Mayo Clinic Day 6 (Last Day)

Today was my last day at Mayo Clinic. I got my results from all my tests and I definitely have POTS and chronic fatigue. From all the blood tests, it was found that my iron is low so I have to start taking iron pills to see if they help the cramping in my legs. From the overnight oximetry test my oxygen levels were normal, but my heart rate was extremely high. When I am sleeping my heart rate gets around 115bpm, which ends up causing restless sleep. I am hyperactive at night and am in “fight or flight” mode, which is causing my heart rate to get high and causing my insomnia. I end up not getting proper sleep, and I do not reach Stage 4/REM sleep, so during the day I get foggy and I go into stage 1 of the sleep cycle without even knowing it (that explains why I don’t remember conversations, chunks of class time, etc…). To lower my heart rate, Dr. Fleming changed my beta-blocker and if the beta-blocker doesn’t help me get sufficient sleep, I have to start taking a sleeping pill. My tilt table test was also abnormal since my heart rate spiked at a 70^O angle. This confirmed my POTS since it showed signs of orthostatic intolerance. Since my heart rate gets high, the echo and EKG were necessary to check for any damage or abnormalities in my heart and both tests were normal (finally a normal test!!).

The thermoregulatory sweat test came back abnormal. The doctor was shocked that it did because he has only seen abnormal results four other times in the past. Parts of my arms, thighs, and feet do not sweat, which points to about 26.2% nerve damage. I have to be extremely careful in the heat because I am incapable of cooling myself down since I do not sweat. I may need to get a nerve biopsy to further investigate this issue. Also, in a year I need to do another sweat test to see if the nerves are rejuvenating themselves, are the same, or if there is further damage. Before I left the clinic, I had to do a paraneoplastic antibody blood test to check to see if the reason for the nerve damage is autoimmune. If this test comes back abnormal, I could possibly have a disorder such as ganglionopathy, but further testing needs to be done. He suggested carrying a fan around, which I already do, and using a spritz bottle when I work out to help cool down. I also have to find a neurologist that specializes in the autonomic nervous system to take care of this problem.

He said that the POTS has caused central sensitization syndrome. My central nervous system (mostly in the area of my brain that controls autonomic functions called the limbic system) does not process sensation properly and overreacts to different sensations. When something is painful, it is significantly more painful because of this sensitization. When I was having terrible stomach pain whenever I ate in the fall, my stomach nerves were sending signals to my brain that the food was painful. My central nervous system has regulated itself into a hyperactive state so everything is more extreme for my body. Another system that is being affected is my vestibular system in my inner ear. My vestibular system coincides with the autonomic dysfunction and the central sensitization syndrome and causes my dizziness.

            Adapting to POTS is the only way to get a handle on your life. Some remedies, besides prescriptions, Dr. Fleming suggested was to wear support stockings, compression shirt/shorts, and/or an abdominal binder. These garments can help with blood pooling in my legs and stomach, the only problem for me is I have to be careful that they do not cause me to overheat. Salt and fluids are also two therapies that are necessary. I was only taking in 2-3 grams of salt a day, but Dr. Fleming recommended taking 10-20g of salt a day especially since my sodium levels were on the lower side (I guess I wasn’t adding enough salt to my pizza every night). Some suggestions for increasing salt intake were thermotabs, sodium chloride pills, and adding table salt to food, sports drinks and pedialyte. Also, I need to drink about 2-3 liters a day. He suggested using Nunn Active Hydration Electrolyte Enhanced Drink Tablets, which is added to water and is high in salt and electrolytes. Another recommendation to help with increasing fluids and also helping with standing for longer periods of time are water boluses. Water boluses are when you drink 12-16oz of water quickly at one time before an upright activity because it helps increase blood pressure and lower heart rate. To get the most out of water boluses, you need to do it 3-4 times a day, and they tend to be more helpful than sipping water. Some positions that can help with blood pooling and lightheadedness is crossing legs, bending forward, and engaging leg muscles. By engaging leg muscles, the blood pooling in your feet/legs gets pushed back to your heart and redistributed throughout your body.

            The best way to subside symptoms is exercise. It was suggested to do at least 30 minutes of cardio a day, and cardio can be the recumbent bike and swimming. It is also suggested to do weight lift training 2-3 times a week. Leg exercises are the best form of weight training for POTS patients because it helps prevent blood pooling. Some exercises recommended were yoga, leg presses, toe presses, leg extensions, and leg curls. As an exercise routine gets easier, it is necessary to continue to increase weight and resistance, and keep pushing yourself. Some other recommendations I was given to control my heart rate was deep breathing exercises. Deep breathing helps to lower heart rate and makes your body relaxed. When your body is relaxed it helps to get out of the “fight or flight” response and taps into the parasympathetic nervous system. Some videos that Dr. Amit Sood has uploaded to YouTube were also suggested (Calm and Energize: A Meditation With Your Breath). Meditation is a great therapy for POTS patients because it helps to calm down the sympathetic nervous system and help to get control over symptoms.

            The past ten days have been long and exhausting, but definitely worth it. I have learned a lot more about the causes of Postural Orthostatic Tachycardia Syndrome and different ways to control it. Through this experience I have learned a lot about my body and why it is reacting abnormally. It will be years till I am better, but with time, patience, and these different therapies I will be able to control my symptoms and be better. Some symptoms may never go away, but with autonomic dysfunction you just have to learn to adapt, and live life to its fullest with the symptoms that are present. (If you ever go to Minnesota or the Mayo Clinic, definitely check out the Eagle Sanctuary and Mall of America…GREAT SHOPPING!! J)