Index Support Center Forums Diagnosis Process Covid-19 The Long Haulers

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    My spider sense is tingling. The more I read about the long term effects of Covid-19, the more it sounds like an immune response gone nuts and having attacked their own cells.
    Read this article about the long haulers…
    It sounds remarkably like undiagnosed Narcolepsy…
    “The fatigue has been really persistent …

    All I want to do is go to sleep from like two o’clock on every day, and some days I have to,” says Hulett. “I’ve also started having a lot of like cognitive difficulties. Like I can’t remember things, I can’t focus on things

    That this can affect you neurologically is not in doubt. And it makes me wonder if anyone who is experiencing this sort of “immune response gone haywire” has had their CSF checked for Orexin/Hypocretin… it would be low to none if this is what’s going on. It’s just ringing a lot of alarm bells for me and will affect a lot of people for a very long time… as in, the rest of their life and will involve major life style changes.
    The short version of this post:
    Assume everyone is infected. Practice safe measures IF you have to go out and go out as infrequently as possible.
    The stats mean boodiddleysquat. Stay Safe!!!


    This is what happens if you get Covid-19 and DO end up in ICU…

    I have a DNR in place if I ever get to this point. PLEASE let me go! And PLEASE stay cautious for yourselves and for the people you love.

    This was posted on Reddit. I didn’t know how to link to it or how to properly cite it so I copied the whole thing. Wear your mask, wash your hands and keep away from those who don’t.

    •Posted byu/99sstillfine
    13 hours ago
    What to expect when you get critically ill from COVID-19. A healthcare worker’s perspective.
    First-hand account (hospital/work email)
    I am a healthcare worker who has volunteered to be a part of the COVID ICU “proning team” at the hospital where I work. I am writing this because my colleagues and I had a long discussion today about how disconnected the public is when it comes to the harsh reality of this virus and what it does to people. I will describe in as much detail as possible what you should expect to “experience” when you get critically ill from COVID-19.

    By the time I meet you in the hospital, you’re already intubated in the ICU. This means that you likely started feeling terrible enough to get yourself to a hospital and then got admitted into said hospital. Your condition worsened to the point that the medical team determined that your best chance of survival would be to place you in a medically-induced coma and hook you up to a ventilator that literally breathes for you. The process that leads up to this point is traumatic, terrifying, and lonely. You are allowed zero visitors and your only interactions are with strangers that come into your room unannounced, wearing what look to you like hazmat suits. The hospital you’re staying in isn’t equipped with enough “negative-pressure” rooms to contain the virus and keep it from spreading to the hallway so there will be a giant window unit that pumps all the air from your room out the window vs allowing it back into the hospital. This window unit is LOUD (similar to a generator) and it will drive you absolutely insane because it MUST be running 24/7. So, you’re just going to have to accept that. As terrible as all this external hell feels, it’s nothing compared to what’s going on internally. Your body is deteriorating. Every breath is a gasp. Turning over to face the door when you hear a knock is impossible because you are literally THAT exhausted. Your oxygen levels continue to drop, even though you are being pumped MASSIVE amounts of pure oxygen through your nose (which is now bleeding constantly because it is completely dried out). The oxygen levels drop so low that the only course of action is to make you comatose, give you a paralyzing agent so you don’t thrash, and place you on a ventilator. Ok, so NOW let’s get to the bad part.

    You’re laying on a bed, on your back. Unconscious, naked, Foley catheter in your urethra, and maybe (if your nurse is lucky) a FlexiSeal in your anus to collect all your diarrhea (look it up if you have questions). A ventilator is placed down your throat, somewhere between 20-28centimeters down. It will probably move around if it’s not tethered, which is a no-no, so it will be taped to your head/face. We’ll come back to this later, because that tape will eventually mess up your face, maybe permanently. A feeding tube goes down your nose because comatose people can’t eat, obviously. So your diet is now a nutrient-packed yellow mushy soup. Yum! Ok this is the basic setup.

    Even with all this medically-engineered hoopla, you continue to deteriorate. The ventilator is running 100% oxygen down your throat, into your lungs but still not enough is getting into your blood. This is where organ failure starts to happen. Kidney failure, brain damage, etc. And this is where me and my “proning team” show up at your door.

    Prone = laying on your stomach.

    Supine = laying on your back.

    Proning = turning you from your stomach onto your back.

    Why do we do this? Well, to simplify it, the back of your lungs are bigger and better at oxygenating your blood. But when you’re laying on your back, all the fluid (LOTS of fluid) in your lungs accumulates and fills the back of your lungs – thus drowning them and making them much less effective. Flipping you onto your stomach causes that fluid to move to the front of your lungs (because gravity), freeing up the back of your lungs to do their better job. Honestly, it’s pretty amazing to see how quickly you will go from 79% oxygen (SpO2) to 93% as soon as we turn you onto your stomach. It’s very satisfying for us. Makes us feel proud. We’ll pat you on the back, literally, and give you kudos for this oxygen accomplishment.

    We will plan to leave you in this prone position for somewhere between 12 to 18 hours. Your head is turned to the side, otherwise the ventilator tube would be rammed through the back of your mouth. Don’t worry, we will position this for you, you’re paralyzed, remember?

    Once those 12 – 18 hours are up, the prone team comes back in to flip you back over to supine. This is where things can get ugly. Being paralyzed and on your stomach leads to A LOT of swelling/edema. Especially in your face. Your tongue has swelled up to ~5x it’s normal size and it doesn’t fit in your mouth anymore. Lips swell x5 times, too. Your eyelids have been taped shut but they’re swollen too. It looks like you have golf balls under your eyelids. Now, remember that tape that holds the ventilator tube in place? Well, it’s still holding tight. And with all the face/mouth swelling, I should emphasize the word TIGHT. You’ll be in this condition for a while. Maybe a week, maybe two, maybe three. That tape will get replaced daily but it will do some damage to your skin, especially your lips and ears. And since your blood isn’t getting proper oxygen, your body isn’t great at healing wounds. So, expect your face to look a little different for a LONG time, if you make it out alive. I now can say that I have seen a living person’s cheekbones. Not the form of the cheekbones, but the ACTUAL bones, because their wounds on their cheeks got so bad that the flesh necrotized and sloughed off during the friction involved with a head turn.

    Where were we? Oh yes, we just flipped you back to supine. The 5 of us will be doing some routine care on you: wiping you down with Chlorhexidine Gluconate (CHG) wipes, putting Venelex cream and Mepilex patches your bed sores (think bony prominences – knees, clavicles, sternum, shoulders, nipples, shins, cheeks, etc.), using a suction device to suck up all the secretions from your mouth and nose, cleaning up your diarrhea from EVERYWHERE and changing that pesky face tape. Don’t worry, we’ll be gentle.

    Now, it’s been maybe 10-15 minutes on your back. We stand back and assess how you’re doing. If you’re a champ, your oxygen levels stay in the low/mid 90s and we can leave you like this for 1 to 8 hours before you start deteriorating again, at which point it’s back onto your stomach.

    The idea is that each time we put you back in supine, you’ll be able to maintain longer and longer periods of time before your oxygen drops to the 80s or 70s (or 60s, 50s, 40s, you get it).

    The longer you’re in this ICU situation, the worse it gets. Eventually, we have to start doing all the routine care from the side-lying position, because putting you on your back could literally kill you. The supine position becomes intolerable – your blood pressure starts to plummet, your heart skips beats or shoots up to the 200s (or just stops) and your oxygen level drops immediately. So, unfortunately, you go back onto your stomach. More swelling, yay! Repeat this process daily and hope for better results each time. The more often we have to repeat, the less likely you are to survive, because it’s an indicator of how poorly your lungs are recovering.

    Now, this is the point where someone might ask, “why are you keeping this person alive? Isn’t it inhumane to prolong this person’s suffering? What quality of life will they have when/if they survive?” Unfortunately, that’s not our choice. Even more unfortunately, it’s likely not even YOUR choice. Who’s choice is it? Your Medical Power of Attorney (MPOA), which 9 times out of 10, is a family member. Now, remember, there are zero visitors allowed for COVID-19 patients. That means that your family is getting ALL the information about your condition from a phone call or texts messages from someone on the healthcare team. Your family can’t see you and they can’t talk to you. Thus, they simply cannot appreciate just how much you are suffering. How could they? It’s not their fault. They love you. They’re praying for you. They’re wondering if they are making the right choice but they are doing so without all the information, because a phone call from a doctor or case manager can only go so far.

    Above all, they are holding on to hope. Hope that you’ll come back from this. That you’ll be that patient in that next news video that gets the standing ovation as they’re wheeled out of the hospital because YOU MADE IT. And I hope you do, too. We all do. We care about you. If you make it out of that ICU, you’ve got months of rehab ahead of you. Your fight for life has JUST started. The success story is that, against all odds, you didn’t die.

    Or, maybe you did. As I write this, 170,000 people have died from COVID-19 in the US alone. Each one of those people had a story, a life, a family, dreams, goals and a future. So many of them suffered tremendously through their last days, with strangers. Now they’re gone, forever. And that ICU bed is ready for the next one. I hope it’s not you. I hope it’s not your mom, dad, grandpa, aunt, sister, child or neighbor. But if it is, you can count on me and my coworkers to be gentle with you and treat you with dignity and respect. We will do everything in our power to get you home. This virus doesn’t care about your political affiliations, your plans, your freedoms. It doesn’t care about you at all. So we will.

    Now, if I may…..please wear your damn mask.

    Edit: The title says “when you get critically ill.” Emphasis on the “critically ill.” This is NOT what the average person should expect when they test positive. Most people DONT get critically ill. The VAST majority of people will never even see a regular hospital room, much less the ICU – I tested positive and I recovered at home with no medical intervention. Most will have mild symptoms and then recover. That being said, this post reflects a real possibility and a current reality for many people. I want people to understand the harsh reality of COVID-19. It affects everyone differently and taking small, practical precautions can keep you from ever having to wonder “is this going to happen to me?” or “did I get grandma sick because I didn’t take this seriously?” I apologize that this came off as fear mongering. The post reflects my experience as a healthcare worker and I feel that the public hasn’t had enough of that experience other than “we are overworked and tired.”

    p.s. from Ferret… the fact is you don’t KNOW if you will be one of the patients described above although any pre existing condition makes it more likely. Act as if you and everyone else are infected. Wear a mask, socially isolate and stay safe.


    Something to consider…


    Regarding the initial post, I think every viral infection can and often does do permanent damage to various organs in the body, either directly or through some sort of immune response issue. We’ve just never had the world’s medical scientists all pointing their microscopes in the same general direction for such a protracted period of time, and now we’re starting to notice more of these post-infection maladies. If there’s one positive thing that can come out of this mess, it will be learning more about the impacts of viral infections, and possibly even how to predict who is going to be at risk for long standing complications. I was always a little bit of a sleepy boy, but a lot of that was due to poor habits. I got the swine flu of 2009 and had a really horrible bout with it, and it mainly just feels like I’ve been under the weather ever since. We’ve been conditioned to think that thanks to modern medicine, you get sick, and then if you survive you get well and that’s that. Truth is way more complicated I’m sure.

    My current jam: Anathema - Springfield


    Pretty much my entire wife’s extended family on one side, including her 93yr grandma and several others in their 60s. It’s awful. Statistically, chances are more than one isn’t going to survive.

    @deathrabbit Interestingly there was a spike in N following the 2009 swine flu.


    Are you talking about the 2009 swine flu spike in N that followed the actual flu or the vaccine (Pandremix) in Europe?

    They are still trying to figure out if the neurological symptoms in Covid-19 are the result of the coronavirus or the body’s immune response to it…

    AvatarSleepy RBD

    As more is being learned about the virus and some of the potential long term effects, I’ve been wondering about some of the same things. For example, could there be a possible increase in the number of NT1 cases identified as a result of this virus due to the triggering of the body’s immune response? I guess time will tell…

    @deathrabbit The severity and frequency of my symptoms, especially cataplexy, have definitely increased through the years. Although this goes against some of the things I have read concerning the reports of symptoms of Narcolepsy decreasing with time, I can only speak for my own experience. Could it be possible with each encounter of another virus or serious immunological response to such, our bodies are impacted to an even greater degree than we may know? I think it is something to be considered, but I’m definitely not an epidemiologist, neurologist, or any other medical specialist…

    All of this leads me to another question which may be somewhat hypothetical and based on hindsight for you guys, as it is for me. Can any of you pinpoint the particular illness / timeframe which you think may have been the beginning of your symptoms?

    For example, one of my earliest childhood memories was when my whole family had been very sick with the flu. I remember friends leaving food at the door for us because my family and I were all so sick. We couldn’t go out and I guess we weren’t willing for our friends to risk coming inside. When I was diagnosed with NT1, began to learn more about it and my family’s history of sleep problems, I started to consider the possibility of this illness from my childhood being the trigger which activated the immune response resulting in the beginning of my journey with narcolepsy. This made sense to me because as far back as I can remember, I have “always” had sleep issues so much so that it was just my normal…

    @ferret Thank you for continuing the conversation…I think there remains a lot to be learned…

    Stay safe everyone…


    I remember this well. I had a hard time differentiating between what was real and what I had dreamed. Incredibly scary and frustrating.

    Really bad strep throat/ear infection when I was 13 was, I think, the beginning of the end for me. Increasing sleepiness. Cataplexy started in my early 30’s with dippy knees upon unexpected laughter and diagnosis of N1 with full blown (fall down) cataplexy happened when I was 35.

    WEAR A MASK AND SOCIALLY DISTANCE! This is a quote from one of our local forums:


    And more…

    Wish to hell that somebody would check the Hypocretin/Orexin levels on these people. For sure the symptoms will give you a ptsd type experience. Doesn’t anyone else here relate to the panic that not being able to think clearly causes?


    I am not posting this to alarm anyone but to find out which (if any) of the Covid vaccines have an adjuvant which has not been previously proven. The development of Narcolepsy Type 1 after receiving the Pandremix vaccine IN EUROPE for swine flu in 2009 is well documented. The European version used a different adjuvant than used in North America.
    I will be looking into this more in the coming weeks. Wouldn’t mind a little help if anyone finds out anything about it.


    Thank you for the information about the virus , I believe that people should be informed.


    Can anyone relate?

    GET VACCINATED! It really doesn’t matter which kind because they ALL prevent serious illness and hospitalization. In Mexico, the first rollout for those over 60 has been horrendous. Some people waited 12 hours to get vaccinated. I went on the last day and waited 3 hours in line and finally got into the tent. People came around with clipboards checking all your documentation and asking some health questions. Then we waited some more until a Doctor came in and told us that they had run out of vaccines. BUMMER! I remain unvaccinated.

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