Hi there, I read through most of these pages and thought of sharing my struggles in hopes to get advice, feedback, or guidance. 26F, 5'5, 150lbs
My symptoms, in detail:
I sigh multiple times a minute gasping for air (3 times on average). 1 out of 10 sighs I take feel like I got air inside my lungs. I sigh while sitting down, laying down, relaxing, walking, talking, and especially after eating. It is lowest when I go to sleep at night and start again badly 40 minutes after I wake up – but it is 24/7. I get sore in my upper lungs and upper back frequently during the day when attempting to get air in. I do not struggle to breathe out (I know what asthma feels like), I struggle to get the air IN, because it feels like there’s a barrier blocking the air from going through my throat (tightens) into my lungs. There are times I’m eating and choke on my food because I try to take a deep breath. My throat is sore, I do not cough, but do swallow saliva all day. There's time where it helps to stands or sit up to push the breath in.
I moved to Florida in 2012 after being raised in a brick/concrete house in the mountains of Madrid, Spain. Along this time, I took 8 months of antibiotics for a possible exposure to tuberculosis I had that ended up being false (x-rays). When I moved to the condo in Miami, which had mold in it, shortly after I started to feel tightness in my chest and dizziness that would make it incredibly uncomfortable to walk on the beach along the shoreline.
On 2013 I moved to a college dorm and got rashes everywhere (Dermatitis Hepertiformis). Turned out I have Celiac Disease and adhered to a strict GF diet where I use a portable tested to make sure my food has under 20ppm of gluten. My shortness of breath happened mainly outside in the heat and humidity and inside with the sensation of “missed yawning.”
On 2015, I moved to a different, older building and noticed thick postnasal drip accompanied with severe chest tightness. This was around the same time I started the low-progesterone birth control pill. On 2016, I went back to live with my mom at a condo in the beach and had extreme episodes of tightness in my chest, sighing and not getting a breath in despite multiple attempts including a sore back and lungs. Upon going to the ER, oxygen was normal, X- rays normal, the one thing the Dr. noticed was a lot of mucus running down my throat.
Later, 2016, I went through an endoscopy that came out with severe burns in my stomach from acid & was put on antibiotics for 5 months and continued with Omeprazole for the next couple of years until I moved to Colorado. Moreover, I went to a ENT who looked at my Vocal Cords and prescribed speech therapy for Vocal Cord Dysfunction. Some of the exercises I apply today. The measured success rate is the following. Note that -1 represents an attempted breath, 0.5 a half breath, and 1 a breath that feels satisfying.
2:10pm 0.5 (with speech therapy exercise)
However, it is not reliable each time:
2:20pm 1 (breath taken without speech therapy exercise, mouth wide open)
2:21pm 0.5 (breath taken with speech therapy)
2:21pm -1 (breath taken without speech therapy exercise, mouth wide open, sore in back and lungs)
2:22pm -1 (breath taken with speech therapy)
On 2018, I decided to move to a cold, dry climate in Colorado. This helped about 20%. Then, I started seeing a holistic doctor and tried a low histamine diet, eliminating foods I’m intolerant to such as eggs, corn, lentils and tomatoes (through IGG blood tests) and antihistamine supplements like Quercetin and Cromolyn Sodium as well as moved out of moldy homes into new ones and tested them for mold. I felt a change in my energy levels but still struggled immensely with not getting a breath in. And nothing, no change after 1 year and a half of following this rigorous plan. Not even with the lowest histamine foods such as air fried sweet potatoes with salt and nothing else would help my breathing. I still gasped for air. I also had severe IBS episodes, one resulting in an ER hospital visit where I needed 7 bags of fluids because of how dehydrated I was.
On 2021, I did a sleep study that appeared to be normal. Then, had a heart monitor on my body for a full month and they saw some arrhythmia with my heart speeding (there was one result where it went to 130 in middle of the night) but the doctor deemed results as normal and moved on. My heart ultrasound appeared normal as did my gallbladder. Blood tests appeared normal all these years aside from inflammation markets that are quite elevated and at times a white cell count that was elevated.
Recently, 2021, I went to a Pulmonologist. When performing breathing tests, he would ask me to “breathe normally” after multiple failed tests until I forced it down and the results show no abnormalities. Also, a CT scan indicated my lungs are inflamed. I went to the Gastroenterologist and again, acid results. The normal scores should be 14, and I’m at 24. I have been taking Pepcid twice a day since then (a month ago) but have no visible results. I still sense my throat closing sighing 3-4 times a minute. I tried taking aspirin and it seemed to alleviate but not long term. I also take a steroid inhaler named Symbicort twice a day, and it helps, but again, not enough. It is still so, so bad I have a need to grip to furniture and push to help my lungs receive air.
My current medications include Pepcid / twice a day, 2 aspirins/ twice a day, Reactine /twice a day, Symbicort /twice a day , and Claritin nasal spray, hydroxyzyne 2 tablets before sleep. Some of these medications are Canadian as I am currently visiting Montreal, Canada and got about 10% worse than in Colorado. The building i'm staying does not smell moldy and was built last year.
Nothing has really alleviated the problem. I feel desperate. Insights welcome. Thanks
PD. Oh... and for those that believe in alternative stuff... I have a positive Lyme disease test suggesting chronic lyme and mold toxicity illness. On 2020 I did the Double Dapsone protocol for 3 months without antibiotics.