I have cried, laughed, and froze my way to the halfway mark. I even got the stomach flu over the weekend for an added bonus. I’m impressed with the efficiency, knowledge, and technology at Mayo. It truly is an incredible institution. Although there have been no new diagnosis or grand revelations, we have received clarity and direction on most things. Last week we wrapped up the cardiology, neurology and autonomic dysfunction portion of my care, concluding that I 100% have Dysautonomia and ruling out coexisting infections and syndromes such as Lyme Disease, Mast Cell, Ehlers Danlos Syndrome, and many more. This is outstanding news, and will allow me a better opportunity for a significant recovery.
One of our biggest successes has been our findings in neurology, as we have discovered that around 5% of Dysautonomia patients have a movement disorder that flares up around the time of onset, much like the “mystery convulsions” I have been having. These movements are called “non-epileptic spells”, previously thought to be “pseudoseizures” caused by repressed emotions and trauma. This terminology insinuated that these movements were “all in a patient's head” and were often treated by psychiatry, but in recent years researchers have discovered that within the autonomic context these movements are very real, uncontrollable, and not effectively controlled by medication, but not dangerous. They are essentially “a temper tantrum of you nervous system” and as other symptoms improve, they tend to subside and eventually disappear. I will be enrolling in Cognitive Behavioral Therapy and biofeedback for these episodes, which teaches patients deep breathing and meditation techniques to better manage them.
The biggest lesson I’ve learned, and something I previously mentioned in my last post is that there is no magic pill, and the only way out of this is going to be hard work. The foundation for improving Dysautonomia is upping your fluid intake, salt intake, and exercise. I have been hit on the head with the idea not to nap or lay down throughout the day, and to exercise, exercise, exercise five too many times. Mayo claims that medications (in most situations, not all) have proven not to be essential nor long-term effective in the autonomic context and are mostly used just so a patient can be upright and moving throughout the day, and saline IV infusions don’t show significant improvement (something I have previously tried and did not help). The less is more approach sounds extremely counterintuitive, but although the most challenging road, has proven to be the most effective. It makes sense how people become bedridden with this, just like I was for 8 solid months. The more you lay down, the more tired you get, the more your blood pressure and heart rate accommodate, and the harder it is to stand up, resulting in a vicious cycle of fatigue and pain. Also there is this idea that when you are sick, you want and need to rest, but too much rest only feeds into the worsening of symptoms.
The reality is Mayo admits Dysautonomia is extremely complex and not well understood, but it is so interesting it lends such a simple solution. Granted, although the solution is simple, it is by no means easy. For some people, exercise may mean walking up a flight of stairs. The idea is baby steps, and a gradual, slow increase in activity overtime. My main doctor gave me an estimate of about 2 to 3 year of religiously doing this in order to be around 80% of normal. But hey, that’s amazing. If I am able to function at 80% of what everyone else functions at, I am more than satisfied.
I am incredibly grateful and content with much of the information and direction I have received thus far, however, Mayo, like anywhere else, is imperfect. I have not been satisfied with the care of my GI doctors. Giving them the benefit of the doubt, they are keeping me an extra week strictly for GI testing where I will undergo an MRI of my stomach and a three day Gastric Emptying and Small Bowel Transit Study, but in my first appointment I did not feel like I was being heard. Given my GI problems are the most severe and painful part of my issues, I was not happy. Without going into too much detail, I will skip to the part where it gets good. I wouldn’t be myself if I didn’t report the head of the GI department at Mayo right?
The head of the department, an old white southern man, walked into the room during my appointment and immediately begin establishing his dominance by shutting down my thoughts and questions and telling me that colon hydrotherapy is dirty and he “doesn’t trust chiropractors.” He began feeling around my stomach with his bare hands to examine me. He then proceeds to ask in a very condescending way, mind you with his bare hands rubbing my bare stomach, “How do you feel about your body?” and “Do you think you need to lose weight?” I was baffled that I was being fired with the classic barrage of eating disorder questions at Mayo Clinic of all places. Regardless of whether these questions were routine or not, the timing of his hands rubbing my bare stomach was incredibly inappropriate, and made me feel violated. It didn’t help that it was coming from a condescending old man.
Despite this incident, I am going to give my GI team a fair shot and keep and open mind. After all, there’s always one rude old guy, and it would be unfair to discredit my entire team based off of one incident.
This trip has been one of the toughest and uncomfortable experiences of my life, but has proved to be rewarding. We have a long week ahead of us, but I am hopeful. After all, the only way out is through.