an evening in the life of THIS pots patient

What exactly are my vitals doing while I am standing, sitting and laying down? Well.. it can vary from what I am about to show you because some days I can have very low blood pressure (hypotension) and periods of low heart rate (brachycardia). But if you were ever wondering why the heck I am so tired and run down all the time… this may explain it more for you. My heart and circulatory system and body is constantly swinging all over the place. It’s not an exaggeration when people say that having Postural Orthostatic Tachycardia Syndrome can be like running a marathon constantly all day. When my doctors figured out this part of what my body was doing, it explained so much over the years. And because my body is constantly changing and the blood isn’t flowing properly, what bothers me today may not bother me tomorrow and vice versa. I have learned (at times the hard way, unfortunately) that I have to be overly cautious when it comes to putting certain things in my body. Medications and things like alcohol can affect me differently and drastically depending on the day. My autonomic system is not functioning properly and is unpredictable — this in turn can make my body unpredictable. It makes ME unpredictable. I am in the middle of figuring out WHY.

Long story short: I wasn’t feeling well AT ALL by the time I got home from work today… all day, all I wanted to do was lay down but couldn’t. Starting from the very top left corner, going across, then starting from the left of the next row, I will explain the circumstances surrounding each and every one of these photos. And yes, this is in chronological order. I will also calculate the changes in blood pressure, heart rate and the pulse pressure. An explanation of pulse pressure can be found HERE.

Photo 1, top left: I came home from work and had been laying down in my bed for approximately 5 minutes. I felt so run down and fatigued and I had what felt like the beginnings of a migraine. I felt cranky. Still having flushing issues from earlier today. Blood Pressure – okay (optimal is 120/80); Heart Rate: on the higher side but I often have a higher resting rate (normal is still considered to be 60-100 beats per minute). Pulse Pressure: 46 (optimal is 40).

Photo 2: This was immediately upon standing up out of bed. I felt a bit dizzy but nothing crazy. Really not feeling well, achy. BP: Shot up. Hypertension is anything over 140/90.. and they really do not like for the bottom number to go above 100 but mine likes to do that from time to time. HR: immediately went up 25 bpm. PP: 38.

Photo 3: I started walking and headed toward the bathroom. I came back to check myself again – I have found that standing still vs. walking makes a difference in my blood pressure. When I start moving around, more often than not, my pressure will plummet but as long as i am upright, my heart rate will stay high. BP: dropped, top number most significantly. HR: same. PP: 21

Photo 4: I was still moving around and still up on my feet. I stood still for a few minutes. BP: stable. HR: up 6 bpm (that’s a total of 31 bpm from laying down… as long as I am standing, it will either stay there or keep climbing). PP: 29

Photo 5, 2nd row to the left: I really felt lousy so I laid down waiting for dinner to be ready. BP: dropped completely to normal. HR: dropped 24 bpm. PP: 36

Photo 6: This is after getting up, sitting at the table for awhile and finishing up my meal (spaghetti with meatballs). Still felt pretty lousy. Heart palpitations – possibly from the flushing episodes I was having.. i get extra sensitive to foods and such during those kinds of days. BP: skyrocketed back up hypertension-style. HR: up 5 bpm from when I was laying down. PP: 40

Photo 7: Still sitting at table 15 minutes later.. just trying to relax. Feeling very lethargic and blah. BP: still high but stable. HR: dropped 10 bpm. PP: 42.

Photo 8: Walked from the kitchen back to my bedroom and stood. BP: bottom number went up, top number went down. HR: up 19 bpm. PP: 25

Photo 9, 3rd row to the left: I decided to experiment. Do a version “poor man’s tilt test” if you will. So I stood still and rechecked my vitals between 5-10 minutes or so. By this point, my feet and legs were already getting the lacy purple look to them and swelling (this is from blood pooling). BP: stable but the bottom number was still too high. HR: Up 29 bpm from when I was sitting. PP: 25

Photo 10: still standing in the same spot for about 5-10 minutes. Legs and feet looking worse. I feel off. BP: about the same. HR: Up 31 bpm from when I was sitting. PP: 27

Photo 11: still standing in the same spot for about 5-10 minutes. Legs are swollen around the knees and I was definitely purple with splotches of red. legs are starting to feel a bit more shaky and I have that “weak in the knees” feeling. BP: about the same. HR: up 32 bpm PP: 22

Photo 12: I had to move at this point because I felt like I was going to drop otherwise. I had been standing still for a good amount of time… if you ever see me standing, you will likely also see me fidget and move my legs and such a lot – now you know why! I walked around a bit and then checked again. BP: dropped. HR: dropped 1 bpm. PP: 21

Photo 13, 4th row to the left: I decided to keep on with my experiment and stand still again. By the time i took my blood pressure, I knew it was time to lay down immediately after. BP: shot back up. HR: same. PP: 25

Photo 14: This is after I’ve been laying for about 5-10 minutes. Legs and feet were starting to look normal again. BP: stabilizing and going back down. HR:  dropped 32 bpm. PP: 39

Photo 15: This was probably taken about 30 minutes after I laid down. BP: still dropping.HR: dropped 35 bpm from when I was standing. PP: 43

Photo 16: I decided to take it again once I was sitting up in bed. BP: stable but went up. HR: went up 15 bpm. PP: 35

Today, my heart rate was actually low for what it normally goes up to and my pulse pressures tend to drop even lower (especially after things like a shower or bath). If you look HERE you can view a day that truly was all over the place. So tonight didn’t look so bad, comparably speaking, but it did not feel that way to me. In fact, i probably felt more lousy today than I have in awhile. However, I think most of the daily “damage” comes from the swings in my blood pressure and heart rate and also my pulse pressure being either too narrow or too far apart. I feel my worst usually when my pulse pressure is not right. Notice how stable I am only when I am laying down. I feel more alert when I lay down and I think by the time nightfall hits and I am in bed, I feel more awake than I did the entire day. Why am I sharing this? For others who are dealing with the same thing so they are not alone but also for awareness. Next time you see me upright (standing or sitting) and I seem out of sorts… keep in mind what my body is doing. Remember how when I was standing, all the blood was pooling to my legs and feet? This means that my body is not adequately pumping my blood back up again and ultimately, I am not getting as much as I should back up to where I need (like my brain, for example). Probably the only time I have “proper blood flow” throughout my body is when I am horizontal. I couldn’t make this stuff up if I tried! But I am working on figuring it out and accepting where I am in the moment because believe me when I tell you – this has been one of the most frustrating things I have ever dealt with.

hello, flushing with fatigue. we meet again.

My flushing and hives have died down significantly since I got off the beta blocker (I also took myself off of all 3 antihistamines). I still get the episodes but not as bad and it’s been something I could ignore because they haven’t been nearly as bad. But today, after eating the same macaroni and cheese that I have eaten recently with no symptoms, my face flushed and i got the standard inflammation and itchiness in my eyes, lips and nose. My whole being is fatigued and I just want to put my head down and close my eyes. I feel lethargic and worn down. Brain fog has definitely arrived. My face isn’t nearly as red as it can get and I don’t have the hives down my neck, chest and arms though I have that feeling like it’s slightly there (and I am definitely itchy). I am not sure what my blood pressure is but I know my heart rate is up and it’s pounding too. As you can see from my other post today, I am having a pretty symptomatic day and I know I probably need to lay down – though I can’t because I am at work.

I am just confused. I know I am in a downswing in regards to how I have been feeling physically but what in the world is triggering the flushing episode to return in a huge way? I have been considering looking into antihistamines again now that I am off the beta blocker (since I believe that was the culprit in making my flushing episodes significantly worse!). The only thing is that I want to know what’s triggering these episodes first before I go back on anything to treat them and also, I have found that since being on Zantac 150 for antihistamine purposes and going off of it, I actually have heartburn! The only time I have ever had heartburn in the past was when I was pregnant with my daughter and maybe a time or two after that due to the hormonal changes during “that” time of month. I don’t know if the Zantac triggered something or what but there is no other explanation for me having increased heartburn!

This is so annoying and frustrating. I guess I will have to start using my blood pressure/heart rate monitor again and start keeping notes on everything for awhile. But to be perfectly honest, I feel ridiculous pulling out that monitor while I am out and about and especially at work. It’s not quiet and yes, I will admit that I am afraid that people will think I am just looking for attention… and that’s why I haven’t been doing it. Yeah, I know.

my life as a zebra.

Today one of my doctors referred to my case as a “zebra.” This term is used in medicine for an unlikely diagnosis. In medical school, students are taught how to think logically in regards to differential diagnosis: “When you hear hoof beats, think of horses, not zebras.” In other words, look for a common illness and not so much a rare one. Unfortunately, there are some doctors who do this to a fault. Yet another reason why awareness is key.

In my family – it’s all about the zebras. We’ve got a couple of horses in there too but our genetics are practically screaming zebras at this point. When I fill out the family medical history portion on my medical forms, I run out of room. Without fail. Let’s just say it’s been enough for most doctors’ jaws to drop.

Perhaps it is this knowledge that made my primary doctor take me seriously in my first visit. I came in her office nervous but prepared with my complete truthful history, a list of issues I’ve been having, and of course – the family medical history. I was terrified that she would confirm what I had made myself believe for YEARS now – that it was all in my head and I was just crazy and a hypochondriac (i do actually have a few of those in my family as well and that is exactly why I have stayed far away from doctors as possible). I made myself believe this even though there were people, doctors even, that could physically see something was wrong at times.

I am a mother. My daughter is 7 years old and the last thing I want is for her to ever have to deal with some of the things I have dealt with. I want to save her from everything I possibly can. I believe that becoming knowledgeable in my health and my family’s health will give her an advantage. I want to be more proactive with her than I was able to be for myself (though I am definitely working on that now).

To be honest: Not feeling quite healthy your whole life without knowing a good reason (or even if you do have one), you end up becoming that person who always has something. People become annoyed by you. They stop asking how you are. They even stop believing you at times. Let me be clear. I am not on a search for what’s wrong because I want to be sick or want diagnoses or I want to be on medication and have this sort of attention. I hate medication and have tried my hardest to be on as little as possible (I don’t even like to take advil). I want attention for the things I am doing right – like my photography for instance. There are so many things I don’t talk about because I don’t want the sympathy and people fail to realize that. I am not even writing this blog for the poor me attention. I want there to be awareness so others don’t have to go through what many of us have. I do it for my daughter. I do it because I am a person that processes things out loud (or through writing). I believe a person’s story, even on one subject, has the ability to help other people. As a result, I believe in sharing our stories, both good and bad.

My ultimate goal is to overcome all of this as much as I can and to prevent as much as possible for my daughter and any future children I may have. I want to do this as naturally as I possibly can – dietary, lifestyle, etc. I want to find the cause of my POTS and it’s likely I have one to be found. There are already several possibilities.

So even though I am currently having a moment of not wanting to focus on my health so much, I am going to keep fighting and researching. I am going to remember that for me, being a good mom is about taking care of myself so that I can be the best for my child. I am going to keep speaking out about what is going on and I am going to be grateful for the people who continue to support me along the way.

Here is a photo from a few years ago. Can you find the zebra? Look at the skin tones of the feet. It’s subtle…but it’s there. This is one of the many physical signs that pointed to something not being right.