Near death experiences with CFS - anyone else?

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I feel I should start this post with a warning - the topic I'm talking about might be very distressing for some to think about so please, if you suffer from anxiety or depression, take care of yourself and feel free to not read!

I had a very bad CFS crash today, my worst in quite a while. I've been doing reasonably well lately, but this morning I had a bout of IBS which still happens to me pretty regularly. I thought it was because I'm on my period, as I often get loose-ish stool if not outright diarrhea during my period. I felt mostly ok once it stopped, but still a bit queasy and I was planning to go out and worried it might recur, so I took a single Immodium tablet as a preventative measure (half the recommended dose). I frequently use Immodium to control my IBS and have always found it very effective with no side effects.

Within maybe half an hour of taking the tablet, I became extremely sleepy, that kind of fatigue that makes your entire body feel like a lead weight and makes the effort of keeping your eyes open sickening. It's the feeling I get whenever I'm having a crash and the only thing to do is just sleep. I don't think it was necessarily caused by the Immodium as I often crash after a bout of IBS, but this time was particularly bad.

At first I slept for maybe 2 hours, then got up briefly and forced myself to eat some crackers and had some tea hoping it would give me energy, but it didn't. I went back to sleep for another 4 hours. It's a funny kind of sleep, not like the sleep I get at night - I'm half-awake, in that my eyes are often open, I can see and hear what's going on around me, but at the same time I'm having vivid dreams and I can't comprehend any of the actual physical input from my senses. In this state if I try to look at an object and interpret it meaningfully I feel nauseous and like I'm going to pass out.

Towards the end of this 4-hour 'sleep', I started to feel as though my entire body, vital organs and all, were shutting down. My breathing became extremely slow and shallow and my heartbeat slowed down to a crawl. At some point, I felt like if I didn't consciously take my next breath, it would never happen, and likewise I felt like my heart was about to stop. It felt like my body was so tired it had just given up, or maybe forgotten, how to make my heart beat. I was scared and took a huge breath and kicked my arms and legs to wake up my body and I called my partner over to sit with me.

Now, I know that it's possible for low blood pressure to cause death, and I suspect I had low blood pressure, but I don't think I would have actually died. I also know that anxiety can make you think you're going to die, but this wasn't that; I didn't have the energy to be anxious, and anxiety actually raises blood pressure and increases heart rate and breathing due to adrenaline - a point which I think is proven by what happened after I had this 'near-death' feeling.

I have a blood pressure monitor and as my partner sat with me I told him to bring me the machine so I could take my blood pressure because I wanted to know what was going on in my body. Taking my blood pressure makes me very anxious (although I'm getting used to it) and as I started thinking about it I slowly started to feel more awake and alive, which I attribute to the physiological effects of anxiety. I started to feel strong enough that I could sit up and drink water. I did take my blood pressure and it was 121/69, which I think was probably not accurate given that my heart rate during the test was 81 compared to 66 after I'd relaxed again following the test, indicating my anxiety levels and accompanying temporarily elevated blood pressure.

I'm curious if anyone else with CFS ever felt like everything in their body was just going to stop. Have you ever felt like you might not wake up if you don't make a conscious physical effort to stay alive? Part of me hopes I'm the only one because I wouldn't wish this experience on anyone, it's terrifying...but at the same time, if I am the only one, what does that say about my prognosis? I haven't heard of any deaths directly caused by CFS but it's hard not to wonder about when you've been through something like this.

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  • Posted

    my former wife had difficult years being diagnosed with Dysautonomia. mop the floor and your heart rate drops til you pass out. etc. this disease along with other diseases such as cfs is progressive and shortens your life by years. make the most of trying to stay healthy. more info if you ask of me. Terry

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  • Posted

    my former wife had difficult years being diagnosed with Dysautonomia. mop the floor and your heart rate drops til you pass out. etc. this disease along with other diseases such as cfs is progressive and shortens your life by years. make the most of trying to stay healthy. more info if you ask of me. Terry

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  • Posted

    Grailmoth, I have twice had an experience like what you describe an the end, though not after any medication. Once at home, where I got so faint and tired I could barely move, or speak. Actually, 3 times. Twice at home. The first time we called an ambulance. By the time they came it had mostly passed, and I had a raging pulse and blood pressure instead, a reaction, I think. Second time I went to the GP who sent me to hospital after much hesitation, they found nothing wrong. (Looking for stroke.) Third time was in the car on the way somewhere, that was the worst, I could not breathe, nor move, nor speak. My husband turned the car and drove straight to the emergency room, by that time it had lifted a little and I could talk but not walk, they found nothing wrong with me.

    All 3 times I felt I was dying, as you say the exact opposite of an anxiety attack, nothing like it at all. All the times it came out of the blue, and all the times it lasted long enough for me to think I was dying, and to make my peace with it. I felt I was simply shutting down.

    I have never got an answer to this, and cannot even guess what on Earth is going on.

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  • Posted

    I had three similar experiences. It felt like I imagined the mitochondria of every cell expiring and death was soon to come. When I recovered enough to search on-line, it was this site that helped me. I found another person who also felt as if he were dying. Like you, I wouldn't wish this on anyone but there was comfort in knowing of another case and that the episodes did not end in death.

    For what it is worth, I am feeling much better now two years later. In my case, symptoms followed a tetanus vaccine shot and about the same time, an adverse reaction to macrobid antibiotic for a UTI infection. In any event, acupuncture helped me the most of many approaches I tried in order to somewhat recover. And oral Liposomal Glutathione to support energy function of the cells. I have also changed to a ketogenic diet and that has helped big time, too. Mostly I was thinking, heal the gut--heal the brain (and nervous system) and the added bonus is a clearing of brain fog and more energy. Of course, we are all different but I wanted to pass this on in the event it will help you too.

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  • Posted

    Hi there,

    I'm not sure if Its the same experience you had but I used to have something similar happen a few years ago. It was at a time when I overexerted past my limits when I was still working. I would get to “crash” stage but symptoms were a lot worse & very scary. It was like being paralysed all over - I could not move at all. If there had been an emergency I would not have made it out. I could still hear but had nothing in me to be able to speak. My eyes were tightly shut. Everything seemed to shut down. I never had a heart monitor or bp machine to record results after but felt my heart was very slow. I’m trying to remember what else I felt but not nice to go back there & relive them nasty feelings. Like you say very different to a panic attack.,I’ve had 2 panic attacks (out of the blue & for no apparent reason) & was very scary, During the temporary paralysis phases I also thought I would pass, but in a much more gentle slip away kind of way. Thankfully (touch wood) I’ve not had those for a long while. The only advice I would give is to be calm & allow whatever is happening to happen - with acceptance. Like I’ve said before... it’s not what happens but the way we respond to it than can be the problem.

    Hope you are having a better day.

    Pet

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