- CASE FILE
9 years of medical issues that keep getting worse and doctors don’t know how to help me.
ABOUT THIS CASE FILE
In 2010 I started passing out during my high schools rowing practices and experienced pre-syncope as well. I went to a cardiologist who diagnosed me with orthostatic hypotension. He told me to drink more water and eat more salt but that didn’t seem to help at all. As the years went on the passing out got worse. I started passing out more frequently, sometimes with pre-syncope as a warning, other times I’d drop with no warning at all. Now it seems that I don’t have any warning signs when I do pass out. So I’ve hurt myself from the falls that happen from syncope. I developed severe fatigue, heat intolerance, excessive sweating, numbness in my limbs and face, and brain fog, along with double vision. The double vision is what got my primary care doctor to send me to a neurologist. When I saw the neurologist he was pretty confident I had dysautonomia (autonomic dysfunction) and he started doing a lot of tests to rule things out. He prescribed me Midodrine, to help with my low blood pressure and the passing out. It seemed to help at first, then quit working so the neurologist added Florinef on but then my blood pressure sky rocketed. We tried adjusted doses but at a lower dose, Florinef didn’t change my blood pressure, caused my headaches and chronic migraines to worsen, and I was still passing out many times per month. I got a loop recorder implanted to see what was happening with my heart rate when I passed out and all that came from that was noticing it increased a bit when I pass out.
But the neurologist didn’t know what was causing the double vision so he sent me to a neuro opthimologist who said it was diplopia. He prescribed me prism glasses and it helped but my eyes adjust to the prisms and the double vision keeps coming back. I also have and issue where my eyes hurt and become so fatigued when I use computers or laptops or tablets. They hurt really bad, I get a migraine and I’ve fallen asleep while doing work on my laptop. I’ve tried reducing blue light and many other things but the same thing occurs.
My fatigue has gotten so bad that I sleep 10 hours during the night and wake up still exhausted. I take 2-3 naps per day from 30 minutes to 2 hours. My neurologist gave me adderall to help the fatigue but all it did was make my heart rate go crazy. I got a sleep study done that didn’t show sleep apnea but I do fall asleep in 3.5 minutes or less, which the sleep specialist said was unusual, but I don’t go straight in to REM sleep like someone with narcolepsy would. He gave me Provigil which prevents me from napping but I feel even more exhausted because I cannot sleep and the fatigue is debilitating. The provigil also seems to make my GI symptoms worse too.
I’ve had IBS for many years now and it seems to be getting worse and worse as well. I have diarrhea 7-10 times a day (a lot of times it’s urgent and i have to hurry to the bathroom), I vomit at least once a day for unknown reasons, I’m nauseous 24/7 and eating makes it worse. I’ve had to stop eating many foods such as all meat, egg yolks, beans, and anything that causes gas because it increases all my symptoms, causes more fatigue and extreme gas and bloating. My GI doctor did upper and lower scopes (everything was normal) and has exhausted all tests and her knowledge. We’ve tried lomotil for the diarrhea and it stopped me up so much that I had to go to the ER and get an enema. She also tried me on many anti-nausea meds and they don’t seem to work. She said she didn’t know how to help me and is sending me to the GI department at U of M but I am still waiting to get in.
I also experience daily headaches and get 4-7 migraines a month. My neurologist has tried me on many different medications and nothing seems to touch my headaches or migraines. I’ve had to go to the ER many times due to the severness of my migraines. The migraines stop me in my tracks and I’m basically down for the entire day and sometimes they continue for a few days.
I’ve recently gone to a rheumatologist who diagnosed me with fibromyalgia, hyper mobility, and connective tissue disease due to my bone, muscle, and joint pain. I experience painful and sore skin as well as joint swelling and stiffness. We tried prednisone but I’m allergic to it, and she now has me on Cymbalta but it hasn’t helped with the pain.
I experience random rashes on my face, neck, and chest that seem to come about randomly. They are a combination of itchy bumps and red blotchy patches that turn white if I scratch them. I’ve gotten allergy testing but everything was normal. The allergist diagnosed me with idiopathic urticaria and put me on daily Allegra but I continue to get the rashes.
Every since I started my period it has been painful and heavy. I’ve had periods that lasted 4 weeks with only a few days with no period before the next one started. The pain of my periods are so bad that the cramps would go down my back and in to my legs. I shake and vomit due to the pain. I usually cannot move much when it gets this bad. After trying many birth controls that didn’t help I finally found an OBGYN that took my pain seriously and did and ultrasound that showed nothing, so she did an exploratory laparoscopy and found endometriosis and removed it. The periods got better for a while but it’s starting to get worse again and I’m bleeding through my birth control.
With all of these symptoms I had to drop down to part time in college and ask for disability accommodations. I was able to graduate with the help of understanding professors but the stress made my health much worse. I lost my part time job because I passed out during work, came in late because I would have to pull over due to getting dizzy or feeling like I was about to pass out,or would have to call off because I’d be bedridden due to migraines, fatigue, passing out, or numbness of my legs, arms, and face. I cannot work and have a hard time doing daily things like showering, cooking, cleaning, and laundry. My whole life has been turned upside down because of these health issues and no one seems to know what to do with me. I should be starting my career and moving on with my life but I am stuck due to all this pain. I just need to know if there is anything or anyone that can help me at all! Is there some underlying issue that everyone is missing?