The Connection Between CVS and Migraines

CVS_Migraines

I started my new medical adventure today with my first visit to my new doctor. He discovered me in my poor condition while treating me at our local hospital. I have been suffering recently from flare ups of my rare, chronic disease cyclic vomiting syndrome (CVS). This doctor has given care to our area for a long time and is a reputable doctor, so I was surprised when he told me that he’s also a migraine specialist and believes that is what I am suffering from.

Not too long ago, I had actually read a study connecting cyclic vomiting syndrome and migraines. In that study it stated that the first connection between the illnesses was in 1898. So when my new doctor told me that he wanted to treat my CVS as a migraine to see if it helped, it made a lot of sense to me. There are many similarities between the two and sometimes the illness is referred to as abdominal migraines.

For instance, those suffering head migraines will often have signs beforehand that tell them they are going to have an episode. CVS patients also have this phenomenon. Senses heighten and we become sensitive to things like fluorescent lights, change in vision, and feel off in a way we often can describe. I will lose my appetite and will have a hard time even wanting to eat. My sleep is always disturbed, waking often in the early morning hours of 3:00 or 4:00am, despite knowing I need rest.

When an episode does flare up, treatment is often the same. The length of time that it takes for a patient to get through it varies from person to person. No one is really sure what exactly triggers it to come on, although there are hypothesis’ out there of stress being a link. When in an episode, we wish to have it dark and quiet, if possible.

My doctor today explained that when having a migraine, our blood vessels are actually constricting, causing us to have pain or nausea. He said that there’s an imbalance in hormones, too, that are causing my episodes to flare when I have my period. I have actually been using birth control to skip my period, after my episodes were consistently coming every month apart when my period would start. This worked for nearly two years before my episodes started to flare again in late July. My last two episodes were only 3 weeks apart. Since then, I have lost almost 15 pounds. This led to another conversation about the importance of not becoming pregnant, because of the risk it could pose to the child. We are going to try me on Mirena, an IUD that will be implanted, to stop my period from triggering an episode.

Another thing that we talked about was exercise. He said part of the treatment would be that I would need to exercise more regularly, because it helps with the blood vessels that we talked about earlier. He said an hour a day, even just going for a walk, would be good for me.

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For those reading this who may be suffering from CVS, the only thing I have been taking that seemed to work immediately was mirtazapine. I was only taking 7.5mg, one time a day. Now, in addition to the mirtazapine, I am taking 50mg of nortriptylin, which is used to treat migraines.

You might consider having a conversation with your doctor about the possible connection. The reason that I say this is because when I have an episode, they are on average 9-11 days long. While in the hospital with my last episode, on day 4 my new doctor gave me nortriptylin and the next morning I was alert, awake, and discharged to go home. So by day 5 I was well enough to be released.

Since that time, I have only gotten better. For the last 8 days, I have marked having a good day on my health chart. I will continue to write about this illness, in case it helps even just one person who might be suffering.
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For more of my blogs about CVS see:
8 Things I Do When in a CVS Episode
• 10 Things To Prepare For The Next CVS Episode
• I Have An Invisible Illness Called Cyclic Vomiting Syndrome
• The Next Trip Down The Rabbit Hole

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Do you suffer from CVS? Share your story with me below and be featured on my blog!

 

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.

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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

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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.

10 Things To Prepare For The Next CVS Episode

Having cyclic vomiting syndrome means that it’s not a matter of if, but when you’re going to have your next episode. This means that using the time that you are feeling well is super important for making sure things go as smoothly as possible when you are down with a spell. Here’s a list of ten things that I always try to do when I’m in the phase of the illness that allows me to be on my feet:

1. Get Life Back in Order

Everyone’s episodes seem to last a different amount of time. When I get sick, on average I am down at least 9-11 days at a time. This is 9-11 days of dry heaving, sometimes inability to speak, and certainly unable to function normally. Often this leaves me feeling behind in my work, behind in housework, and behind in my health overall.

Using the time that you’re well to first recover, then get into a routine has really helped me. I use Sunday evenings before the week begins to do things like plan out my week in a planner. I mark each of my meetings and where they are in my planner to make sure that I’m not planning too many next to each other in case I get sick. At the moment, I’m having a difficult time eating, even when I’m in my well phase. I might leave an hour after a lunch meeting to go home and get in the shower for 30 minutes, so that I can get through the rest of my work day without falling into sickness.

Part of my routine is working to keep up with my house so that even if I do go down, it’s already kept up on so it’s not so bad when I get back to it. Included in my plan for the week is a chore on each day. This is to break down the work, so that I don’t feel like I have to spend my weekends cleaning, and so that it doesn’t overwhelm me.

Here’s my list of chores for each day: 
• Monday – Empty all trashcans and take to the curb
• Tuesday – Kitchen
• Wednesday – Grocery Store
• Thursday – Floors
• Friday – Bathrooms
• Saturday – Bedsheets/Laundry
• Sunday – Prepare for Week: Pick out clothes, write out plan for week, schedule social media posts

My favorite planner is Tools 4 Wisdom, which you can find on Amazon.

2. Eat

Eating is one of the most difficult things about my life. Not only is it hard for me to eat, because I always feel cruddy after, but it feels like everything is associated with food, making it that much harder. Everyone wants to meet for lunch, or business is centered around a luncheon or dinner of some kind. Eating together is one of those pleasant things that brings people to a table and builds relationships. I get it, it’s an important part of our society and how we function, but for someone with a sickness like this, it can be trying.

That’s why when I am feeling well enough to eat, I do! And I am even taking medicine that helps me in gaining weight, because when an episode hits, I will often lose ten pounds or more by the time that it is over. This is why harvesting calories like a squirrel does before the winter is key for me in surviving the spell. At one point in time I fell below 90 pounds, looking like my husband described as a “Holocaust victim.” It scared me and I haven’t minded having a few extra pounds on me for when it happens again ever since.

Also, I feed my body whatever it craves and trusts that it knows best. That’s why when I get lectured about not eating salsa, something spicy, stuff that’s acidic, or get asked to try any one of those diet crazes I just nod my head and smile, then go do whatever I was going to do anyway. Because I know that it’s not about what we eat that causes us to get sick, it’s more an attack on our central nervous system that is the problem. Sometimes just the sensation of eating will cause us to trigger and go into a spell. So eating what you can, when you can, is important for being ready when you do go down again.

Things I like to eat when coming out of a spell to ease back:
• Fruit: peaches, pears, applesauce
• Rice: rice with butter but not any hard grains, because they’re hard to digest
• Dairy: yogurt, pudding, sherbet, milkshakes
• Chicken noodle soup broth
• Weird things I always like: KFC Cole Slaw, Fruit Rollups, Skittles

3. Journal

I try to keep a journal of each of my episodes to look back on. This has been important for a number of reasons. Not only have I been able to get a better grasp on patterns that occur around my episodes, but I have it to share with my doctor more easily than explaining it twenty times over, like hospitals/doctors often have you do.

Amazingly enough, Facebook Memories has helped me a lot in identifying trends with my illness. For instance, by using the “On This Day” feature, I found that I had been sick multiple times in years past at the exact same time. If nothing else, maybe that can help me to keep better care of myself and not travel during the times that I might be more susceptible of being sick. I certainly can avoid planning events and things that might bring stress during those times.

Here’s a list of what I track:
• Length of each spell (which is how I know my average downtime)
• What I might have been doing that day
• If I have a lot going on at the time
• Medicine that I am taking and if there were any interruptions in taking it
• Any other thoughts that should be noted, no matter how weird they might sound

I might start doing a daily health journal that includes how I felt that day overall, if there were any health mishaps to note, what I ate that day, bowel movement irregularities (gross, I know), and medicine that I took. Maybe then I could start to find better trends in my episodes.

4. Work Ahead

We are all busy people and many of us who are suffering from this illness are trying to hold down jobs and keep our families functioning at the same time. That’s why working ahead as much as possible is extremely important for staying successful while feeing down. Whenever I can at work, I try to plan my months ahead. As a director for an educational foundation and grant writer, I am placed with a number of different deadlines that I am forced to keep for the sake of my business.

Here’s a list of things I try to do to keep up at work:
• Plan ahead – Monthly calendars include all deadlines and goals for what I want to accomplish that month
• Work ahead – Don’t procrastinate on projects and move them off your plate as soon as you get them, if possible
• Communicate – Keep colleagues aware when you’re having down times, so they can help keep things moving
• Backups – If I’m scheduled to speak, I might have a back up plan/speaker, in case I get sick unexpectedly
• Work efficiently – When I’m there, I don’t mess around, I stay focused on the job and use my time as efficiently as possible.

5. Visit the Doctor

Each time I have an episode I go and visit my gastroenterologist specialist to review the spell. Not only does this help me in getting my journal in order before going to visit, but also allows the doctor to see better what I’m dealing with. It’s at that point in time that you can determine if there need to be any adjustments made to your medicine or if maybe something you were doing at the time may have triggered the episode, providing insight for your doctor in some way.

6. Bills

Inevitably, no matter how much I try to go without a trip to the hospital to be rehydrated during a spell, I almost always end up there. This means that medical bills can quickly start to catch up with you if you’re sick for any extended period of time. At one point, I was having spells every month and a half (like clockwork), forcing our medical debt to go higher and higher.

I’m lucky enough to have a hands-on husband who takes care of this for our household, so he usually contacts the hospital and finds out what types of payment plan he can set up for us, so we are able to pay it down without any kind of penalty. Also, setting up automatic bill pay would be a great way for you to keep up with your bills, even if you’re down with an episode.

Me in the hospital a few years ago. Try to keep your sense of humor!

7. Prescriptions

After a spell, my nausea medicines are usually low. This is when I stock up on things like Zofran, Pepto Bismol, Dramamine, and making sure my migraine medicine is filled. Getting everything back into the house for when the next round comes is key so you’re not waiting on it when you need it most.

8. Med Bags

Obviously with this illness you throw up a lot. My episodes always force me to throw up every 15 minutes, whether I have anything in me or not. Even if you don’t have anything in your stomach to get sick, your stomach creates bile, which you will throw up. I would either be back and forth between the bathroom or probably sleeping on the floor if I were to try and use the toilet each time I threw up. This is why we either use an old, plastic ice cream bucket that my amazing husband washes out for me over and over again, or med bags from the hospital.

Here’s a trick that my wonderful husband figured out that has helped us out a lot. When/if you go to the hospital during a spell, before you leave, grab a handful of those med-bags that patients get sick in. They’re perfect for using during an episode, and are rather expensive if you go to order them online. If you just grab what you’ll need for the next spell while you’re at the hospital the time before, then you’re set for the next one.

9. Employer

I know that many who have this illness don’t talk about it with their employer at all, in fear that they might be let go. Fortunately, I don’t feel that threat from my employer, and have always felt like I’ve had the support that I need. That is why I do my best to keep my employer in the know about what is going on with my illness. I try not to go into any long amount of detail (simply to spare them the disgust of it all), but certainly let them know if I’m not feeling well that day, or can sense that I might get sick sometime soon, or let them know if I feel I need to leave early. I believe having open lines of communication regarding your chronic illness with your employer gives them what they need to continue the business/organization as successfully as possible. I feel it’s my responsibility to them as their employee.

10. Family/Friends

Certainly spending time with your family and friends is the most important, despite being listed last on this list. Using the time that you are well to enjoy events together, go on vacations (if able), attend church, and catch up with your friends is key for maintaining your relationships. There have been times in the past that I have had to miss special school events for my daughter or going to a Royals game with my family. That’s why cherishing those moments you can spend together when you’re well is that much more important.

My husband with his arm around where I should be during his parents 50th Wedding Anniversary.

Our family on a successful vacation to Florida for Walt Disney World

I hope this list might help those who are suffering from cyclic vomiting syndrome in some way in preparing for their next bout of illness. If you are interested in reading more of my posts regarding this disease, click here to see my experience and struggle in fighting it. 

Please share with me your experiences, leaving any tips you do to prepare in the comments below, and if you have any questions. We are all in this together and can help one another to get through. Feel free to connect with me on Facebook, Twitter, Instagram, Tumblr, Pinterest, or Google+. Also, I have a cyclic vomiting syndrome board on Pinterest that might be of interest to you, click here.

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

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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.

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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.

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