Hello! This is my first time using one of these forums. I am on here as one of my final reach-outs to find some answers to a plethora of issues in regards to my health. I have been from doctor to doctor trying to find some answers, and I am now reaching out to online communities as I live in a very small state where it is difficult to find people with similar struggles. Let me begin!
In childhood I was diagnosed with RSV which resulted in Reactive Airway Disease, knowing that at some point in my life I would probably be hit with lung issues. I was also diagnosed with Migraines at age 11. As I got older, I saw a neurologist and my MRI came back normal. I was concerned about my MRI as it showed my sinuses were filled, but I was not sick nor had allergies of any kind. This was not a concern to my doctor, however. I was not put on any medication, just taking NSAIDS to minimize the pain (11 years later causing me severe erosive gastritis with internal bleeding).
If I fast forward several years, I am sitting at home after class and get a very strange sensation. My head feels like it is buzzing or shaking and my eyes do the same with blurred vision. In this moment I feel "dumb" and cannot speak or move, let alone breathe. My chest also felt strange with what felt like an extra forceful beat. This moment only lasted a few seconds and for the rest of the day, I felt completely exhausted. My speech was difficult for the rest of the day and I had extreme anxiety. I thought it was just a symptom of stress, as I lead a stressful life, so I carried on without seeing a doctor. This is until it happened about every 2 weeks for months. I then decided to see my doctor who referred me to a cardiologist. They put me on a Holter monitor and found only a "significant arrhythmia" which to them was minor. They did no further testing.
Soon thereafter, I was at a clinical session for nursing school and I began to feel strange. All of a sudden, I passed out on my classmate in the hall with the same symptoms that I had been having, only amplified. I went home and immediately called up my neurologist who I saw within the next couple weeks. He did an EEG, thinking seizures, but it came back normal. He diagnosed me with Hemiplegic migraines or complex migraines. This made sense to me, so I started to feel better about my health. He put me on Amitryptiline, but I was weary to try it due to the side effects.
I never ended up taking the medication because shortly after, I got my tonsils removed due to multiple cases of tonsillitis and my migraines completely ceased! This was so exciting to me, as I had been living with these almost every day for the last 11 years! I finally was able to stop taking NSAIDs and live without pain in my head. About a month later, however, at work, I passed out with all the same symptoms as I had had in the past. My brain and eyes shook violently, heart palpitations, and could not speak or breathe well. My boss made me go to the ER (thankfully I work at a hospital) where they did a head CT and found nothing. Everything came back "normal". They did, however, fail to notice my low oxygen levels, which was discovered by my doctor I saw for a follow-up. She immediately took action to test my oxygen levels, which lowered to around 75-85 as soon as I started walking around. These tests were done multiple times with different equipment, with similar results. At rest, my oxygen is fairly normal (the low to mid-90s).
This was just about 2 months ago and since have undergone so many tests to figure out the issue. My PFT showed an obstruction and ECHO showed a mild aortic regurgitation. She thought this still would not explain low oxygen and my other symptoms, but has referred me to a pulmonologist who I see next week. My chest CT showed a small 3mm nodule in my middle lobe but that was it. My bloodwork showed my c-reactive protein high and erythrocyte sedimentation rate low. Those were the only abnormal results that have come back.
As of now, I am on 24-hour oxygen and I wait to see a pulmonologist and will go from there. I believe I should be seeing a neurologist as well, but I am told by my doctor there is not much to be done in that department but another EEG with probable zero results. If anyone has any suggestions for me, similar stories, or any thoughts, it all helps. I am luckily still employed but struggle as it is a very active job and I obviously am very tired from the low oxygen. I have noticed since being put on the oxygen, I no longer have strange feelings of the floor moving underneath me that I had on occasion. I also feel less tired throughout the day.
Thank you for taking the time to read this!