- CASE FILE
I live everyday with a fear that it may be the last time I see my children. At times it feels as if my entire body is failing me.
ABOUT THIS CASE FILE
I am seeking help because I have not gotten any clear answers why I am having these symptoms and none of the medications tried have fully helped. have various episodes that typically happen after I eat causing a fast heartbeat, low blood pressure, occasionally during an episode high blood pressure, nausea, diarrhea, vertigo, feeling like I am going to faint, palpitations that feel like someone is scooping my heart out, tight sensation in my neck, a numbness feeling in my mouth (feels what I would imagine anaphylaxis would feel like if I was having an allergic reaction to foods), depending on how bad the episode is I will also have full body tremors. The foods this happens with is not consistent. It can happen one day when I eat strawberries but a week later I can eat strawberries potentially just fine. I have been tested by allergists for food allergies but I was not found to have any food allergies. Some days just drinking water can create these episodes. These episodes can also happen if I get too tired, if I am overheated such as being out in the sun too long or simply just laying under a blanket too long and get too warm, if I am around too much sensory stimuli such as being at a party with a lot of music, lights, people talking, etc. I have horrible brain fog as well. I also have episodes where it feels like I have the stomach flu. It seems to cycle but no apparent pattern such as every 2 weeks or every month or during a full moon. Also, no apparent pattern as far as the type of foods. It simply could be drinking water, or eating bland rice could make me nauseous, vomiting, diarrhea, etc. I am 37 years old and have Osteoporosis and my cycles are off. I was told at one point I was in menopause and would never have a cycle ever again, then the next month my periods came back and they said my levels were completely normal.
These issues have significantly affected my life. I have a difficult time making plans to do anything because at the last minute I may have an episode. Or if I do make plans I have to make sure its a short duration allowing me an easy way to go home if one of these episodes should occur. It makes it difficult for me to work and do things with my kids. Many times we will have to stay home because I am not feeling well. At one point I wrote goodbye letters to them because I was barely able to drink water without having an episode. I lost so much weight that I was sure my body was going to start shutting down.
I have seen so many doctors; rheumatologist, hematologist, cardiologist, electrophysiologist, neurologist, pulmonologist, gastroenterologist, allergist, gynecologist, endocrinologist. I have had lots of blood work done, MRI’s, autonomic function testing, holter monitors, implanted holter monitor, stress test, glucose tolerance testing, allergy testing. Most doctors tell me they will say they think that I have a rare disease that they just don’t know about right now and that maybe I should go to Mayo Clinic. My insurance does not cover Mayo Clinic and so it is not possible for me. I would love to live one day not to be afraid to drink water, or eat a meal with the fear that at any moment I could have one of these episodes. To be able to enjoy the time with my kids instead of living in fear everyday that at any moment it could be my last breath with them. Since I have no clear cause with such horrific symptoms which causes such great anxiety. One allergist gave me an epi pen but since we don’t know for sure if I am having an allergic type reaction I am hesitant to use it during an episode as I was told by cardiac doctors that it could kill me if it’s not due to an allergy and due to some sort of rare heart condition. But if it truly is an allergic reaction (even though testing shows its not) and I wait and I don’t take the epi-pen I could die. Currently during an episode taking antihistamines do help as well as drinking ice cold water, sticking my hands in ice cold water, and rubbing ice on my face, arms and legs constantly, while closing my eyes and trying to breath. But after the episodes I am completely drained and it takes several days to recoup from one episode. One day I had an episode once every hour. That took me months to recover from. During that time period I was unable to do anything but walk from the couch to the bathroom. This is not anywhere near a panic attack as I have had doctors question this also. I have had anxiety in my life and this is not even close to an anxiety attack. I am hopeful that I will have a diagnosis before it is too late. I have exhausted all efforts that are covered with my insurance.