Sleeping with POTS

It has been six years sense I have been diagnosed with POTS, and I think I have done a pretty good job at managing all of the crazy changes it makes to my life.

One aspect that is not talked about a lot when it comes to POTS is how difficult it can make sleeping. To help shed some light on that, I thought I would try to give some insight into what it is like for me to sleep with POTS. I can only speak to my experiences, and they may not be the same for everyone. If you experience any of the same things, or any different struggles, I’d love to hear about it!

Before I even think about going to sleep I have to take my night medication. I take birth control, to help with my severe period pain, and a preventative migraine medication, both of which have to be taken before I can fall asleep. Once that is out of the way I am ready to go to bed.

I make sure that there is water and something to eat beside my bed, along with a plastic bag. The water is for when I wake up thirsty which happens about twice a night. The food is for when my stomach pain wakes me up. I have found that eating something can sometimes help. The bag is for when I wake up sick and can’t make it to the bathroom.

You may have noticed that all of these things wake me up, and that is a major part of my sleep with POTS. No matter what I do before bed to try and prevent it, I am always woken up at least three times during the night because my body needs something. If it is just water or a bite to eat, then I can usually go back to sleep fairly quickly. But if it is something more demanding, like stomach pain, it can take me up to an hour before I fall back to sleep. This is because either I get sick, or have to apply pressure to my abdomen for an extended period of time.

Another aspect of sleep when you have POTS is that once I am in bed for the night, I can not walk or really move anywhere unless I take my morning medication, which prevents me from lying down. Part of my treatment for POTS is taking a beta blocker and a vasovagal constrictor when I wake up, and every 5 hours after that. These medications help me to stand, and move about with less risk of falling and blood pressure drops. When the vasovagal constrictor is in my system it can be dangerous for me to lie down, so I do my best to avoid doing so. This means I am not on those medications when I sleep, so if I have to get up and do anything I am crawling, or scooting along the floor. I used to try and walk, but got tired of passing out every time. I give up this little piece of my dignity for safety.

As I previously mentioned, I take a beta blocker during the day, but not at night. The beta blocker helps to control my heart rate. A symptom of my POTS is random heart rate spikes. This means when I am lying in bed, literally doing nothing, my heart rate can go as high as 130 beats per minute. This can make it hard to breath, and comes with an intense feeling of anxiety. To cope I try and take deep breaths and avoid placing my arms over my heart. For me, being able to feel my racing heart makes the whole episode worse. As you can imagine, it is quite hard to sleep when your heart thinks you are running.

Blood pooling is another issue that I have to deal with when sleeping. For me is is generally from my knee down on either leg, and sometimes both at a time. It feels as though that part of my legs is full of fluid, almost to bursting. They feel tight and stiff. The pain ranges from mild, where I can elevate my feet and am able to sleep. To severe, where I am massaging my legs, putting ice on them, elevating my feet, and there is still no relief from the pain. It is on those bad pain nights where I question if I will be able to handle this condition for the rest of my life, but thankfully they have become fewer and farther between.

The other side to blood pooling is when I put my arms above my heart for more than five minutes, say if I were to fall asleep like that, they go numb because all the blood drains away from them. I have woken up completely unable to feel my arm and hand from my elbow down. Usually my body will wake me up when this happens. At first this is terrifying, and I have a mild freak out, but after so many years I’m used to it and just massage the blood and feeling back into it.

Another part of my POTS is migraines. When trying to sleep with one I found that if I am cold and put ice on my head I can sleep easier. Generally I will wake up during the night to be sick, and have to chug water, but I have been lucky and my migraines only last 24 hours. So, knowing that the pain will eventually be over is enough to help me get through those rough migraine nights.

As you can see, sleeping with POTS can be it’s own challenge, but the longer you live with it the more you will learn works for you.

If you were recently diagnosed, some advice I have for you is to not be afraid to try different things. It took me a while to figure out that eating something helped with my stomach pain.

 

~Maddie

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Learning to Drive at 21

I am working towards getting my drivers license for the first time at 21. There were a lot of factors that lead to me waiting this long.

When I was 16 and all of my friends were getting my their licenses, I was getting diagnosed with a chronic illness called POTS. I had been dealing with symptoms for years prior, and at the time, I was feeling sick even when I was sitting. My cardiologist suggested that it would not be safe for me to drive until we got my health under control. That took about a year.

Another obstacle is that I used to have a huge fear of driving. Even if I was a passenger in the car, I would be anxious and nervous for the whole ride. It was something that I’ve had to work through, and slowly over time I have become more comfortable in the car. When it came to driving, my dad taught me the basics when I was 16, but at the time I would be so anxious when driving that I could barely drive for more then ten minutes. I would avoid chances to drive, and put it on the back burner.

There really was no need for me to drive when I was in high school. My dad was retired, and my grandmother lives very close to us. Everyone was willing to give me and my brother rides to where we needed to go. I was having trouble in school, and my parents really wanted me to focus on school and my health. I am forever grateful for their support and help throughout it all.

After high school I went to college half way across the country. I loved school, and every thing was great, except I wasn’t home long enough to work towards driving, and I had no way to work towards it in college. Years went by, and at 20 I got my permit in the state I went to school at. A year later I renewed my permit and began working towards driving.

Now, I am home and am driving as much as I can. When I go back to school soon, my boyfriend and his family are going to help me get my license. Every time I think about it I get emotional. This represents me being more independent, and being able to help those I love.

It may have taken me longer than most, but I am getting there. This is something I can do now. If you are in a similar position, know that you aren’t alone. You’ll get there one day.

 

Maddie