Cyclic Vomiting Syndrome

I have Cyclic Vomiting Syndrome. All of my mental health problems stem from this disorder (I think). About 5 years ago I started vomiting. We all naturally thought I had a stomach bug. I began a pattern of vomiting about 50 times per hour for an average of 5 days every month. And I mean I can't hold down one drop of water or one morsel of food until the episode is over. It is pure hell to live through. You know when you vomit and you sortof feel better after you yak? Well not the case with this disorder. The nausea is more intense than the worst food poisoning. It does not subside. When there is nothing left to vomit I simply dry heave for hours. I drink gatorade to ease the heaving. It comes back up tasting less awful than bile does. I have to be hospitalized each episode due to getting severely dehydrated and severely hypokalemic. Heart attack low. Scary stuff.

This pattern continued for almost three years before we found the right medication. Imagine being in the hospital for a week every month and they don't know how to help you. The docs gave me every med in the universe. They gave me the strongest antinausea drugs that are given to chemo patients. I threw up in their faces. Nothing worked. We went through so many meds before I got on nortryptyline. I haven't vomited in over a year after taking that med. Thank God.

It is a rare disorder and hard to diagnose since it is a diagnosis of exclusion. There are no test that will be abnormal due to this. I had to go through so many docs that tried to dismiss me as a drug seeker or bulemic. I also had my gallbladder removed when it had nothing wrong. This is a true vomiting disorder. It is not something that I did to myself. This happened b/c there is some sort of disconnect b/t my brain and my gut. We just don't know details.

I have concurrently been diagnosed with autonomic degeneration which means that my nervous system is degenerating and not working properly. Not much we can do about that.

I hope that no one else suffers with this horrible disorder, but if you do, I certainly know what you are going through. The anticipatory anxiety can be one of the worst things about the disorder. You are so scared of when the next episode will start that it begins to consume your life. You have to back up and re order your life so that it will still work when you are vomiting. Not an easy thing to do.

When you have CVS, life is one puke after another.

Thank you for posting about this, La Doctora. I'm sure I'm not the only one who's never heard of CVS.
I'm sorry that on top of the disorder itself you had to endure such dismissals.

The Mayo Clinic was saying it's thought it might be related to migraines too; what fun!

I had Ménière's and did not like the vertigo and vomiting. I can't imagine what you're going through. I hope it wanders off eventually and your autonomic degeneration doesn't contribute to it and stabilizes.

That's sounds horrible for you ((la doctora)). I've never heard of this either. It must have been exhausting throwing up that much. How did you survive and keep food down? Will you have this forever?

Did the doctor ever test you for sphincter of oddi dysfuntion? this can cause unrelenting vomiting. Saw it on mystery diagnosis.

[quote=Perna;1347394]The Mayo Clinic was saying it's thought it might be related to migraines too; what fun! quote]

Yes sometimes it is called an abdominal migraine. I get these weird pains randomly throught the day that feel like someone is stabbing me all over my abdomen with little needles. But luckily I don't usually have much pain during the actual episode. Some people need morphine when in episode but thank God mine has only hurt a little. The nausea is bad enough and I feel so bad for the people that hurt while they are wretching. The meds that I am taking that have been helping are also used as prophylactic for migraines too. There is still so much to learn about it.

It is the most exhausting experience in the universe. When the vomiting finally stops several days later, I can start thinking about life again, but it takes several more days to get the energy back to even walk around much.

I don't keep food down. Period. I lost so much weight it was unreal, and I wasn't overweight to begin with. I think I was down to 120 at my lightest and 140 was my teen average. My parents thought I was gaunt and drawn looking. The only way I stay reasonable hydrated is from chugging gatorade and throwing it back up. It doesn't stay down except for a few seconds, but I feel like that keeps me alive. And I go to the hospital for fluids if I vomit non stop for an hour. One hour is what I give myself at home. Longer than that and I have to go to the ER.

I will probably have it my whole life. There is no known cure. Some people seem to grow out of it and others don't. The fact that I acquired it as an adult rather than a child seems to indicated that it won't be going anywhere anytime soon. But the good news is that the meds are working for now. It has been 1 year and 3 months since my last episode. If I can space them all out that far I am a happy camper. Anything but a week of every month. I am counting my blessings right now b/c it could be much worse.

Wow that is actually something I haven't heard of. I have literally had so many tests done on me I didn't think there was anymore, lol. I have had a scope run down (and up) all orifices of my body. I'm not sure if this was something that anyone mentioned, but would it be ruled out by visual examination with a scope? If so I am in the clear. If not, I finally have a new idea for my docs!

Thanks for the suggestion!

And I love Mystery Diagnosis! I think I should be on it!

This won't cure you - I recommend real ginger tea. It soothes the stomach and helps nausea. Peel a 1 inch piece of gingeroot, slice thin and boil in 11/2 cup water for 5 min. Add sugar if you wish. I hope your medicine continues to work for you.

Great suggestion! Thanks for that recipe, I will definately take note. I find that gingerale helps me when I am nauseous too. I also have some ginger candy (that is gross) but it also helps. One of the great nautural substances that can really help me! Go ginger!

I think the episode was called "the girl who couldn't eat". Her name was Danielle and she had severe vomiting all the time. Doctors removed her gallbladder and it helped for like a day and then the vomiting continued. I don't remember if they diagnosed it with a scope or not. Maybe you could get the episode somehow. when i read your post i thought of that girl. Her life was completely taken over by the vomiting.

Yes it seems that they have already ruled out the sphincter of oddi disfunction with me.I fit the profile of a cyclic vomiter to a T. But keep those suggestions coming. I'll be happy to find out there is something that can be done about all of this.

Yes, the abdominal migraine is a different type of migraine, one kids often get. Mayo was saying the "real" migraine/headache is likely to be a family trait of those with cyclic vomiting. Apparently the CVS stomach pain is worse in adults than children:

http://www.aboutgimotility.org/site/.../cvs-in-adults

Yes and also the migraines are usually linked to the mother's side of the family. I fit that too. I have never had migraine headaches myself, only the abdominal ones. But my grandfather on my mother's side had "cluster headaches" (a type of migraine) for several years. He doesn't have them anymore. I wonder if that is any type of clue that says I will eventually "outgorw" this too?

This disorder is rare in children and even more rare in adults.

I have nothing to add other than I am sorry your vomiting so bad. I wish your tummy to be better!!! Crew

I'm bumping this thread up bc I simply don't have the mental energy to write about it again. I have done very well over the past few years. No "true" episodes have put me in the ER for quite awhile -- until this past weekend.

And it was true to form, happening when I have positive stress (ie. going for a long reunion weekend with my best friends in the world). Positive stress (happiness excitement) seems to always be my most consistent trigger. Although, colds and allergies trigger episodes too, it would always ruin my anticipated vacays or other fun things for me.

I have been feeling more nauseous over time recently and it is getting worse each day. My anxiety levels are climbing so quickly bc I am so terrrified that I am about to enter the pattern I was in before of becoming hospitalized 5 days every month, and sick sick sick on the days between.

I have a new job. I am actually practicing veterinary medicine now for the past six months. I changed jobs because I felt like the vomiting was behind me and I could move on and do what I intended to do with my life. I wanted this so much. I am loving it, but at the same time the circumstances are making things so very stressful for me! I am worried that this stress is sending me back down that road again.

They stopped my episode in the ER the other night after 8 hours of DEEP sedation. It took two tries on the protocol before things worked.

I feel like I did before. I am terrified. TERRIFIED!

And my wonderful, supportive husband is trying desperately to find work for himself, but we are having terrible luck. It's all on me... so I have to hang on.

I haven't visited here in awhile. Unless there are new members that have CVS that I am unaware of, I am the only one here.

I just needed to vent how very terrified I am. I have had 3 full blown panic attacks today, and I refuse to take another Klonopin, I have already had 2 mgs today.

I'm sorry you are having trouble again; I hope you have it stopped for the time being.

http://digestive.niddk.nih.gov/ddiseases/pubs/cvs/

Are you a member of the Association? http://www.cvsaonline.org/

Thank you Perna. I actually AM a very proud member of CVSA. If not for that organization and message board I might still be looking for the right drug to break my episodes... I got a lot of support there and they really helped when I needed it, but mental illness is such a touchy issue on those message boards because so many of us are accused of making this up, or our disorder being only in our heads. I know that it is a true medical disorder, but it is also true that it has affected my mental health as well. I feel more comfortable talking with you all here about mental health issues.

Thank you for your response Perna...

Sorry to hear your CVS is back. I can understand you being upset.

I get a little nausea and vomiting if I eat too much. If I can get to my Levsin in time (1-2 little pills under the tongue) I can avoid the vomiting though. Also accompanied often by diahhrea. I can get that to the incontinence level. Ah, but I have a pill called lomotil for that. It's 1-2, swallowed, to slow down the gut. Also have a drug called Cholestramynine, which I can mix with water or juice and drink that binds with bile acids and fixes the too-rapid gut. Doc thinks the vomiting is a stomach-emptying issue from years of diabetes (autonomic neuropathy) and the gut is from having my gall bladder removed and having too much bile in the intestines. There is a drug called Reglan that I can take for the stomach-emptying issue, but it has potential side effects of tardive dyskenitia, among others, so I started just trying to eat smaller meals, which is better for me anyway. And then I run into people who abhor taking any kind of pills...huh? So glad I have a pill, to fix what ain't working quite right.

Hoping that your meds will put you back in control again. Such a shame it occurs with happy stress too! Sometimes life just ain't fair! You have a great attitude--we can all learn a lot from you!

That sounds absolutely awful. Before I was diagnosed with Crohn's, I suffered 3 months of non-stop vomiting and diarrhea. I was pretty much resigned to the toilet with a bucket in front of me. Not fun, and I feel for you having to deal with this.

I too need to take this drug to keep me out of the bathroom more than in it.

Hey,

My names Corinna and i'm currently a 19 year old college student at Temple University. I want you to know that you're not alone. I was diagnosed with cyclic vomiting disorder at the age of 11. My first couple years with is were a struggle. I would make beds for myself on the bathroom floor. Sometimes the episodes would last one day and sometime they would last up to a week. I grew out of cyclic vomiting a lot as i got older. As soon as i started college, it came back again and I was diagnosed with cyclic vomiting as an adult. After visits to the hospital every few weeks it became my routine because I'm sure as you know, when you vomit you become so dehydrated. The nausea would wake me up at 4 or 5 am and then i would be retching/ puking for hours until i eventually would have to pick myself up, throw clothes on and get to class. Then after class i would be right back in the bathroom puking again. I mentioned that I've had this disease since i was 11, so eating has become a huge problem for me and i now struggle with an eating disorder on top of it. Although i have an eating disorder, its not like a normal eating disorder. The best way the doctor could explain it to me is that i got so use to being scared of eating because i would be scared that i would have an episode, that my brain now views food as an enemy. Now I'm sure you can imagine what living with cyclic vomiting syndrome and an eating disorder could be life. Im always under weight, i always have circles under my eyes from malnutrition, i miss classes when i don't have the energy to walk to class because i haven't eaten in days. Its a constant struggle i deal with everyday. I understand your pain and i want you to know that you're not alone. Sending my love

Corinna

I have never heard of that. Interesting. I have Bulimia myself. But I throw up all the time even when I don't want to. I have a gastric bypass and they think it is due to that. My lowest weight was 67lbs at age 16 and I went up to 275 lbs when I had my bypass. I am now 174lbs. You would think I would lose more weight with all the vomiting but I guess this is where I am supposed to be.

You have my sympathies and I am glad the meds are working for you!

Foxy

I once had a very close friend who had this disorder. She found stablisation on stemazine and ativan, but it took many years before they found that combo worked. It was by pure fluke that it worked... (PM me if you want to know the story). She also used marijuana to help her cope in between episodes and help her eat. Eventually I convinced her to go to a therapist, I dont know how she is going now, but I pray better. This thread actually makes me feel I should make contact with her again. She lived a very lonely life.

Are you in therapy? Not because I suggest that as a cure - but as something to help you with the anxiety that accompanies this disorder.

Weird question, but do you have any history of porphyrias? Have you ever been tested for acute intermittent porphyria? I have a family history of this, and it presents similarly, but usually with severe abdominal pain. Just curious. You may not have the correct ethnic background, I'm not sure, it almost always presents in northern Europeans.
Also, have you tried triptans as abortive therapy? What else have you tried for prophylaxis? Propranolol? Topirimate? Other anti-convulsants? Cyproheptadine?
I wanted to let you know I have a severe neurogenic pure autonomic failure so I feel you there. Can I ask, what meds are you taking for it? I'm on droxidopa, midodrine and florinef plus 3 X/wk saline infusions and it's still poorly controlled. I actually do have an eating disorder on top of it, so my vomiting is of my own volition
Sorry you're having to deal with all of this.