Life with POTS
people with POTS and IST (innapropriate sinus tachycardia) have been said to have the same quality of life as patients on dialysis for kidney failure
FAQ:
What is POTS? POTS is a form of disautonomia, a disorder of the automatic nervous system, your heart rate will be high even if you’re just lying down, exercise will get your heart rate into the 200’s, your blood pressure will drop, you can faint, your digestive system doesn’t work right, ect.
Do you have to faint to have POTS? No! Contrary to popular belief, only about 30% of pots patients actually faint! I have fainted three times with POTS but I face pre syncope much more often than I do actually fainting.
How do you treat it? And can you get better? POTS was first discovered in the 1940’s but unfortunately as it primarily affects women, it was passed off as anxiety due to the high heart rate. Soldiers during the civil war often had pots as well so it was called “soldiers heart syndrome”, and later because women have smaller hearts than men, they called it “grinch syndrome” because they thought it meant your heart was too small. The term POTS was only adopted In 1993. Because of how recently pots was not only found, but slowly started to be taken seriously (even today some old fashioned doctors don’t believe it exists and claim it’s anxiety!) there isn’t much treatment, I take beta blockers, salt pills, and various other medications to treat my pots but unfortunately, because it is a chronic illness it will never go away. And sometimes I still have bad flares even with my medication!
If someone around me is having a pots flare, how can I help?
Sodium helps and so do electrolytes. Water with liquid iv in it, Gatorade, flash IV, a bag of chips, a pickle, ect. Are all things you can give a friend. Make sure they are hydrated! Lift their feet to be above their head as people with pots often experience blood pooling. Our brain doesn’t get enough blood and this helps! And if they faint simply stay with them until they wake up. Keep them cool as heat can make symptoms worse!!
Compression also helps so compression socks are a great gift for a friend with pots.
If you have any more questions feel free to ask in the comments!!
Postural Orthostatic Tachycardia Syndrome (POTS) is a condition affecting the autonomic nervous system that can leave individuals feeling unwell and fatigued. Symptoms can vary widely but often include rapid heartbeat, particularly upon standing, and episodes of dizziness and fainting. Given that POTS frequently affects women, it often remains misunderstood or misdiagnosed, which can exacerbate the difficulties faced by those who suffer from it. Awareness has grown since POTS was recognized in the early 1990s, prompting better research into effective treatment methods. Managing POTS typically involves a multi-faceted approach. Patients often find that increasing fluid and salt intake helps alleviate symptoms by expanding blood volume. Compression garments are also beneficial as they encourage better blood circulation. Exercise regimens tailored for POTS patients are crucial as well, even though the mere act of standing can provoke symptoms. Gradual increases in activity levels can improve tolerance over time. In severe cases, medications, such as beta-blockers, may be prescribed to manage heart rate and control symptoms effectively. Each patient’s experience is unique, requiring personalized treatment plans that consider their specific symptoms and lifestyle. Peer support and education about POTS can greatly enhance the quality of life for those affected. Connecting with communities, such as support groups, can provide emotional backing and valuable tips for daily management. Healthy communication between friends and family members is essential; understanding the symptoms can help loved ones provide timely support during a flare-up. Encouraging conversations around POTS can help to destigmatize the experience, allowing for better recognition and understanding of the condition.
