Last month marked the year anniversary of my last visit to the autonomic center at Stanford.
No I didn't have this date circled on the calendar, I just happened to make the mistake of trying to drive somewhere on the high schools graduation day this year, which reminded me of that same day last year when I was trying my hardest to hold in the desire to pass out, and or puke while stuck in miserable traffic.
That tilt table test was a doozy, you guys.
But it got me thinking about how far I've come in this last year. Not that I don't still feel like a ticking time bomb waiting to go off, but things are a lot brighter then they were last summer.
So I thought I'd spread a little of my P.O.T.S knowledge out into the universe because there is nothing I like doing better then telling people what to do.
I'm really pretty good at giving advice about life.
You wouldn't be able to tell this about me because my own life is a giant pile of doodoo, but I do follow my own advice most of the time so maybe I shouldn't start up a new career as a life coach.
Just call me CarinaMD, which is basically what my real life social media handles are, but thats because that's all I could get related to my actual name not because I think I'm a doctor.
Now we have that issue settled down.
(shameless plug: follow me @carinamdee on all the things)
I could go on for days about doctors, and medicine and proper diagnosis. But this is more about after diagnosis.
You've been given this life sentence, what now?
(also see my letter to a newly diagnosed personage, and this post from a few months ago)
If you don't have Postural Orthostatic Tachycardia Syndrome, and don't care to learn about treatment options or you don't have an hour to read this post, don't click on.
It's very long and very medical.
First off, this disorder is not your fault.
It took me a long time to come to terms with this.
If I hadn't gone on a trip while sick. If I took time off work to recover from being sick. If I ate better, or exercised more. If I got more sleep, drank more water, or if I didn't pop tylenol so often.
But the truth is, it was looming inside me no matter what. My body was a ticking time bomb, and that's just when it happened to go off. This didn't really resonate with me however until my visit to Stanford, almost three years after my initial diagnosis.
The first thing the doctor told me, after reviewing all of my medical history and test results was that I was too tall and had bad genes. Two things I have absolutely no control over. This is partially why I, this last year have started seeing a functional medicine doctor and have had genetic testing done.
Everyone is dealt their own stack of cards, and you may not be able to change them but you can learn how to best play them.
Here are some tips and tricks that I have used to help me play this P.O.T.S card a little better.
Team Doctor
The most important thing in all of this is to have a good team of doctors on your side. Hopefully, since you've been diagnosed that means that your doctor has done some research and not brushed you off as just having anxiety or being a hypochondriac. Locally, I have an awesome primary care physician, cardiologist, chiropractor, and a nutritionist. Then at Stanford I see the head neurologist of the autonomic clinic. They are all great doctors, that know how to help me and when they need to pass me along to someone that can help me better they do. Plus they are all just cool people and give me great life advice. Having worked in the medical field for awhile, I can tell you with certainty that I am basically the best patient ever, not only because I'm super cool but because I am compliant and nice. Also I do this thing where I make slightly inappropriate jokes when the topic gets a little too deep, so people always like you when they think you're funny. (hashtag life hack)
Medications
If you've received a P.O.T.S diagnosis, you've probably also received a prescription or two.
Really there is no specific medication directly for the treatment of P.O.T.S. This is essentially because it isn't an actual disease, but rather a collection of symptoms rounded out into a syndrome. This is why people can have varying symptoms, and different underlying causes for the autonomic trouble.
Because of this, medications are prescribed basically just to control individual symptoms.
The basic symptoms of P.O.T.S are that you have high heart rate and low blood pressure related to your postural status.
Medications for treatment can include calcium channel blockers, beta blockers, or a handful of other pills that are used to swell arteries to slow down the blood flow.
When I was first diagnosed, I was given Fludricortisone, but it gave me pretty horrible side effects. So I then started Midodrine, which I have been on in varying doses ever since. My visit to Stanford last year also resulted with a calcium channel blocker to help lower my heart rate.
Your doctor may also try anti-anxiety medication to relieve symptoms. This is not because this is an anxiety issue, but because the symptoms are very similar to a panic attack and it may help relieve your cardiac symptoms.
Beware of drug interactions with whatever medication you are given! These pills do have a lot of over the counter interactions, so do a little googling before you take anything else. (also no live vaccines or cold medicines!)
A non medication help, which does require a prescription if you want to get them through insurance, are compression stockings. I have worn these (thigh high, 20-30mm) for the last four years. They help the blood flow better through the legs, and prevent and swelling or blood pooling in the legs. They are hot and uncomfortable and you will hate wearing them, but they are an easy way to help yourself out.
Also, get a pill organizer. Yes you'll loot like a pill popping old person, but taking medications eventually becomes this whole state of deja vu and you won't be able to remember if you took your pill that day or not.
Just trust me.
Nutrition
Water, water, water.
However much water you think you need, double it. Seriously.
A normal person should be drinking half their body weight in ounces of water every day, You need that at the very least. Water increases blood volume, which means there is more blood to flow around your poorly circulated veins. Coconut water is also a good thing to drink if you're into that, but I think it tastes like literal dirt so I don't.
Also increase your salt intake, which sounds silly since I'm about to tell you how healthy of a diet you need to be eating, but you need to swell up those veins.
I'm telling you, my first visit to the cardiologist felt like some kind of a joke when he told me start pouring salt on my food and eat more bacon. (also pickles and sundried tomatoes are a great source of extra salt)
You can also take salt supplements if you don't want to flavor up your food so much.
Besides that, you need to immediately clean up your diet and the way you eat.
No matter what, you need to get rid of any alcohol right away. Not only will this interfere with your medications, but it will dehydrate you and worsen other symptoms. The same goes for caffeine and sugar, as they can both increase your heart rate and blood pressure which are already naturally high enough.
You may notice your symptoms getting worse right after you eat a large meal. This is because your tummy is full of food and it is preventing proper blood flow through your stomach. So make it a habit not to eat incredibly large meals, but rather eat smaller meals more frequently.
As far as food goes, I'm not going to tell you you need to eliminate all gluten and dairy if you don't have a problem with it. You just need to remember that carbs have sugar and will bloat your stomach, so eating carbs infrequently should help you.
If you haven't already, have your doctor order a blood test to check all your vitamin levels and start supplementing if necessary. Vitamin D and all the B's are big factors in neurological health, so those need to be at correct levels.
Exercise and Rest
This one is a roughy.
You need to exercise and promote healthy blood flow, but you also will pass out if you stand up.
I was told to lay off exercise for several months after getting diagnosed, until my symptoms started to regulate. After that, I started off with low impact strength training and eventually started to gradually add in very low impact cardio. The problem with having an unnaturally high resting heart rate, is that it will only get higher with exertion. If it climbs too high, you have a very strong risk of passing out or more seriously a stroke or heart attack. Remember passing out is your bodies way of shutting down when it gets too stressed.
To help this situation, lay of the treadmill and hop on a stationary bike or rowing machine. Gradually build up your tolerance and be careful not to push yourself too hard.
P.O.T.S created this funny little science project inside me of how hard can I push right now, without pushing too hard and making it so I can't get out of bed tomorrow.
Which brings me to rest. You need it.
Nothing short of eight hours. Your body is working overtime all day just to function like a somewhat normal human being, so it needs more time to reboot at night. Which also means, if you need a nap during the day take a nap. It was a huge shocker to me how actually physically ill I now become if I get too little sleep, its not just about being a little groggy the next day.
Another little trick to ease symptoms at night is to sleep with a wedge or extra pillows to heighten your head. Your body wants to be laying down which makes it very unhappy in the morning when you stand back up.
Depending on what medication you are on, it might be necessary as well. For me on Midodrine, one of the side effects is raised blood pressure when laying down, so laying slightly upright prevents me from getting that issue at night.
Anxiety
I've said it once and I'll say it again, P.O.T.S is not an anxiety disorder, it is a disorder of the nervous system.
A normal anxiety response is not to feel like passing out every time you stand up. It doesn't give you migraines or leave you with a forever foggy head.
You may also have anxiety, but this is not it. Learn to tell the difference in your own body so you can know how to help yourself.
I have always struggled with anxiety, and I still do but developing P.O.T.S worsened it drastically. Although, I feel like it's less anxiety then just being worried over probable reasoning. If there is a 99% chance that you will pass out going to the grocery store, you have a very realistic reason to worry which means its not an irrational fear. Right?
The biggest problem I have is that I'll start to feel lightheaded and faint, then I get panicky about that fact that I'll pass out so then I get even more lightheaded because my heart rate spikes even higher which makes me more anxious.
The P.O.T.S life is just a series of vicious circles really.
Here are some tips to help ease anxiety about going out and about:
Get a medic-alert bracelet. Having something written on your person notifying whoever looks at it that passing out is not something to be alarmed over will help people to not be alarmed about your sudden demise.
Bring someone with you when you go out. If you should pass out, someone is there to splash some water on your face and keep anyone from calling a two thousand dollar ambulance for you.
I've more recently developed a who cares kinda of attitude about fainting, mostly because I've basically reached my limit of embarrassing things to happen to me so what's another notch in my belt. Before you go somewhere though, think of a plan of action if you do have a problem. My brain is notorious for coming up with escape plans no matter the situation, but pre planning what you might do or say in such a situation will help ease your mind.
I also carry around (not any more actually, because doing alright over here) a wrist blood pressure cuff. It is small enough to carry in your purse and check your blood pressure/heart rate when needed. I can't tell you how many times I've pulled this out when I am feeling horrible just to ease my mind. If the numbers line up fine then I will be fine. This is also a good idea to help you be aware of what is happening in your body at certain times. Test it whenever you feel a certain symptom to help you understand yourself a little better.
Positivity
I am not a positive person by nature.
I have struggled with depression my whole life and I naturally pretty negative about bad situations. Except when I'm making inappropriate jokes when things get too heavy.
The things that where on the internet when I first learn about Postural Orthostatic Tachycardia Syndrome, and the things the doctors where telling me where pretty negative things.
It was always the worst case scenario, because thats what I was. Constantly being told you are the worst case to be seen is not a prize worth winning and it only knocks your confidence even lower. This life is stressful.
It's hard and it sucks and no one can possible comprehend whats going on in your body. They can't understand that your not being lazy or antisocial, but that you physically cannot handle leaving your bed.
They won't understand that your brain feels like its swallowed in fog and you can barely think straight most of the time.
The won't see that it doesn't matter if you felt fine yesterday, or an hour ago, or two minutes ago but you don't now.
There is no predictability in P.O.T.S. there is no knowledge of what your life will be like tomorrow or next year or ten years from now. It is a mystery.
So just go with it. Live every day individually, but also for tomorrow. I live every day planning for the next day. I'm drinking enough water, eating right, exercising and sleeping right today so tomorrow I will feel alright.
Cycles, remember.
That all said, celebrate the little victories or you will go crazy.
I can still remember the first time I was able to take an actual shower, without having to sit down and wait out the storm. It was a very quick shower, but I was able to stand there and do all that I needed to do. I came out jumping for joy over such a small feat.
Another time I was able to sit through an hour of church without feeling faint at all, and I cried the whole way home because I was so relieved and excited that maybe things would be okay after all.
So celebrate when you don't pass out. Or you don't feel lightheaded. Notice when you go a whole day or minute without feeling like your eyes are closing in on you.
Don't let the bad days overturn your good days. So you had a bad day, its okay. Go to sleep and start over tomorrow. If you wake up feeling awful still, remember that it could still get better. I always feel worse in the mornings, so I take it easy and know that as the day goes on I will get better. (which means I also plan my activities knowing that the evenings are better for me)
How to Handle an Episode
I kind of hate the word episode but I don't know how else to simplify the time when you feel like your brain is swirling around in your head and your blood is pounding through your veins, and the world around you is spiraling smaller and smaller.
If you feel like you are going to pass out, sit down/lay down/get into some kind of position so that if you do pass out you won't fall and hit your head and add traumatic brain injury to your list of problems. Believe me, I've done it.
If you are sitting down, and are feeling faint here are some things to do to help:
-drink 16oz of cold water. The cold and the water should adjust your blood pressure.
-shake your legs a bit so the blood keeps moving. I also always sit with my legs crossed in some way, because my legs feel like lead pipes if I put them down on the ground. I dunno if thats a P.O.T.S thing or just a weird Carina thing though.
-Test your blood pressure, check your heart rate. By now, you should know how to check your own pulse. I prefer to check my own on my neck rather than the wrist, but either one is fine. Even if you don't count the pulses, know how to tell off the bat when it feels too fast or slow.
-Breath regularly. Don't try to take deep breaths, or hold your breath. Just breathe at a normal pace, and try to relax your body as best you can.
A couple tips my chiropractor advised me with are to tighten the muscles in your legs prior to standing up, and keep them clenched until you are standing. That will reduce the blood from dropping when you stand. He also suggested to go back and forth with hot and cold water in the shower to trigger a nervous system response or something like that, but I haven't found that to help me much. (and I'm too lazy to do it and we're in a drought, so)
This post has definitely won the award from longest post ever. Sorry about that.
When I said I was going to write a novel this year, I was not referring to a series of long rambling posts, but you take what you get.
Also rambling is a very special skill of mine, and who am I to deny my skills.
You can find all of the advised products here if you are interested, and feel free to comment or email if you have any further questions.
xoxo
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