Episodic Events-Gastroparesis, SIBO, POTS, EDS
I was diagnosed with POTS, EDS and Gastroparesis and SIBO over the last 5 years. (They are still checking for MALS.) In December of last year when I was getting full on spoons of soup. I went on a liquid diet for a few days and soon after my lower jaw would “pull” after eating or before a BM. Then it became both jaws, then pressure around my temples, facial numbness, slurred speech and confusion. It would all subside within about 5-20 minutes. (I decided to call these “episodes.”) Today the “episodes” have become worse. They occur just about 2-3 times a week and can last up to 8 hours. I also get chills, back and neck tightness, dizziness, confusion, I feel very sad and then suddenly lights are too much, any tiny noise is super loud. I become very short of breath and very weak to where I cannot talk and can hardly take deep breaths. (It feels like I cannot breathe deeply in and am going to pass out, but I do not.) Everything is “too much” to handle during these events. The only warning sign that an “episode” is coming is dizziness and lightheadedness or shortness of breath….then the cycle of all the symptoms begins until I cannot breathe deep and am sitting completely weak. Once it passes I can breathe deep and the dizziness goes away as well as the chills. I stay pale in color for a while, but the confusion and tightness in the back and neck cease. I am just very very tired after. These usually occur early in the day between 10 am and 3 pm also after a bowel movement where I have strained or when I have had more than one BM. It also seems to occur when I try a different food or if I am stressed. Water and liquid protein help to an extent.
I have also been tremoring through the night…stomach, hands, legs….all with crazy heart racing. This began with very little tremoring-maybe once every month for about 20 minutes or only early mornings. Now it occurs every night from the moment I lay down and lasts until morning. I am also very low in energy. I get about 1-2 good hours a day and then that is it. I have to rest or I will become weak and tremor. I have to have protein every 2 hours to keep my energy up. Hospital did brain scans, bloodwork, ekg’s, a swallow study, abdominal and pelvic scans, EEG (non-video)…then released me saying all was clear and there was nothing they could do for me. (I could not even stand because I was so weak.) Neurologists say all of this is not related to neurology. POTs doc says it doesn’t sound like POTs. GI doc says it is not GI related. I am at a loss and very frustrated. These episodes come out of nowhere and I am alone at home. They are very scary. Can anyone relate or share insight? I have been told it could be mercury toxicity or overload of bacteria in my intestines not allowing me to eat anything different. I am hoping to find help.