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Constant Headaches, Breathing issues, memory issues, what is wrong?
It might sound crazy, but I am a 15-going-on-16 female with symptoms affecting my life, and I am terrified this is all in my head. I have constant breathing issues, constant tension headaches (centered around the back of my head and eyes), brain fog, memory issues, and my memory has gotten so bad I can't remember spoken words, at all. I can't remember parts of my days, and while I do have anxiety, I am starting to believe the constant pressure on my chest isn't from that. I am struggling so hard now and I don't know what is going on, and these symptoms started off really mild two and a half years ago and now have gotten to the point where it is becoming unlivable.
Notes on Medical History:
0. Have a chronic autoimmune medical issue that caused increased fight-or-flight (not MAST, doctors cannot determine it, genetic), but upped my medication for that, helped with the weird restlessness and back pain, but did not help with the breathing or other issues.
1. Genetic relatives with a history of thyroid issues, particularly hyperthyroidism
2. Have been diagnosed with potential arrhythmia of the heart when I was seven
3. Was diagnosed with GAD at 8-9ish (My memory has always been poor, but never this bad - I am missing 3 hours worth of memories at a time). Also have been diagnosed with long-and-short asthma in Australia (in America I was fine- where I was living in Australia, everyone has asthma), and no matter how many puffs of flixotide, Qvar, or Ventolin, nothing helps. Also got glasses for myopia, (oddly my vision improved after fainting, and on an interesting side note, my eyes are specializing, my left for short-range and my right for long-range.)
4. Fell on my back off of a swing after just turning 13, in April. I couldn't breathe for 30-45 seconds, and turned red, but was able to walk and talk totally fine, after I caught my breath, although my voice was a little strained. Back did not bruise but was sore for a few days afterwards.
5. In the end of June to the beginning of July of that year, I began noticing issues - I could not run as long or as fast as before. I couldn't get enough breath, which by the way, really, really hurts. My legs could move, but not my lungs. However, I also learned to swim during this time, and surprising, could swim with no issues respiratorily.
6. By December 2023, I could not run. I felt like I was dying, the pain was so bad, and my vision started tunneling. Memory issues began, and random back pain also began.
7. Memory issues many dealing with the comprehension of spoken words rapidly deteriorated, to the point at the end of 2024 I could not follow 2-step instructions, either because I was trying so hard to remember the first, there was no space for the second, or I forgot the first by the time I remembered the second.
8. Early 2025 after walking a lot, or dong exercise that requires respiration, about half-an-hour after doing the exercise my heart begins beating out of control. I can feel it just start to beat really fast, erratically, and hard, and it hurts. Additionally, at around this time, I have to start taking conscious breaths every 10 breaths, or I feel like I am beginning to suffocate and then I spiral. Also, if I am under too much stress, I faint.
9. Mid 2025 I cannot sleep through the night because I wake up having forgotten to breathe, and I begin to forget written words. Previously, written words I have had a near-photographic memory of, like to the point where I could recite a poem I read from memory. I could quote book passages.
10. August-November: Focus is a memory that is very faint. My grades suffer and I forget all the chores I need to do, and there is only about 3 per day. In addition, my lower back hurting becomes unbearable when I am tired, and after a while of sitting up straight, goes numb, which causes my legs to fall asleep. Fainting continues.
11. Late November-December - I increase my dose of Mirtazapine to 30 milligrams from 22.5. Back symptoms cease, as mentioned, and restlessness and phantom aches are less. Memory continues to deteriorate, and so does my focus, and my headaches and chest pain are near constant. Lying down does not improve the headaches, but it does the chest pain.
Further Notes: No x-rays, no tests, I have no idea where to begin, and right now I am concerned this is just me being overdramatic. Health insurance is not great, and we aren't rich, so I can't get it wrong.
I am so sorry for the length, but I thought it would be best to be as detailed as possible.
Edit: Forgot to mention COVID. I don't think I have ever gotten it, as I have been very careful (immunocompromised), and I have gotten Pfizer and Moderna vaccines, so I don't think it is Long COVID.
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First, never assume or believe someone else’s assumptions that it’s all in your head. You didn’t directly mention if you’re seeing a neurologist. If you are able (financially/insurance) see one right away…or get second/third opinion. Don’t know where you live but many area use an APRN system. Advanced nurses are, among other things, pharmacological experts, and can provide medication if warranted. For various reasons they often are more engaged in patients’ care, and more current on symptoms, treatments and multiple diseases. I wish you all the best.
Be specific in your prayer. Do some research and expect good things to happen. You'll get the help you need.
God has a plan for you. Stay positive.
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1 Reactiontfaperson1, very well presented medical information.
9 sounds like sleep apnea. https://www.droracle.ai/articles/60147/is-mirtazapine-remeron-contraindicated-in-obstructive-sleep-apnea-osa
While sleep apnea alone can cause memory loss "Mirtazapine-induced confusion may present in several ways: Direct cognitive impairment: Manifesting as disorientation, memory problems, or difficulty concentrating " https://www.droracle.ai/articles/356686/can-mirtazapine-remeron-cause-confusion
I am just guessing though. I'd probably start with a sleep study looking at sleep-apnea.
Bless your struggle with luck.
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1 Reaction@gently Thank you, but I think that is unlikely for it to be affected by Mirtazapine, because I have been taking Mirtazapine since I was 8-10 years old, and I didn't start having problems until thirteen. Additionally, Mirtazapine's primary goal is to help me sleep, and if I forget it, I definitely sleep worse. In addition, when I was thirteen I had a lower ratio of drugs to body weight than when I started taking it, as I started on 22.5 milligrams and only 2 months ago upped it to 30, and in that time period I have gone from maybe 70-ish pounds to 125 pounds. Hence, I think while sleep apnea definitely is possible, my medication likely is not an issue.
I have been known to make literal ghost sounds in my sleep, and one of my brothers whom also has my condition does not have sleep apnea, but has such an offset sleep cycle that specialists gave up. Apparently, he is five or six hours off schedule, and now operates on a 36 hour schedule.
I am starting to think it is insomnia caused by a thyroid issue, as hyperthyroidism could explain my difficulty concentrating, feeling of hunger, breathing issues, fast heart rate, and other symptoms. However, I am a little confused about the cold-sensitivity, as that is associated with hypothyroidism, but that could be because I always have needed to consume more food than the average child, and I simply have not been getting enough to properly regulate my temperature. I have though been experiencing increased sweating at the same time, and given that I grew a foot in four years, hyperthyroidism seems more likely.
Another point of contention is my blood pressure, which is rather low, but this has always been a problem for me, to the point that I consume more sodium than is generally advisable just to be able to not faint, which has happened on occasion.
Perhaps my pre-existing medical condition has caused an atypical presentation, although I would like to know if any of you have any other ideas of what could be causing it!
@floridaed Thank you! I really appreciate the support!
@westwoman3698 Thank you! I am looking into options, but as insurance does cause some issues, I am currently researching so I can narrow down the possible causes and eliminate some of the more common, but unlikely, tests.
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1 Reaction@tfaperson1 If you do decide to get lab testing for your thyroid, be sure to get a thyroid panel, not just a TSH. The results can be misleading. You want to know how much hormone is actually circulating in your bloodstream. So a free T3 & T4 will tell your provider that. You may benefit from some imaging of your thyroid as well.
(Retired RN with 50 yrs. experience)
You might have a mix of Long COVID , Post Vaccine Syndrome (PVS), and or Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and or other(?)
The last 5 years has taught me I have to do my own research and self advocate/ teach to doctors. I was caught by surprise when a couple doctors asked if they could copy my research - yes absolutely. After reading many research papers and watching research townhalls, I'm getting comfortable about areas that relate to my symptoms.
066 - New paper: The top treatments for ME/CFS and Long-COVID
Jarred Younger, PhD @youngerlab
This newly-released paper highlights the treatments reported as most beneficial by almost 4000 ME/CFS and Long-COVID sufferers. The open-access paper is here:
https://pubmed.ncbi.nlm.nih.gov/40627388/
Epub 2025 Jul 8. -- Patient-reported treatment outcomes in ME/CFS and long COVID
Abstract
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long COVID are persistent multisystem illnesses affecting many patients. With no known effective FDA-approved treatments for either condition, patient-reported outcomes of treatments may prove helpful in identifying management strategies that can improve patient care and generate new avenues for research. Here, we present the results of an ME/CFS and long COVID treatment survey with responses from 3,925 patients. We assess the experiences of these patients with more than 150 treatments in conjunction with their demographics, symptoms, and comorbidities. Treatments with the greatest perceived benefits are identified. (click website link to continue reading)
Figure 1, 2, 4 below
10/19/2023 Harlan Krumholz and Akiko Iwasaki (Rishi Shiah, Lilo Wu, and Adith Arun) discuss preliminary findings and answer questions from LISTEN participants.
https://medicine.yale.edu/ycci/listen-study/video/
The Yale LISTEN Study Town Hall: October 2023
The entire Town Hall is very interesting, here are 4 sections I found enlightening.
8:00 minute - Difference in Percent of Participants Experiencing Symptom (Long Covid – PVS post-vaccination syndrome; Note: the graphic chart below is informative)
Long Covid – Memory problems, Changed sense of smell, Brain fog, Shortness of breath, Cough, Sore throat, Excessive fatigue, Difficulty speaking properly, Changed sense of taste, Fatigue, Congested or runny nose, Phantom smells, Runny nose, Phlegm in back of throat, Headache, Constant thirst, Night sweats, Hypersomnia, Confusion, Insomnia, Hair loss, Dry scalp or dandruff, Dizziness, Throat pain or discomfort, Postnasal drip, Exercise Intolerance, Wheezing, Swollen hands or feet, Cold/burning lung sensation, Changes in voice, Phantom tastes
PVS - Loss of hearing, Suicidal thoughts, Feelings of impending doom, Palpitations, Tinnitus, Numbness, Internal vibration, Neuropathy, Burning sensations
16:00 minute - Implications
18:33 minute - Hypothesis
37:00 minute - Hope next 6 months
The Long COVID Research Consortium (LCRC) is a scientific collaboration led by the PolyBio Research Foundation aimed at rapidly studying and treating Long COVID.
https://polybio.org/longcovid/
The consortium project explorer let's you click body area, then pick Project to view Full Study.
https://polybio.org/consortium-project-explorer/
Click url link to read paper -
Long COVID involves activation of proinflammatory and immune exhaustion pathways
https://www.nature.com/articles/s41590-025-02353-x
Figure 1 and 5 very interesting.
Long‐COVID syndrome‐associated brain fog and chemofog: Luteolin to the rescue
https://pmc.ncbi.nlm.nih.gov/articles/PMC8250989/
Table 1, 3
This is a good paper educating on Pain - How a patient can explain to doctor and doctor to patient.
AN INTRODUCTION TO CHRONIC PAIN AND CHRONIC PAIN EDUCATION
https://ce4less.com/wp-content/uploads/2024/02/Chronic-Pain-and-Chronic-Pain-Education-to-Pilot.pdf
My Neurologist recommended many medications and vitamins. Magnesium Glycinate 400mg and Riboflavin (Vitamin B2) 400mg before bed, helps the brain and sleep.
I also found supplement- Ashwagandha 300mg 2x/day (lowers stress by lowering high cortisol, which could improve sleep – it goes back 2500 years). I fall asleep 10 minutes or less, my problem migraine wakes me up in middle of night.
In the back of my mind, it still seemed like I was chasing symptoms and not addressing root cause – what changed after getting Covid (now long covid), PVS (post-vaccination syndrome) , ME/CFS . My recent research, I came across “Immunology” (cell level). The more I researched, I came across Dr. Akiko Iwasaki of Yale School of Medicine/ Immunology and Dr Jarred Younger University Alabama Immunology. Things got interesting real fast. I now have a referral to see an Immunologist.
Note: This is not to imply don’t see Neurologist, she has helped a lot, but what I have might be cell level stuff.
Note: Immunologist do a different set of Lab work (Blood tests).
This has been my journey, Best Wishes on your journey
🍀