People often wonder what an episode is like for me. Here is an in-depth, detailed look at the bare bones events occurring when I’m actually overcome by these episodes. Fair warning: I describe it graphically and accurately. No tiptoeing around the tulips. It’s probably best not to be eating anything while you read this…
The way that I would describe a typical episode would be to say that it is the absolute worst existence within which a human being could find themselves trapped. I am fine one moment, and functioning normally, but then suddenly I become filled and consumed with the sensation of nausea, within a matter of seconds. The intensity and speed with which this builds is mind-numbing. Within minutes, I go from a perfectly healthy and happy person, who is able to function normally and independently, to a completely incapacitated person who can not think, speak, or move without the nausea suddenly exploding into forceful vomiting. If you are with me when I feel a prodrome come over me, you will see that I suddenly withdraw from everything and everyone. I stop talking and try to take deep breaths. The nausea builds rapidly and I become even less responsive. I try being as still as possible to keep the nausea from exploding. Even when I am able to stay perfectly still, the nausea is still all-consuming. I begin to tremble and have massive anxiety due to the sudden realization of the misery that is in store for me for hours and potentially days. Most of the time, remaining still is all but impossible, even though I want to be still more than anything in the world. I begin to hyperventilate, and panic builds with each increasing second and minute. I take my abortive meds. About 90% of the time, they are vomited back up nearly immediately, and don’t help me at all. Soon, usually within 5-15 minutes, the vomiting begins and I become one with the toilet. Most of the time, projectile diarrhea is happening at the same time, so, this requires logistics. This also renders me unable to using rectal medications due to them being expelled nearly immediately.I stay over the toilet until I am empty. By then I’m usually exhausted and move to the bed with my trusty puke bucket..
Now, is when I try to be still and get to sleep. A nearly impossible feat. Even if I remain completely immobile I will still vomit every 30 seconds to 5 minutes, on average. I writhe around uncontrollably on the bed due to the intense discomfort the nausea brings. I desperately want to jump out of my body until I can’t sense the chaos occurring with it any more.
As soon as the nausea begins, I begin to have autonomic temperature dysregulation occurring in my body. I sweat profusely, and within seconds my entire body becomes drenched with sweat. I attempt to dry off and/or cover up because I quickly develop body chills after becoming wet and exposing skin. I then become immediately and intolerably hot again, so I uncover. Then I am freezing again, so I re-cover. It is a constant battle where I become hot to the point of feeling claustrophobic and panicked, and I compulsively remove clothing or covers to help. Then I am immediately freezing for exposing the wet skin and need to cover up again. I am in constant movement due to this, despite desperately wanting to remain still. I’ve learned that wearing a terry cloth bathrobe or clothing can help facilitate my comfort with minimal movement on my part. It wicks the sweat from the skin, keeping my dry and warm, and it prevents soaked clothing and/or bedding.
The intensity of the nausea is incredible. It’s hard to imagine that it can be any worse than it is in the beginning of the episode when the nausea is building, and I am trying to breathe deeply and will it away. But, it gets so much worse than is imaginable. If I make even the slightest of movements, the intensity of the nausea rises suddenly and seems to become maximally unbearable. Like I’m about to implode. Then I explode with vomit. Even when it seemed maximally unbearable just prior, I am fooled, and learn it can get much worse if I move around. Not only does the nausea spike each time I make the slightest movement, but it also happens when I attempt to construct my thoughts, or attempt to speak. If I do these things I will suffer a burst of nausea and forceful vomiting, that might have not occurred if I could have managed not to move or speak. This is why I try my hardest to be as still as possible and succumb to the “conscious coma“. Sometimes my care-givers want to ask me how I’m feeling, or if I’m ok. Unfortunately, I feel much worse once I have spoken an answer to them. It’s fine to talk to me, just don’t ask me to respond. As a result, I tend to spit single words out with my exhale, very sharply, in order to communicate my needs. Because of this, I have sometimes been misunderstood as being demanding and ungrateful of the help others try to give. This is not the case at all, and I get very frustrated if I think someone feels that way about my behavior. I know how it looks, but I can’t do anything to change it. It’s how I protect myself from further misery when I have an episode. It is the same if someone tries to touch me to comfort me. The stimulus of touch on my skin also sends me spiraling into nausea. I know that others want to comfort me, so it is difficult for them not to. I find myself spitting out, “Please, don’t.”, when it happens. It does sound harsh to someone who only wants to help, but like I said before, I don’t know how to change it. It is what it is.
The 30 seconds after vomiting (if I empty my stomach) is the time when I get the most relief from the constant and never-ending nausea. If I can manage to become comfortable during that short amount of time, then is my best chance to go longer than 5 or 10 minutes without vomiting. However, that rarely occurs. Most of the time I have a few seconds of relief, I take a few breaths and try to relax, and then it all starts to build and start over again within the next minute or so, until I’m vomiting again. Also, there is no sleeping while in episode. None. For the entire duration of the episode. I learned that if I ever could just manage to fall asleep, and stay asleep for at least 3 hours, usually when I wake up the episode has stopped. It’s not 100%, but that’s been the historical pattern. The problem is that it is next to impossible to fall asleep when your nervous system is stuck in a spin cycle of madness. If I do get any sleep at all during these episodes, it tends to be a 10-15 minute doze after the first 8 hours, or so, of vomiting. Even when my body is exhausted, my brain will not shut down. Whatever is happening in the nervous system to cause the vomiting over-rides that normal response. I desperately want to sleep since I know it will end, and I won’t feel the nausea anymore.
During these episodes the dehydration is extreme. I vomit until my stomach is empty, and then keep right on vomiting until I am dry heaving forcefully and repeatedly. It becomes painful after a couple of hours. I also usually notice blood tinge in the vomit at this point in the episode. It comes from the stomach or esophagus and indicates that I have done damage. It is possible to tear my esophagus and/or stomach when I’m heaving, so it’s important to stop the heaving somehow. I am terrified of tearing my stomach. There will be no way for me to stop the bleeding. If it happens, I will vomit large amounts of blood, and will know I need to go to the ER immediately for surgery to repair the damaged tissues and stop the bleeding. This can be life-threatening if the bleeding isn’t stopped quickly. So far, I’ve only bled a little bit in episodes, never enough to indicate an esophageal tear. It’s always in the back of my mind, making me afraid.
Thankfully, I learned something that helps to prevent the dry heaving. Despite the intense nausea (and knowing that it will come right back up immediately), I become desperately thirsty. Think: “cotton-mouth” where everything is stuck together. I am desperate to drink when I feel this way. I learned to do something known in the CVS world as “guzzle and vomit”. I learned to do on my own this long before I read about or knew about it, or knew that other CVSers do it too. It is like a powerful instinct telling me to drink. The thirst is so intense that I will take several large gulps of liquid (Gatorade) to quench the desire. It gives immediate relief and it feels SO GOOD going down. (I’ve tried all sorts of things to see what feels/tastes the best going down AND coming back up.) It revives the parchedness in my mouth and throat, as well as in my stomach. But I know that it won’t stay down long. After I drink, I feel the nausea decrease for a few seconds only, then it increases again until I vomit. It doesn’t stay down long, but I do feel that I absorb a tiny amount of liquid into my gut each time I drink, before it gets vomited, and this keeps me from getting as dehydrated and potassium depleted as I have in the past before I learned to “guzzle and vomit”.
Also, it seems a little odd, but I get a great relief from hanging halfway off the bed, from the waist, upside down towards the floor. I can then hang over my bucket. I can brace against the floor with my hands/arms to prevent falling off the bed, and this is generally a position that gives me a very slight relief from the intensity of the nausea. I think it’s because gravity is helping facilitate the vomit coming out of me. And maybe because the blood going to my head makes me feel better, due to the fact that my blood pressure is low when I am in an episode. Despite “looking” uncomfortable, it is not. It’s very comfortable, except that I get tired quickly and have to lie flat after a minute or so. Any relief at all is greatly appreciated, so even a few moments is golden to me. I desperately seek ways to find any relief at all, and this is one of them. However, ER staff hates when I do it. They lock my bed rails up and tell me that I’m not allowed to do it anymore. I usually try to do it anyway, hanging through the rails, because there is nothing on the planet that could prevent me from seeking the relief from the torture of the nausea.
Also, getting all the liquid out of my stomach seems to be a key factor in getting the most relief from nausea after I vomit. (Another reason hanging upside-down is helpful.) If there is still liquid left after I vomit, I don’t percieve the drop in nausea the way I do when I am actually able to vomit up a substantial quantity of liquid and empty the stomach. When I dry heave, I retch increasingly violently while my body tries to expel something that isn’t there to expel. I feel that “guzzle and vomit” helps me by relieving the nausea a little when I actually have something inside of me to vomit out, and preventing me from dehydrating as severely, as well as preventing the electrolyte imbalance from being so severe due to the potassium in the Gatorade. “Guzzle and vomit” is a behavior that is very common among CVSers, but the general attitude of the medical staff to this behavior is less than desirable from the standpoint of the CVSer. I’d like to point out that in “traditional nausea and vomiting”, (like a virus/flu) it is correct to prevent the patient from eating or drinking. However, this is incorrect for a cyclic vomiter. The “guzzle and vomit” phenomenon has been studied and deemed much more helpful than hurtful among CVSers. Despite how it “looks” to others, we should be allowed access to as much fluids to guzzle and vomit as our little nauseous hearts desire.
Deep sedation is the only thing that stops an episode. If I am administered intravenous Thorazine and Benadryl in the proper dosage I can be deeply sedated. None of the other medications I have ever been given will work in any way, except for this combo. I have been given all the traditional medications for nausea and vomiting, via all routes of administration. Phenergan, Compazine, Zofran, Ativan, etc… None of it even touches my nausea/vomiting or makes the slightest difference in my condition. I simply continue vomiting in front of their astounded faces while the nurses shoot my veins up with all the traditional medications. Also, none of it sedates me in any way, unless it is given with a combo of IV Benadryl and Thorazine in the proper (massive) dose. Super duper hard-core drugs that are very bad for me. Nothing else touches it.
After learning which medications stop the episode, and that it can be stopped by sleeping for 3 hours, I’ve changed my attitude about going to the ER. I decided that one hour of violent vomiting will be my limit. If I can’t stop the episode at home after one hour, I will go to the ER to attempt to be sedated. I decided there is no point in waiting it out several days. If it doesn’t stop within an hour, I know it will continue indefinitely, so I may as well try to stop it. Sometimes I am lucky, and the ER staff treat me with no trouble. Other times, I am labeled a drug seeker, and am refused medications. Fortunately, I have found a doctor and hospital that will treat me appropriately. As long as I can get there and ask for that doctor, I know I will get prompt and proper treatment.
That knowledge gives makes all the difference in the world between fearing and dreading the next episode, and knowing that I have some control over my situation, and have some power to stop what is happening to me. It also gives me the strength to continue trying to beat this monster of a disorder. I’m not sure how much I’d still want to try, if I hadn’t found my “miracle cocktail”.
In summary, the CVS episode is torture, and is an absolute Hell on Earth. Those who know me personally know that I am a happy person, and that I love life. Suicide is something that I could never contemplate when I am in my normal frame of mind. I do not say this lightly. I contemplate suicide every single time I am in an episode. It’s the only time in my life when I feel that life isn’t worth living. I have never had to endure such misery for such a continual length of time in my existence, and know that nothing will ever rival it in my life again. There are no words that will do it justice. If you haven’t experienced it, you will never be able to understand. And I hope you never do. Before I had these episodes, there are no words you could have used that would have described the torture that is a CVS episode. It’s on another level of existence, where words are meaningless, and I am overtaken by something alien and merciless.