally normal for me. My mom actually went to see her yesterday and told her about where I am now and that her hunch of it not being just “something normal” was correct.
There is more to this story. But like I said, there is a problem with having a diagnosis many people aren’t familiar with. I can’t even guarantee that if my insurance company ever decides to approve me going to see a real live specialist in POTS that they will be able to provide me with any more answers than I do now. I have my doubts that they will know how to apply the POTS diagnosis with anything else that is going on, including keeping an eye on any risk factors for potential repeats in the family medical history. I do know there is a medical article published (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2600095/) that states this:
In some primary cases there is an hyperadrenergic state16 leading to increased norepinephrine, which could be due to impaired clearance or decreased uptake by the synaptic cleft. These variants cause profuse sweating, anxiety and tremulousness and the diastolic pressure is high. This is thought to be a genetic disorder with involvement of family members. In these patients symptoms will be gradual and progressive. They will have orthostatic tachycardia as well as associated hypertension.
I at least know my diastolic tends to be high. I believe I have my norepinephrine levels checked before and it was normal? Not positive on that though (the fact that it was done at all, I mean).
It’s frustrating. Beyond frustrating. I want to take my health seriously.. even when I think I am being crazy (my sister thought she was as she was headed to the hospital!). Where do you go from here? When you have doctors who assume that the testing falls on a different doctor (and insurance companies won’t let some doctors do some of the things they want to at all), it feels like all you’re doing is going in circles.
[And as a brief note: I haven’t been able to keep up with this as much as I would like (to say the least). I appreciate the comments and hope to get back to them when I can. I also would like to catch up on some blogs I haven’t been able to read as well. This is part of what happens when you’re trying to keep up with everything in life.. stuff falls to the wayside even when you don’t necessarily want them to. I just knew this subject was something I needed to talk about after what happened. So I got it out as soon as I could.]
photographing POTS 