Orthostatic intolerance can be a part of various health conditions. I was diagnosed with postural hypotension as a child, and further testing later in life resulted in a diagnosis of postural orthostatic tachycardia syndrome (POTS) (you can read about this here). Dealing with the inability to cope with orthostatic changes is definitely a trial and error process. Something that works for one person, may not help another person, and something that works for one person this week, won’t necessarily work for that person next week. That being said, I thought I’d do a post with 5 things I have learned (and the learning process is continuing!) that may help you.
1. Do not stay in one position for too long.
This can be a hard habit to break. For me, I still find myself sitting upright for long periods of time, only to pay for it for hours or days afterwards. It seems like a position of rest, but for those of us with orthostatic intolerance, it can be one of the worst positions to stay in. Blood pools in your legs (even worse if you are sitting on a high stool and your legs are dangling), your heart rate may increase, your blood pressure may drop, and your head may receive a decreased bloody supply. Needless to say, this can be uncomfortable, exhausting, nauseating, and potentially dangerous (if fainting/falling results). I invested in an electric recliner last year, and it was one of the best decisions I have made. It allows me to easily and gently change my position regularly, and I can go from a position that allows writing or eating, to fully supine (I just need to figure out a way of changing my position without disrupting my gorgeous pup, who loves to sleep on the extended leg support!).
Planning and self-awareness can help for situations that may involve standing for long periods. This is something I am still learning to deal with, especially in a social context. I so rarely catch up with friends that when I find myself in a situation where I am standing in a group talking, I don’t want to tear myself away from the conversation and fun to find a seat, or make a scene (for example, making everyone sit, or randomly sitting in the middle of a standing group!), no matter how desperate I am! I know that people will understand, but it is difficult. Ultimately though, looking after ourselves should be of upmost importance, so we must find a way.
It is also important to change positions regularly, because the alternative can result in deconditioning, and can worsen the symptoms when you do eventually move.
The most obvious tip is probably to change positions slowly (if I had a dollar for all the times that people have made out that all my condition came down to was standing up slowly, I’d be a rich (but still debilitated!) person! It can help to allow your body as much time as possible to accommodate the change in position.
2. Stay hydrated, eat small portions regularly, and increase salt intake (under doctor’s supervision). Medication may also be an option.
Maintaining hydration and salt intake results in better blood volume and blood pressure. Eating large meals can result in blood pooling in the stomach area, resulting in hypotension and syncope. It can also increase tachycardia in conditions such as POTS, bringing on symptoms of fatigue, racing heart, syncope, blurred vision and nausea. Meals should be small and frequent, and lower in carbohydrates. There are also a wide range of medications that can assist, however some may work for some people and not others, or may make some people worse. Find a cardiologist or neurologist who is experienced in your condition and explore your options with them.
Contracting muscles (particularly below the waist) for about 30 seconds at a time can assist blood to return to the heart through various biological activities, and can decrease blood pooling. This may help to maintain blood pressure in situations of orthostatic intolerance and stress. Try raising your toes off the floor, crossing legs and contracting, clenching thigh muscles, slow marching on the spot, or elevating your legs. Raising the head end of the bed by about 10cm is said to decrease nocturnal hypertension and diuresis (urine production), and orthostatic hypotension may reduce due to a possible increase in vein tone and ability to dilate or constrict.
That dreaded word that makes people with orthostatic intolerance quake! This can be very tricky to navigate, particularly when considering other health conditions and symptoms that often accompany orthostatic intolerance. My recommendation is to see an exercise physiotherapist (I have written about my experience here). They specialise in providing fitness plans for people who need all sorts of adjustments and support. For me, I focus on leg strength so as to assist my muscles that pump blood back up my body, in an attempt to reduce blood pooling and hypotension. I also find that for me, my legs are very weak and it is potentially dangerous because frequently through the day when I become light headed or dizzy, I find that I stagger more than I would if my legs were strong. I also want to increase my cardio fitness in the hope that it will make me feel better overall. It is a very slow process with fatigue issues and all the symptoms I have, but persistence and professional support is key.
5. Learn your triggers and symptoms.
This may seem simple to a bystander, but when you experience multiple symptoms throughout the day as I do, it can be very, very hard to pinpoint what each is linked to. I recommend jotting experiences down in a notebook so that you can start to see common links. I have just bought a heart monitoring wrist watch, which is helping me to notice when my heart rate is climbing, so that I can encourage myself to change my position early, before the symptoms start telling me. Start really listening to your body. Do you have symptoms after eating? How does heat affect you? Do you feel worse in the mornings, due to orthostatic hypotension, unmedicated tachycardia, and prolonged recumbency? Note how you felt after one type of exercise compared to after a different type. It all will slowly add up to give you an overall picture, and you can break it apart to reveal the clues that will help you help yourself.
It’s never easy to pinpoint the triggers and the symptoms as there can be multiple sources and no two individuals display the same triggers and symptoms. As you did, it is important for a patient to do the due diligence to identify the exact triggers and take precautionary measures.
John Gatesby recently posted…Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS)