Most medical advice about surviving life with postural orthostatic tachycardia syndrome includes or mentions ‘lifestyle changes’. It is inevitable for survival. I decided the best way to organize my tips and thoughts on this matter was through one page that included individual links to more information.
It’s all about finding ways to eliminate triggers. Triggers include anything that brings on POTS symptoms, whether those include fainting, weakness, dizziness, nausea, shortness of breath, or well… you get the idea. The whole goal is just to make life easier and it’s as simple as that.
Here are some tactics and techniques that I have used to combat the following triggers:
Dehydration– You need water and lots of it. 2 to 2.5 liters a day is recommended for a POTS patient. That’s over 84 ounces. I generally have between 120 and 150 ounces a day. To accomplish this I have water bottles and Gatorade all over the house. I keep water bottles near the couch and on my nightstand. There are times that I know I need water, but I also know I can’t make it to the kitchen. Additionally, I drink 24 ounces of water in bed each morning before getting up. For more thoughts on water and how to make it more interesting read With Great Hydration Comes…
Bending down– This is a big trigger for me. Bending over at the waist especially. The best option if you have to pick something up is to bend at the knees and squat rather than bending at the waist. For this reason, ask for help in the kitchen if you need something from a lower cupboard, especially a heavy something. I understand the desire to not have clutter on the kitchen counters, but heavy items should be left out on the counter. Avoid keeping dishes that you use daily in a lower cupboard. Because of these issues, the bend and snap is not recommended.
Climbing Stairs– Stairs are the hardest thing I do probably. For this reason I do my best to avoid them, however that can’t always be done. When I do have to use stairs I take breaks frequently and take deep breaths. If you live in a house with stairs think about things that can be rearranged or moved to reduce stair usage. It could even be something simple. In my house we kept the dog food and their dishes in the laundry room in the basement and moving them upstairs eliminated at least one trip on the stairs daily.
Lifting Objects- This is a trigger because it can increase stress on the heart causing it to beat even faster. Also, if blood pooling is occurring in the lower extremities, this reduces the amount of blood available to be directed to the muscles in the upper extremities. This may require some out of the box thinking. One problem I had was making coffee. I became really fatigued and tachycardic after filling the glass coffee carafe up with water and then pouring it into the tank which required holding it up for a while in the air. I finally realized that as long as my coffee pot was near the sink I could just move the faucet over and/or use the sprayer. I also had a hard time lifting up the dog water bowl. To point out, our dogs are essentially small horses, so we have a giant bowl of water. Besides when it needs to be cleaned out every day or so, it can be refilled just by again using the nozzle instead of lifting the bowl up.
Did you ever play video games where you could use ‘cheat codes’? I played the computer game The Sims for an entire summer once. We had a cheat code to get as much money as you wanted. We bought so many robot maids and cappuccino machines. Anyways, I think of this as essentially a cheat code for making life easier. So, this is my coffee cheat code.
I want to be honest. I was just about to move these dirty dishes to take this picture and then I realized ‘what am I doing?’ I’m going out of my way to express that it’s ok to not be perfect. Ok, so now you all know my secret. I have dishes in my sink sometimes. You see that dirty coffee cup? Yep, I drink coffee.
Arms above head- I know this is also a problem for a lot of potsies because the heart has to work harder to pump blood up to the arms. Again, you may want to readjust kitchen cupboards and make sure that items you use frequently are not too high up. This goes for dressing area and bathroom too. *Don’t keep your bath towels on a top shelf. Your body doesn’t need to go through the marathon of reaching a towel off of the top shelf and then showering!*
Showering– Showering is one of the most difficult tasks for me. The best advice I can give is to make sure the water is not too hot and make sure you have a shower chair or bench of some sort. You’ll need to rest and also leg-shaving-yoga (trademark pending on that) is much more difficult with dizziness, weakness and balance problems. In my shower I also installed a shower doorbell. You can read more about it here My Shower Doorbell I also always plan in time for my recovery after the shower. I generally lay flat on my bed for at least 30 minutes drinking water after my shower. Remember, your body just did a major workout.
Grocery Shopping– If I don’t have to get a lot of items, standing and leaning on a cart can help. If I need to be in the store wandering for a while, my wheelchair or the motorized store wheelchair are both good options. To avoid too much wandering I either write my list out in the order I will come upon items in the store, or use the Out of Milk app on my phone which organizes food into categories helping to reduce back tracking.
Eating Large Meals- As much as it seems like a great idea when you suddenly become ravenously hungry to eat a horse, the more you eat, the more likely blood is to pool in the abdomen area which can cause hypotension. And remember the recipe for passing out is hypotension + tachycardia. Also known as low blood pressure and high heart rate.
Heat– Heat dilates blood vessels and exacerbates POTS symptoms. I find I am much more heat sensitive than I ever used to be. Because of this hot saunas, hot showers, hot tubs, Jacuzzis, and steam rooms are all out of the question. Be cautious outside in heat. I have not gone through a summer yet with POTS, however I’ve read a bunch about regulating temperature. I bought a tiny fan with a mister that I use inside or outside when I get hot. I avoid direct sunlight (since I’m a freckled Irish girl anyways), and I drink a ton of water. I’ve read that some people use cooling vests or frozen water bottles to help cool down too.
Stress– I know, I know telling someone who is stressed to ‘STOP STRESSING’ works about as well as telling an angry woman to ‘CALM DOWN’. I get that. Do your part to find a calm and peaceful pace of life as best as you can and within your control. Beyond mental stresses though, physical stresses on the body also cause problems. Essentially those of us with POTS have autonomic nervous systems that are not functioning properly. The fight or flight process is all controlled through the autonomic nervous system. Some of us may already have an excess amount of norepinephrine (stress hormone) because of these malfunctions. Adding any stress whether physical or mental can exacerbate symptoms quickly.
Airplane Travel– Let me point out first that I have not done this yet since my diagnosis. However, I have read several studies and gathered info to share with you from dinet.org They recommend being extremely well hydrated before boarding and throughout flight since flying can be dehydrating to healthy people, even more so to someone who already has low blood volume. Compression stockings may be advised to reduce blood pooling in legs. Lastly the change in altitude and pressurization may cause hyperventilating which can obviously increase symptoms quickly. I will share more about my personal experiences after my first post-POTS diagnosis flight!
Another thing that I have found to be really helpful is not leaving the house without My Go Bag It helps me to feel prepared and confident to be in more situations and environments. It also gives me peace of mind that if I do pass out, all of my medical information and medications are in one place and can be easily found by paramedics.
Please don’t be hard on yourself. No matter how severe your symptoms are, you are going to have to make changes and lower your expectations. Be honest with yourself and others. My house isn’t going to be spotless (not that it ever really was) all the time. I may not look put together all the time. Oh, but when I do want to look put together, I use the item featured in this story I’m so Vain… I Probably Think This Song is About Me I may have to cancel last minute due to symptoms. These are just the facts and the sooner you can accept these changes, the sooner you can focus on happier things!
Find something to smile about and laugh about everyday! If you need help or tips with this, read Joy. Why? How?
Connect! There are so many great support groups on Facebook and Twitter and in the blogging community. I’m always here to help out or answer a question as best I can!
What lifestyle changes have you made? What cheats have you found? Please share!