I’m sharing my experiences with Carbon Monoxide Poisoning and the resulting TBI for anyone else who has survived these horrible experiences. I have read quite a bit about both, including from the survivors’ perspectives, and from what I see, most feel so alone in their suffering. I completely understand this, as I feel the same way. I am hoping writing about it will help anyone who has experienced either or both to know they aren’t alone, and provide some helpful information.
February 27, 2015 started out like about any other Friday for me. I was very tired, having barely gotten any sleep the night before, which happens quite often since I have C-PTSD. Otherwise the day seemed unremarkable at first. It was a cold winter day, so my husband started a fire in the fireplace that morning before he left for work. I maintained it after he left.
As the day went on, I felt rather loopy, but I chalked it up to having so little sleep the previous night. My cousin called me that afternoon, and later he said I sounded somewhat distant. He just assumed it was due to my lack of sleep which I mentioned during our conversation.
I felt worse and worse as the day progressed, but thought nothing of it. My head hurt, I had absolutely no ability to concentrate and my vision was blurry, yet the thought that something could be wrong never crossed my mind. I also do not remember much of the day, but my husband discovered that apparently I did some very odd things during the day, such as throwing away his bottle of cologne.
Between five thirty and six that evening, I took my daily shower. Sort of, anyway. I obviously did not do a good job, because hours later I realized I did not wash the conditioner out of my hair. When I got out of the shower, I got something to drink and looked at the clock – it was just past six. I then walked into the living room and realized the fireplace was starting to smoke up the house just a little. If you have a fireplace, you know what I mean – there is a little smoke in the room, so you adjust the wood on the grate, and open a window for a few moments and the smoke goes away. At least that is what normally happens. That did not happen in my case.
This time, as I went to adjust the wood in the fireplace, I must have passed out. I do not remember that at all though. I only remember going to the fireplace, kneeling in front of it to adjust the wood with the poker, then suddenly the house was full of smoke and I was standing by the fireplace.
My husband and I later pieced together what happened from my fragmented memories, what little he knew, and the evidence.
Apparently, when I went to adjust the fireplace at a little past six, I passed out, hitting my head on the firewood holder on the way down. There was a pool of blood beside it, it was out of its usual location by several inches, and I had about a three inch long gash in my scalp. I did not even notice the gash until I was told about it later that evening, in spite of the fact my shirt was soaked in blood.
When I came to, I was absolutely parched. I went to the kitchen for something to drink and to escape the smoke since I was having trouble breathing. I left a trail of blood that I did not notice. I looked at the clock. It was almost six-thirty, but it did not occur to me that I lost over 20 minutes. I finished my drink. I then called my husband at work, and he did not recognize my voice. He said I sounded very odd and was not making much sense. I was griping about all the smoke in the house, saying how frustrated I was because the house was all smoky and I couldn’t fix it. I sat down on the love seat as we talked, and said something about I wonder why there is so much blood all over the floor. He put me on hold and called 911 at this point, even though I had told him not to, that I did not want to deal with expensive hospital bills. I did not realize he did call 911 until two paramedics came into my home. Apparently there was also a fire truck, and a couple of firemen took care of the fireplace. To this day, I do not remember them at all, only the paramedics. I do remember some of the ambulance ride and later remembered what happened at the hospital fairly well.
A couple of days later, my husband looked at the fireplace, and the flue was somewhat closed. There was a bunch of debris behind it, forcing it to close a bit. It was not closed enough to show there was a problem at first, like a lot of smoke in the house. It apparently was closed just enough to force carbon monoxide into the house, however. Thank God my husband was at work that day and my furbabies were not affected because it hovers at around five feet in the air. That they all were unaffected is a miracle!
This entire experience has been very harrowing for me in so many ways.
For one, I was less than thrilled with how the hospital staff treated me. They did not seem very concerned that I had Carbon Monoxide Poisoning. They examined and treated my head wound first, which makes sense, but even so, it took I think it was about two hours to test my blood gases and get me on the oxygen I desperately needed. By then they told me that my blood gases were at 16%, and a nurse said, “Eh, that’s not so bad.” Without oxygen therapy, carbon monoxide leaves your system in 2-4 hours. With oxygen, in 1-2 hours. It seems safe to assume at its peak, my blood gases were quite a bit higher, which is extremely dangerous. Remember, the nurse said said that 16% was “not so bad”. It sure seemed very bad to me!
While at the hospital, they told me I was very drunk. At first, I thought they were lying to me, or wondered if someone mixed up my blood test results with someone else’s. I had no memory of drinking anything alcoholic, and I felt very weird, not drunk. It made no sense! The staff was extremely shaming to me about this too, which added insult to injury in the situation. The nurse who said my blood gas level “wasn’t so bad” looked me in the eye and said, “You’re nothing but a blackout drunk, aren’t you?!” The doctor accused me of drinking all day, and said I needed help. It was very upsetting because I had no idea how to explain my condition, and the staff was so nasty with me about it, I am sure they would not have believed anything I said to explain it anyway. I was so embarrassed about this that I did not admit this part of my experience to anyone but a couple of my closest friends until about a year later when I finally remembered what happened.
Later, I realized that I was drinking all day, but it was a bottle of sparkling water, not alcohol. I finished it at some point, and threw it away because I found the empty bottle in the trash after coming home from the hospital the following morning. Apparently when I first came to and was extremely thirsty, it was because head injuries can cause excessive thirst. I was so disoriented, that apparently when I saw a bottle in the kitchen, I just drank from it. That bottle contained whiskey, not sparkling water since that bottle must have been in the trash then, and I had no idea of what I was doing at the time. Unfortunately as a result of this embarrassing situation, my medical record shows more notes about my intoxicated state than Carbon Monoxide Poisoning or head injury.
Also, I had to practically beg the doctor who put the staples in the wound in my scalp for more medicine in my scalp to numb it. He could not seem to understand why I wanted more medicine and was upset. Eleven staples. In my scalp. Lots of nerves in the scalp, and I do not like pain. All good reasons to numb my scalp to me! He also could not grasp why it was upsetting to me. Again, eleven staples in my scalp. I do not do this every day, never had staples before, so yea, I was pretty upset.
A nurse and a doctor both scolded me about getting my heart rate down too, as if I could control that. No one seemed overly concerned that Carbon Monoxide Poisoning can elevate your heart rate to the point of heart attack.
The staff also said I did not have a concussion or any brain damage. Considering I was very dizzy and my vision was blurry, you would think they would have done further testing or warned me that I could have a concussion that did not show up immediately on the CAT scan, or symptoms might show up later.
The worst part of the whole hospital experience though is no one told me what to expect after leaving the hospital. They sent me home with a short list of a few symptoms (I forget exactly how many) and said if these happen, see a doctor. No one said the symptoms could be serious or more could develop in the days, weeks or even months after I went home. In fact, they even sent me home with a note saying I could return to work in two days. Thank God I do not have a job outside of the home, as there is no way I would have been able to go to work two days after it happened! I could not do much of anything for months after the poisoning.
I eventually developed many more symptoms than the ones on the list, most of which developed in the weeks after my trip to the hospital. I did some research online while I was recovering, since I really did not feel up to searching for a doctor or even leaving home to see a doctor. I then learned that not only did I survive a pretty serious case of Carbon Monoxide Poisoning but likely a concussion as well. I also learned that Carbon Monoxide Poisoning also causes brain damage. Thankfully I have learned a lot from what I read online and in talking to some people.
This awful experience has been very isolating as well. If you read my work, you know I grew up with narcissistic parents as did my husband. Even in the poisoned haze of Carbon Monoxide Poisoning, while wearing the oxygen mask, I remember telling my husband if he told any of our families about what happened to me, I would kill him. Not in the hospital, because they would fix him, but later, away from the hospital. While I was not entirely serious about actually murdering him, he knew there would have been hell to pay if he told any of our parents because narcissists are the last people I wanted to deal with at that moment. My in-laws would not have been much of a problem, because I stopped speaking to them years before. They would have no doubt showed my husband fake concern, which he would have told me about, and which would have annoyed me. My parents though? I know just how they would have responded. My mother would have told me she could not help me in any way because her back pain was too bad, and her latest struggles with that, ignoring anything further I had to say about my illness. If she knew someone who experienced Carbon Monoxide Poisoning, she would have told me how they were back to normal in a couple of days, so I should be too. When I was not, she would have accused me of faking it. My father would have wanted my reassurance that I was alright, then gone on to say, “Can you imagine what would’ve happened if you’d died?!” A terrible scenario would have followed which would have thoroughly depressed me.
I also did not tell most of my family. Most of my relatives thought my only purpose in life was to take care of my father. They have been very critical and invalidating about other things such as my relationship with my parents and my work. Keeping all that in mind, I figured it best not to tell them about this experience. I knew I just could not emotionally handle coming that close to death being ignored or trivialized. I only told a couple of my cousins with whom I am very close and I know are trustworthy.
Then there are the symptoms. Wow! I had no idea how hard they would be to go through or how varied they would be! The poisoning made some symptoms of C-PTSD I already had worse, like mood swings and short term memory problems. Knowing these things are most likely permanent is utterly depressing. I try to keep a positive attitude the best I can, like reminding myself at least with my bad memory, I rarely get tired of reruns on TV.
Carbon Monoxide Poisoning can cause many ongoing physical, emotional and cognitive problems. Here are my symptoms and my experiences with them to clarify them. If you have experienced Carbon Monoxide Poisoning, you may experience less or more of them than me, experience them differently, or even experience none at all. Everyone’s experience is different. In fact, from what I read, about half of people who survive it have no symptoms whatsoever, half experience lifelong, debilitating symptoms. It is a very strange thing!
- Headaches. Much better now, but they still happen often. Once in a while ibuprofen helps, most times nothing helps. Stress, being overworked or tired trigger them, and other times nothing triggers them.
- Fatigue. It does not take much to tire me out. Even a quick drive to the local ATM can do it.
- Malaise. It feels like I am coming down with a bad case of the flu, but much more painful. It was horrible at first, and did not let up for weeks. Now it happens much less often.
- Eyesight is damaged. I need much stronger glasses than I did before this happened. My vision got much worse for the first year after, but then it plateaued off. Sometimes when I get stressed or upset, my vision still goes blurry for a little while. My eyes are also very dry now, too, when before, this never was a problem.
- When I write, now sometimes I invert letters. The becomes teh, love can be lvoe, with is often wtih. Thank God for spell check…it’s my new best friend.
- Irritability. I get irritated very quickly now. Try as I might, there are times I snap at people and have to apologize quickly.
- Anger. I had heard of the TBI rage prior to being poisoned, but now I have first hand experience with it. I am still quite patient, but some things infuriate me very quickly now. If someone deliberately mistreats me, I no longer have patience for it or give them the benefit of the doubt. I will not hesitate to call them out on their bad behavior, and chances are, I will not be polite.
- Mood swings. As if the C-PTSD did not make them happen often enough, now my life is an emotional roller coaster.
- Super sensitive. About anything can make me cry. Shortly after I got sick, I was playing a game on my tablet. I got stuck on one level. I was frustrated and asked God to help me in a complaining half prayer type of moment. I played again, and passed the level with a very high score. I immediately started crying and thanking God for loving me so much as to care about how I felt about this stupid little game. Pretty strange, huh?
- I have more empathy for people than I did, unless their pain was caused by them making a dumb decision they made in spite of knowing better. Then I have no patience for them. In fact, I have much less patience for all kinds of things now.
- Short term memory. It is pretty much gone. I have learned to love the Google Keep app, Google calendar and post it notes. They help me remember things because I really cannot remember recent things well at all for the most part. Sometimes I do remember recent things well, but that is pretty rare. My long term memory was not affected nearly so badly. I often remember lyrics from songs I heard as a child, but cannot tell you what I did yesterday.
- Concentration. Do not expect me to be able to do something for long. It will not happen. I simply do not have the intense focus I once had. And, if I am interrupted, my train of thought is completely derailed.
- Comprehension. Sometimes I have trouble figuring out even simple things. My husband has gotten used to me constantly saying, “What do you mean?” since I got sick.
- Vertigo. Thankfully, it is not nearly as bad as many people have it, but it can still be pretty rough sometimes. Dizziness strikes me out of the blue, but especially when I stand up, look up or down quickly or for too long, or look at stairs when I am about to go up or down them. It is happening less than it did at first, but still happens quite often.
- Depth perception. It is really inaccurate. I have a terrible time parking my car without looking like a blind person parked it where this never was a problem before. I park far away from other cars so I am sure not to hit other cars or take up two parking spots.
- Balance. I have been fortunate. My balance at its worst was not terrible, and it has improved. Even so there are times I feel unsteady on my feet, and like I am leaning to the left (which is where I hit my head when I passed out).
- Multi Sensory Sensitivity, aka MUSES. This disorder only happens to those who have survived Carbon Monoxide Poisoning. It means your senses become extremely sensitive. Edgar Allan Poe (who survived Carbon Monoxide Poisoning) described it as “a morbid acuteness of the senses.” Here is what I mean…
- Light and noise sensitivity. I always have preferred dark and quiet, but now I absolutely need them or else I get a bad headache.
- Chemical smells bother me. Tile cleaner, bleach and other household cleaners give me a headache and make me feel woozy now when they never did before. Even if my husband uses a cleaner in another room, it still makes me woozy most times.
- My sense of touch seems more sensitive. I do not wear shoes in my house. If the floors are not perfectly clean, it irritates my bare feet.
- My sense of taste is different. Suddenly I disliked or liked different foods than prior to my illness.
- Occasionally my heart races some. The night of the poisoning, it went up to 168 beats per minute when normally it is around 90-100. Thankfully now it does not go above 120 when this happens, and it does not last long, but it is still unsettling.
- My appetite has changed. Most days, I can go without eating much at all, but sometimes I get really hungry.
- The “I’m hungry” and “I’m full” signals almost never work anymore. I rarely feel really full or really hungry now, so I do not usually look to my body to tell me when it is time to eat or stop eating. I just go by what I did prior to getting poisoned.
- Carbon monoxide sensitivity overload. God help me if I am near a running vehicle. I do not even have to smell the exhaust fumes for it to make me feel ill for anywhere from an hour to a week. When that happens, I feel almost exactly as I did in the hospital.
- Low tolerance for stress. Once you have had Carbon Monoxide Poisoning, your body is different due to the damage caused by the carbon monoxide attaching to hemoglobin during the poisoning. It gives you an extreme sensitivity to carbon monoxide even once the initial poisoning is over. That is why the sensitivity to exhaust fumes, for example. When you are stressed, your body produces a tiny amount of carbon monoxide naturally. A healthy person has no problems with this process, but one who has been poisoned previously, being very sensitive to carbon monoxide, physically cannot handle the additional carbon monoxide in their body. It makes you feel sick when you get stressed, even in cases of mild stress.
- In spite of being an introvert to the extreme, now I get lonely easily. I have gotten clingy with my husband. I do not like being left alone for long periods of time as much as I used to. In fact, for the first time in my life, sometimes now I absolutely hate being alone. I really believe I have developed Dependent Personality Disorder.
- Seizures. Flashing lights can trigger a petit mal seizure in me now, which is known as Photosensitive Epilepsy. Brain injuries can cause this or other seizure disorders. My father survived a near fatal traumatic brain injury when he was 15 in 1953. In 1996, he suddenly started to get petit mal seizures. Thankfully, I only have to avoid flashing lights to control my seizures. My father had to take a very expensive medication since his seizures happened at random, including one time when he was driving.
- Hand tremors. My hands have become quite shaky, and get much worse under any stress at all, even small amounts.
Some good came out of my awful experiences, though. I truly appreciate little things so much more now. Warm running water in the shower and my very comfortable bed, for example. Kisses and cuddles from my wonderful furbabies are another thing I love more than ever. Little things like that can bring me joy like never before. I also no longer have any tolerance for being mistreated by anyone. Where I once stayed quiet or defended myself rather meekly, I now am much more willing to call people out on their bad behavior or make them explain themselves. I also have a better grip on anxiety now. Not perfect, but better at least. Coming so close to death has helped me not to sweat the small stuff so much. Definitely another big plus. I am extremely grateful for such changes, although I wish they would have come about in an easier way!
The changes in me, good and bad, make me feel very isolated. I do not know one other person who has experienced long term symptoms from Carbon Monoxide Poisoning. The one person I know who was poisoned has no ongoing symptoms.
I have found most people do not want to hear me talk about my experiences or symptoms. Coming so close to dying really shook me up, but admitting that to some people has elicited such responses as, “But you didn’t die!”, changing the subject quickly or making jokes about my symptoms. This has left me feeling very alone.
One thing that helped me was finding out that one of my favorite authors, Edgar Allan Poe, not only experienced Carbon Monoxide Poisoning, but wrote about his symptoms. The compilation list I found of his symptoms compared so much to mine, I finally felt not so alone. It also helped me not to feel so crazy! The symptoms can be so bizarre that they can make you feel insane sometimes. It was reassuring to know about what was happening to me, and that he experienced much the same things as I did. I also found a website where many survivors discuss their symptoms that helped me very much as well. Unfortunately the site is no longer in existence.
While I was recovering, I felt as if God wanted me to share some of my experiences. He constantly encourages me to be transparent, which is very hard for me, as I am an extremely private person. I think it is because people are thirsty for people who are real. There is so much fake in the world, and people truly appreciate real since it is so rare. I have vowed to be very real in my writing, even admitting the bad or embarrassing things.
So, here it is. My real experiences with Carbon Monoxide Poisoning. I pray it helps you in some way. I think it is helping me some as well, to write out my experiences in detail like this. Writing things out can be very validating, which is why I always encourage people to write out difficult experiences.
If you too have experienced this horrible thing known as Carbon Monoxide Poisoning, you are not alone. Many other people go through it every year. According to the EPA website, around 500 deaths occur and 15,000 trips to the emergency room annually because of accidental Carbon Monoxide Poisoning. That is not something most people are aware of, and I think it is partly because when a poisoning case does make the news, the death is often blamed on a faulty furnace or other piece of equipment, rather than saying someone died from Carbon Monoxide Poisoning caused from a faulty furnace or piece of equipment.
In spite of the many deaths and hospital trips annually, not many people know a lot about Carbon Monoxide Poisoning. Sadly, that includes those in the medical community. I would like to urge you to talk about your experiences. Write about them in a blog or on a website. Other survivors can benefit from your story. Look how much I have benefited just from reading about Poe’s experiences. Your story may bless someone else as his story did me. And hopefully, by sharing your story, you will find comfort from others when you learn you truly are not as alone as you feel.
If you wish to talk to me about your experience, you can reach me at CynthiaBaileyRug@aol.com