Blood Pressure and Heart Rate: How often do you measure?

Today I am answering another question I am commonly asked. How often you measure your blood pressure and heart rate is dependent on a number of features which will be unique to each patient. Here are my tips based on my own experience. No doubt my fogginess has missed some I will think of later. But if anyone has any others please feel free to add them in the comments.

I should add I'm not advocating a particular brand or device. It's worth working out a) what you can afford, b) having a chat with your doctor as to what they recommend, c) reading up on some online reviews, and d) asking on forums for what brands and styles others have found useful.

(Note: As always I am not offering medical advice of any sort, and not recommending any treatments.  A brain fogged woman sitting on her couch in her flannelette pjs, taping away on a keyboard, whilst binging on macarons and salty chips, is not a substitute for professional medical advice. All medical decisions, including treatment options, should be discussed with your primary treating physician.)

When I first became ill I was having rapid drops in blood pressure and both it and my heart rate were oscillating continuously. I had no idea what my body was doing and Dysautonomia was simply a word on a page. With months between specialist appointments I had no one to ask if what I was experiencing was a normal part of the disorder or if I was actually about to die. It was a scary time. I'll admit I became a bit paranoid and hypersensitive to every little fluctuation or twitch I felt.

What was that?

Oh crap!

Mr Grumpy, come and feel my pulse!

This doesn't feel right.

Arghhhhhh.....

One day I was in my local chemist and I spotted a blood pressure machine sitting next to bench where I was waiting for my Florinef. It had a large Come in Michelle sign, as Mr Grumpy calls a sale sign. I ummed and ahhed. Wanting to pick it up but not wanting to admit that I wanted to pick it up. The pharmacist came out with my pills and caught my checking it out.

Do you want to have a look? They are a good machine.

Okay. I guess.

Is it for your grandmother? 

Ah, no. It's for me?

Really?

*Insert confused look*

Yet again I was faced with the fact that I was living in a world where my lack of blue rinse and hip replacement made me the odd, younger woman, out. After a quick demonstration, I grabbed the box in shaking hands and sheepishly took my purchase to the check out at the front of the store and headed home.

The family of course thought it was a hilarious new toy and everyone took turns trying it out. In truth it was probably good for my kids. They would take my readings in the middle of doing my exercises.

Hey, Mum. You have the heart rate of an elite athlete. 

And then they would fall down holding their stomachs and laughing, thoroughly impressed at their amazing joke. 

Those early days I took my blood pressure and heart rate frequently. I was so worried about my what my body was doing and back then information was quite limited. So I lived in a perpetual state of hypervigilance accompanied by the frequent whir of my blood pressure machine as the cuff inflated. Soon I was developing a bruise on my upper arm and had multiple long lines down my bicep where my flesh was being squished each time. But taking those readings helped me to feel in control of my situation and I was happy to live with the collection of marks on that poor arm. What I didn't realise was that I was becoming so focused on readings it was making my anxiety worse.

Looking at my dusty machine sitting next to my bed today it's hard to believe how I could have gone from one extreme to another. Continual monitoring to rarely monitoring. Every 3 seconds to once in a blue moon. When I speak to other long term patients it tends to be a bit of theme. Those early days are so fraught with fear from the unknown and all these years later I can't even be bothered all that often. It's too much effort to go into my bedroom and grab it so I just ride out whatever symptom prompted the idea to get it in the first place.

It is easy to become obsessed with readings (puts hand up) especially if you don't have a good support team, medically and personally, around you. Anything for control and understanding. Anything to make sense of the weirdness that your body throws at you. But at some point that focus can be destructive. Constantly focusing on numbers, especially when they don't correlate to what we are feeling can leave us more worried and confused. We are fed so much misinformation, or no information, from doctors who are unfamiliar with dysautonomia, that we often feel we can't trust when they say the classics.

It wont kill you

You're heart is sound.

That reading is impossible.

*The last is my all time favourite. I have been told that my readings aren't possible, only to find them entirely accurate during an arterial bp and on continual cardiac monitoring. Our normal is often frequently abnormal. And not everyone can wrap their head around that.*

Often this is also accompanied by that little voice that resides in our mind and whispers,

What if this time it is a problem?

Who says illness isn't fun?

Am I saying you shouldn't check your readings? No. But it is about balance. Readings can be very helpful in certain situations. In others not so much. 

So when do I take it?

• Initially it is important to establish your normal. And that normal can be very different to other patients. Working out your normal will help in establishing when you need to worry. If you normally run with a bp of 90/70, 110/70 (which technically falls in the normal range) may be high and leave you feeling worse. The same goes for hr and even temperature. If for a month or two you take some frequent readings eg morning, noon and night, lying, sitting, standing. It will give you an idea of what your particular form of normal is. 
• Take that information to your doctor. This will give your doctor more of an idea of what is going on. If you graph it, and there are many apps that will do this, it also makes it easier for you and your doctor to investigate patterns. For example, mornings are hard for many and they can wake with very low blood pressure. Knowing this is a common theme can mean that you implement some techniques to try and alleviate this. If afternoons seem to be your worst time you may instigate a different plan to address that time.
• Before going to a standard appointment. When I have an appointment coming up I still tend to take some readings just so I can give my cardiologist a baseline of how I've been going. It is nice to have readings/data to fall back on, instead of trying to simply explain what is going on.
• Starting a medication. Even now when I start a new medication I take a week of pre-starting and measure for a week after. This can give you and your doctor an idea of whether or not a medication is working, or even becoming problematic. For example, when I started Clonidine I felt off. I was exhausted and my mood dropped. When I rang my cardiologist to say what was happening I had a set of data to show that my blood pressure was dropping lower and lower and more rapidly with every dose. The combination of that data and my self-report meant that my doctor was happy for me to stop immediately.
• If I feel really out of sorts. This is something that I'll do periodically if my symptoms are either far worse than normal or abnormal even for me. This was really helpful when my heart moved into bradycardia. Not only did I feel like death, my heart rate revealed that. Again it was data that I could send to my doctor and led to a quick response. 
• But for the most part I rely on how I feel. If I feel sick, I feel sick. Whatever my reading it doesn't change how I feel. For me relying on how I feel as opposed to any  numbers on a machine has been freeing. Months can go past in between readings. I tend to know when I need more fluids or more salt, or some extra Florinef etc based upon how I feel. If I am just feeling normal sick measuring doesn't even come to mind.

Tips:

• Often with dysautonomia, blood pressure and heart rate are not reflective of how we feel. 
• Some of this is due to the fact that our cerebral blood pressure can be different to that measured by an arm reading. 
• Part can be attributed to the frequently oscillating blood pressure which many patients experience and can only be caught on continuous monitoring. Which means it can be pot luck if we catch an accurate reading. 
• Alternately, if you have particularly low pulse pressure some commercially models will simply read ERROR as they are unable to pick up such a faint pulse. 
• And programs that rely on a finger reading (often available via a PulseOx or Smart Phones) are unreliable as they register movement, or if you have poor peripheral perfusion fail to even register that you have a finger (I set PulseOxs beeping in hospital every time and one physio joked that I looked really good for someone who the PulseOx said was dead).  
• You get what you pay for. Like compression stockings, the more you spend the better the quality. When buying a machine the more expensive the more accurate and often the more options are offered (eg keeping a record of readings, compensating for arrhythmias). 
• Make sure you have the correct cuff size. For example, I am a paediatric to small cuff size. My arm was measured to ensure I had the right size as wrong sizing can lead to incorrect readings.
• Learn the correct way to put on the cuff. There are online instructions (eg here) for taking an accurate blood pressure. Incorrectly placed cuffs will give you no reading or incorrect readings.

• Take your machine into your next doctor appointment to ensure it is correctly calibrated. Not all machines are accurate, even when you pay good money. It is simple to take it into your doctor's office and compare it to their manual and automated readings. You can also ask to be shown the correct way to take a blood pressure.
• Get you machine serviced every year. This is something I didn't know until recently. Most companies or medical supply companies can provide this service for a small fee. You should also get your cuff checked as they can develop small holes as can the tube. 

So those are my basic tips. As always, follow your doctor's instructions as every case is different and your doctor may wish for you to monitor your blood pressure and heart rate for a range of reasons specific to your case.

But overall, my tip would be to not let it consume you. The more we worry the more we stress and the worse our symptoms. Dysautonomia is a chronic condition, which means that we'll be living with this for quite some time if not for the rest of our lives. Finding ways to balance our medical necessities with quality of life is so very important.

Michelle :)