8 Things I Do When In A CVS Episode

8 Things I Do When In a CVS Episode

CVS (cyclic vomiting syndrome) patients do all kinds of things to help make their nausea and sickness go away. My episodes last on average between 9-11 days at a time. But it’s not always clockwork. I had one spell at the beginning of August that lasted 13 days, and another spell toward the end of August that lasted 5 days. Here are eight things that I immediately turn to when I know that an episode has hit: 

1. Make the Room Dark

Similar to migraines, and often referred to as abdominal migraines, CVS brings with it a sensitivity to light. Shutting off the light, having dark curtains, and not looking at screens, which are bright, all help me considerably.

2. Take Hot Baths

It’s unbelievable how much relief can be brought by taking a hot bath. And when I say hot, I mean as hot as you can stand. The warmer, the better. It relaxes your stomach muscles, all of your muscles, relieving the tension that is brought from getting sick. This is something that I always share with the parents of children with CVS. I have used hot showers and baths to ward off episodes for years.

3. Eat Ice Chips Only

If there’s one thing that I have refrain myself from doing in an episode it’s chugging ice water as fast as I can. My stomach always feels like it’s on fire and the cold water makes me feel so much better. But doing this will only make you get sick again. This is why I start with ice chips because it gives your mouth and insides relief, without the immediate sickness to follow.

4. Find a Quiet Space

Again, like head migraines, CVS patients experience heightened senses and are sensitive to sounds, as well as light. Finding a quiet space is key to getting the rest you will need to get out of the episode. The heightened senses makes you feel like everything is more extreme than it really is.

5. Take Nausea Medicines

This is usually the first thing that I try. I take whatever nausea medicines I have to help in trying to abort an episode. Once you are in the episode, there is little that can be done to stop from getting sick. And even when I have been successful in warding off an attack, an episode happens eventually anyway, it’s just a matter of time. I carry Ondansetron with me wherever I go, in case I have an attack while I’m out of the house. It has saved me multiple times in restaurants or at events. Sometimes I will take Dramamine, although it makes me very groggy. It’s really helpful when I want to sleep in an episode, if you can keep it down long enough. Pepto Bismol is another go to.

6. Sleep

I read somewhere in my research on CVS that sleep somehow resets the brain over time and is what heals an episode the most. I believe it. Sleep is the biggest weapon against our disease. In fact, a lack of might even be what triggers one. I used to stay up super late and then wake up early every morning (I can’t get enough of life!). A deprivation leaves my immune system feeling weak and tired. When in an episode, sleep will come eventually, due to exhaustion of getting sick.

I get sick every 15 minutes, like clockwork, when in an episode. I can remember being two and a half hours from home and having one strike. I tried driving as close to home as I could get without passing out. I stopped at every off ramp, got sick, then drove another 15 miles. I didn’t make it but three cycles of that before having to pull completely off the highway, get sick, and passed out on a country road. My husband and father had to come rescue me.

Sleep will come, but it’s better if you can keep a consistent sleep routine that allows enough rest. I sometimes take naps during the day that can last for hours. Even though I think, should I be sleeping this much, I know that my body might require more rest, given the illness.

7. Untucked Blankets

I need a blanket or something over me in order to rest. However, I would recommend untucked blankets because one second I can be completely freezing feeling (heightened senses, again), and then feel hot, maybe even having a low grade temperature. The unpredictability with this illness is one of the worst things about it. You never know what to expect or when it will be brought on.

8. EME-BAGs (Warning: This one’s pretty gross to read, probably)

When it comes to getting sick, I feel anymore like I am an expert. That’s why I recommend EME-BAGs that you can find when you’re in the hospital. My husband has made it part of the routine to collect as many of those bags at the hospital that we can use for the next episode. I even got a pocket organizer that hangs off the side of my bag that I can then slip the sick bag into to keep it upright. It truly beats getting up and down and running to the bathroom. And it’s not as gross as a bucket, or ice cream tub, like I used to use. Not only that, but the bags travel well and don’t take up much room.

So there you have it, my top eight things that I do to try and survive a CVS episode. Do you have techniques that help you? Leave them in the comments below. The only good thing to come from having this illness has been connecting with others who are suffering and helping each other with our knowledge.

——————————————————
Thanks for reading! For more of my blog posts on Cyclic Vomiting Syndrome, see the following:

I Have an Invisible Illness called Cyclic Vomiting Syndrome (CVS)

10 Things To Prepare For The Next CVS Episode

The Next Trip Down The Rabbit Hole

Find me on Facebook, Twitter, Google+, Tumblr, LinkedIn, Pinterest, and Instagram

The Next Trip Down The Rabbit Hole

I just brushed my teeth for the first time since Sunday. It’s now Friday. My apologies, Dr. Hunter, my dentist. It is of no disrespect to you or even to my own body itself. Brushing my teeth is the last thing I want to think about when I’m in the middle of a cyclic vomiting syndrome (CVS) episode. Instead you’re on what feels like a constant wave of some kind. Kind of like the feeling you get when you’ve been on a boat for a bit and are standing on the shore, but you still feel like you’re waving back and forth. That’s CVS.

When I told my ten-year-old daughter, she drew this comic strip of what she visualized CVS doing to me:

This was the schedule that I was dealing with for three weeks leading up to now the second episode that I’ve had in a month (after not having one for almost two freaking years!!):

It wakes me between 5-6am.
I almost get sick, take nauseau meds.
Have to take a hot shower.
Back to bed.
Wake groggy around 7am.
Immediately take a hot shower that gets me through until around noon.
Go home for lunch. Don’t eat. Around 1, almost always get sick.
Take nausea meds and spend lunch time in hot shower.
Back to work.
Like clockwork, around 4pm, I feel super sick.
Race home.
Nausea meds, shower, bed.

On Monday morning, when my husband found me writhing on the couch in fits of nausea after having gotten sick in the hot shower just before, he knew that I had to go to the hospital. I had not yet recovered from the previous round that had beat me up just exactly one month before. This illness has an internal clock that only it knows. I haven’t done as good a job about tracking some of the aspects of it that maybe I should. While I always worry about the changes that makes to my body, such as the 20 pounds that I’ve lost in a month, or the hairs that turn stark white from trauma in puking so much, but instead should be looking at what days of the month they fall on; how far between; what times of the day do the attacks come on; what works to stave it off; medicines I’m on at the time; delays or changes to medicines; moon patterns? I don’t know. But there’s got to be more than what I’m seeing, and I just can’t figure it out.

So normally we would wait until well into the episode to go to the hospital because that’s then what knocks it completely. Usually, if we tried to go too soon, then I would just end up there again. Jason, knowing how much we had going on this week, knew that he couldn’t have me down and be tending to me the whole time. So he took me to our local hospital, where he knew I would get the care I need, and he could keep the wheels turning in our real life. He’s a smart and wonderful man.

I remember them getting the IV hooked up so that I could get fluids started. They then started giving me medicine. There must have been some kind of sedative because the next thing I knew, I was in a dream like state having an MRI done. Lots of times these kinds of procedures and sometimes worse, surgeries even, are performed on CVS patients. They think, oh it must be a tumor in the head, or maybe it’s their gallbladder, perhaps they just need their appendix out, maybe it’s an ulcer. Truth is, it isn’t any of those things.

Then there’s the doctors who say, it’s all in her head, she needs a psychiatrist, she’s making it up and I can’t see her until she’s seen someone else. I then go to the psychiatrist, because that’s the hoop I’m given to try and get the help I need, and the psychiatrist tells me, “You’re the most self aware person that I’ve met in a long time. It’s quite refreshing actually. I don’t think we need to continue these sessions any longer.” Then I asked him if he needed to get anything off his chest, just to be polite.

Anyway, the MRI didn’t hurt but it didn’t change anything either, just another dollar or two on the hospital bill at the end of the day. They kept me on fluids and gave me anything I asked for, including moving me to another room that had a shower and brought me a shower chair that I could sit for hours in if I wanted. Even the sweet hospital CEO brought me a little gift and hand written card. Then a respected doctor in our community came in to say that he’d taken the time to look into my disease and had a conversation with my specialist at KU. He specializes in migraines, which my disease is also known as abdominal (stomach) migraines. Knowing that I didn’t have a primary care physician here locally, and had just been seeing my specialist in KU, he suggested that I switch to his practice and I agreed.

So after thinking that I would be seeing my specialist at KU Med, I now have a local specialist right here in Excelsior Springs. He’s having me continue my mirtazapine and zofran, but adding metoclopram (reglan) and nortriptylin. He’s also switching my birth control, which was an estrogen, to an IUD, progestogen. I literally pinned a chart next to the side of my bed so I could make sure I was going to be taking everything correct. In fact, we need one of those pill divider boxes that old folks use to set next to our bed and look pretty so we can keep everything organized. This is the raddest one that I could find on Amazon, but it’s only for one day. We have a local plastics maker that I might have to prototype a design that is cool and mad sell to all the millenials dealing with chronic illnesses and such.

Anyway, if you want to sleep at night while taking these medicines do NOT, I repeat, do NOT read any of the side effects that could come along with the amazing help it brings you. Because I can assure you…that I did…Not….So it’s probably best that my medicine makes me sleep because there is so much to look forward to if I had any adverse reactions, y’all.

So now I hit restart and try all over again. A new round of medicines, new doctor, and a new me. Wish me luck.

I Have an Invisible Illness called Cyclic Vomiting Syndrome (CVS)

10256753_10202663410339571_5418300509954300377_o

I happen to have a rare, chronic disease, called Cyclic Vomiting Syndrome (CVS). The name itself is terrible enough, but the effects that come along with the syndrome are even worse. It’s something that I’ve had all my life, but not to the extreme of which it has shown itself the past 8 years.

Those who have CVS, a majority that are children, will feel nauseas, get sick, and then are unable to stop. Our bodies then run a cycle of getting sick continually until the episode has run it’s course, and then we are well again. We will sometimes get sick multiple times an hour, lasting days, and often weeks, until then slowly we start feeling better again. The next part of the cycle is to then go through a recovery period, after having lost weight and nutrients to our body that are important for us to live. Then we go through a period where we are fine, and then the symptoms start coming on (hiccups, nausea, dizziness, headaches, sensitivity to light, irregular bowels and sleeping) and the cycle will start over again.

If you’re familiar with migraines at all, then you’ll know something about CVS. We have the same symptoms and the doctors are unable to detect, like in head migraines, why stomach migraines occur exactly. To get through, we do a lot of the same types of things for relief: make the room dark, low sound, take hot baths, sleep. It’s very difficult to keep anything down, even water, so much of the time is spent trying to rest between the sickness. Almost every time I have an episode, I have to be admitted to the hospital to be rehydrated. The longer that I can wait until the end of my spell, the greater the chance of it knocking the episode altogether. Sometimes I’m left with no choice, though.

10255215_779626405383343_4004564030293130412_n

I struggled not knowing what was wrong for three years before going to the Mayo Clinic in 2014 (pictured at 90 pounds above with friends I made while at Mayo and my husband Jason). The story of that struggle leading up to the diagnosis is one in and of itself, but this is a recovery story. After being diagnosed, I was assigned a specialist from KU and was administered medicine. For the first time I felt like I had been given something that had made a difference. I celebrated a year episode free last year on July 26th and was prepared to do the same this year for two years when I got sick again, on July 23rd. I thought I would never get sick again. Truth is, the doctors told me that I would. I just didn’t want to believe it.

CVS is very difficult to detect, for all tests that are done on the body show that everything is normal. There is a possible hormonal imbalance, that can be genetic (my father and cousin also has this disease), which makes finding a cure difficult. This is a disease that dates back to the 1800’s, and in some studies has been shown to affect one in every two thousand individuals. It’s been stated that there are probably more people who are affected by this disease, but it is often misdiagnosed.

I hope to work to find not only a cure but support for those who are living with this nightmare of a disease. Especially considering children are the ones affected the most.

10255099_778963782116272_6330228833266710748_o

1897808_780312035314780_7818681850690651802_n