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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Have you had an MRI ?? Doctors told me what I was feeling was all in my mind took ages to get them to do tests then found out I had gallstones. So now I tell doctors " don't ever tell me what I am feeling isnt real till u have done every test in the book and invented a few more.
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2 ReactionsI don't understand why they don't have you on oxygen. And Iron infusions. I have pulmonary fibrosis, but so far it's been stable however my oxygen level goes down to 82 or 83 when sleeping so my oxygen is only at night. Our medicare hemmed and hawwed about letting me have oxygen at night, but my doctor and also the doctor that read my tests said I should be on oxygen at night so I bought my own oxygen concentrator at night and to heck with dealing with medicare. My ferritin levels have gone quite low-13 I think- and I had been anemic for many years starting in 2015 so I took iron pills until it ruined my stomach so now I have to get iron infusions when my ferritin goes to low. And low ferritin can affect your oxygen levels. I''m hoping you get your situation resolved. Keep nagging those doctors.
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4 Reactions@janeilene
@tisme I think it is a combination of depression, anxiety, and anemia. Ironically, my anxiety somewhat helps my anemia in the short term because the adrenaline rush when I get really anxious allows my heart to beat faster and me to breathe deeper, (because my lungs' exhaustion is put on hold), so I get more oxygen and can breathe deeper. Fortunately, my upped dose of Mirtazapine got rid of most of the depression and now I can actually remember some things (even if I still forget a lot). It also helped with my anxiety, so at least I am a little less air hungry.
The irony behind all of this was that I have received an average of 31 (a good to elite score) on my ACTs, during a highly disrupted test and when I haven't even taken geometry, despite all of my medical issues.
Anemia explains most of your problems.
Have you been tested for sleep apnea?
Apnea can cause autonomic problems.
@janeilene As for the infusion, yes they are willing to cover it, but it will only be about 300-ish milligrams, which I will just burn through. My older brother, who has gotten his infusion, with higher iron levels than me, had about 1000-ish milligrams.
As for oxygen, I didn't know that was a possibility, and I certainly have low enough levels to be affecting my processing, but Mom is going to ring up the hematology clinic Monday, again, to see if they can get me in. I found out last night that we do have an oximeter (I have no idea why) so I will use that later today out of curiosity.
Recently had an At Home Sleep Test - Failed. Then spent the night at hospital Sleep Lab - polysomnography - learned a lot.
1- two types of sleep apneas -
- obstructive - "where the airway is physically blocked"
- central - "recurrent episodes paused breathing due to a failure of the brain to send proper signals to the muscles that control respiration" – BPAP Sleep machine (different pressure inhale and exhale) - This is what I have.
2- Polysomnography test - learned that I pause breathing throughout the night, the oxygen level drops to 77% for 21 minutes (total) - "dangerously low/ morbid" you have my attention - this was while on the sleep machine - how low has it been without sleep machine? - how long, seconds minutes, were the oxygen level drops? During the day, oxygen level 93 to 97%. Also, Wake up 3 to 5 times a night - all of this is why I have fatigue, low energy, headaches, migraine (stabbing, throbbing, visual disturbance - auras, nausea, brain on fire/ burning). Working through the low oxygen level. Read that low oxygen level, 5 minutes or more, is when organ damage starts.
https://www.sleepfoundation.org/physical-health/what-are-normal-oxygen-levels-during-sleep
https://www.mayoclinic.org/diseases-conditions/central-sleep-apnea/diagnosis-treatment/drc-20352114
https://mcpress.mayoclinic.org/sleep-apnea/understanding-your-apnea-hypopnea-index-ahi/
Best Wishes
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wow, so sorry to read all that you have, and i thought i had many conditions, don't know what to tell you just that I wish you find out what it is wrong with you.
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I have sleep apnea dont remember which type had it for such a long time,, I do notice a difference between when I use the machine and when I dont.
@tisme @khali and @fourleaf
I don't exactly know about the sleep apnea, but in two years I am leaving for Australia (where I also am a citizen) so I probably can get that checked. Anyway, my oxygen does seem to fluctuate between 92-98% during the day, so maybe it will be worse when I am asleep. Regardless, I can hold out at the very least until Australia if need be.