From August 2020 to the present day of 2/3/2021 I have seen a neurologist, pulmonologist, cardiologist, rheumatologist, gastroenterologist, immunologist, and otolaryngologist, and I seem to have hit a dead end. I have had a brain mri, heart ultrasound, heart mri, 2 chest CT scans, chest XR, I have been to the ER twice, abdomen CT, pulmonary excersise stress test, heart monitor, 3 EKG’s, 4 covid tests, 2 Endoscopys, I have had a large workup up blood tests for autoimmune diseases and other blood tests but I seem to be at a dead end.
I have had hyperthyroidism since July 2019, and my levels have been normal for a long time now. Although since July 2019 I have had fatigue, head pressure in head and forehead, and brain fog which have been up and down but has never really gone away. And have changed my thyroid medications multiple times, from levothyroxine, to synthroid, to cytomel, back to synthroid.
I most likely have celiac disease from blood tests that I have taken and I have been gluten free for about three months now.
I am 21 years old I used to be very athletic playing soccer and football for four years back in high school, I quit my job to go to a Bible college, but in July/August of 2020 all of my symptoms became much worse.
Today I am dealing with a feeling of pressure in my head and forehead, this never goes away it is always there 24/7, and it has been there for close to a year now. This pressure often keeps me awake when I am trying to sleep. This pressure can be light but it can also be severe and debilitating, but it never goes away. It feels like blood is being pooled in the front of my head, or like my head is swelling. I also now have pressure in my eyes even though I had my eyes checked back in august of 2020. I am also dealing with brain fog, difficulty thinking, and remembering things, difficulty speaking and finding words. I have a stiff neck, I am lightheaded and can be dizzy. I also still have some gastrointestinal issues even though I am gluten-free.
I am dealing with severe fatigue, malaise, and the feeling of muscle weakness throughout all of my body. The thought of standing up is extremely tiring. I often can not go on walks, or if I do I have to stop because of it. I can’t work or go to school because of it, standing is often hard and I quickly need to sit down. After sleeping for 12 hours I am exhausted. I have cold hands and feet even when it is warm outside. I also have occasional difficulty breathing, and feeling of burning when I breathe.
I also went to the ER because I had a possible POTS induced episode of hyperventilating where I had spasms, tingling, and numbness over my body and almost lost consciousness as I fell to the ground, with difficulty breathing.
I am currently just going to a chiropractor just in case a nerve or something is being pinched in the back of my neck. I sometimes have a numb neck, and I have neck stiffness, and my head feels heavy. I don’t know if I have CSF buildup in my head from sinus stenosis or from something else, I am not sure if I have Chronic fatigue syndrome or what is really going on with me. I would love to be able to get better soon! Mostly all of the speacialists that I have gone to don’t know what is wrong with me, so I am wondering what could be wrong with me. The head pressure seems to stand out and makes me think maybe I have CSF buildup, although there isn’t always sharp pain with my head pressure, it is better some days than others.
I am really scratching my head not only with the fatigue and other symptoms but especially with the head pressure because I haven’t read of a headache that lasts for a year and never goes away that feels like pressure.
I would appreciate any advice,
Thank you,
Sam.