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Anyone familiar with cyclic vomiting syndrome?


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I am pretty sure this is what I have and have had since I was a kid. I’ll 44 years old now. I finally went to a doctor to try to get to the bottom of my stomach issues about ten years ago. I got my gall bladder out but tests didn’t show any other issue. My dr. told me she thought I wasn’t being careful with food safety and making myself sick. I knew it wasn’t that but I gave up on finding an answer. 

I think I’ve used my google skills to self diagnose myself (I know, I know). It appears diagnosis involves ruling out a lot of different things with extensive testing. I’m not ready to follow through with all that right now. I am wondering if anyone here is familiar with with this disorder and anything that has helped. I’m willing to change my diet, other habits, etc to see if that helps. 

 

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That sounds horrible. Is that the one where it's actually migraines, but they manifest as vomiting? I know someone with that. It sounds genuinely horrible. Really, anything that causes someone to vomit a lot sounds miserable. I hope you get it figured out.

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1 minute ago, Farrar said:

That sounds horrible. Is that the one where it's actually migraines, but they manifest as vomiting? I know someone with that. It sounds genuinely horrible. Really, anything that causes someone to vomit a lot sounds miserable. I hope you get it figured out.

Thank you.  I will be absolutely fine and then I’m vomiting and literally have to climb in bed with exhaustion. I have to climb into bed and sleep it off and then I’m fine the next day. Sometimes it does manifest as a headache. In that case I wake up with a headache and then start vomiting and have to sleep it off. Like 8 hours dead to the world sleep. It actually took me a while to make the connection with the headache because once I started puking I kind of forget about the headache.

It is very frustrating because I’m normally a tough lady. I’d rather stand than sit and I’m very active and hard working and never even one to take a nap. But when this hits I literally can do nothing but sleep (and puke). Then it passes like nothing happened. My poor kids have had too many days when they have been on their own because I go down sick. 

Thanks for the compassion. I’m don’t like going to doctors and tried once to get to the bottom of it.  I guess I’ve gotten used to it being part of my life. But I’ve had some frustrating episodes of it lately where it feels like it is disrupting my life more and more. I have actually wondered lately how I would ever hold a traditional job. It’s not the kind of thing you can suck up and deal until you clock out. 

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I know from this person that apparently migraine treatments can help. He's on something for it apparently that has lessened the frequency of the episodes. I don't know a ton, I just know it's miserable when it's happening.

Really, the only upside of getting this diagnosis was that once they knew, he knew it wasn't anything contagious and knew that when it was over, he didn't have to limit exposure with people or family or anything. But at this point, it sounds like you already know that.

Since there are apparently treatments, I would go through the process of trying to get a diagnosis. But get a new doctor. Any doctor who tells you after years of repeated vomiting issues that you are just lazy about food safety is a jerk and never going to take you seriously.

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I think it depends on how much this is bothering you, frequency, side effects, etc.  Vomiting more than rarely may lead to problems (electrolyte disturbances, bleeding, etc).  If you have vomiting more than rarely, I would consult a gastroenterologist and pursue the tests.  It’s a not so common diagnosis that needs a specialist.  Associated diagnoses could be abdominal migraines.

I think a good first step is starting a diary to assess patterns- is it associated with stress, illness, dehydration, certain foods, exercise, hormones, etc?  You may see an obvious clue.  You could also do an initial consult with GI and be upfront and state you’re not interested in a procedure and just want to explore possibilities.  A lot of GI diagnoses are based on testing, though.

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Our son had this. About every week on schedule from the time he was three. Took several years to diagnose. Giving him ibuprofen as soon as the headache helped. Using ametryptolene (sp?) eventually helped break the cycle and he grew out of the worst of it at puberty. He still has some migraines but more typical. They told is that females tend to be more hormonal related.

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I personally think anything severe enough to impact your family and your ability to function normally should be explored to test, diagnose, and treat if possibly.  Doctor appointments are worth it to help you and your family have a normal life back if there’s something that can treat this.  (Hugs)

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My son (21) was diagnosed when he was 15. For him, his is likely caused by a mitochondrial dysfunction. This is the most common cause, although there are other causes. Dr. Richard Boles is one of the few experts on this condition. He is a good resource and has published some information, mostly as it relates to mitochondrial dysfunction. Ds went into remission (well, almost) when he began treatment with COq10 and other supplements that target mitochondrial function. There is a link below about this treatment. He now has an occasional "mini" episode. His last full-blown attack was last Christmas (which was aborted). During an episode, he takes four things at onset (if not taken in time, it's too late and the episode can't be aborted). They are hydrocodone (pain), Zantac (control stomach acid during vomiting), lorazapam (anxiety, relaxation), and ondansetron (nausea). He takes the supplements daily to prevent episodes.

 

http://cvsaonline.org/2014/02/07/cyclic-vomiting-syndrome-and-mitochondrial-dysfunction-research-and-treatments/ (Some information about causes and Dr. Boles)

http://cvsaonline.org/message-board/ (Message board for CVS)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2825193/ (Medical publication about treatment)

 

It's a diagnosis of exclusion with all episodes occurring in a pattern. Often the episodes can be linked to things such as:

change in weather

stress

excitement-something happy, (birthday, vacation)

fever, cold, sickness

If you have any specific questions, I'd be glad to answer if I can. Hope this helps.

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Yes, because it's messing with your family, you need to brave the doctor and get a diagnosis. If you're pretty sure this is it, I'd definitely do it. Take your dh if he'll fight for you. I hate it, but doctors are more likely to listen to men telling them that the women are really in pain than the women themselves. You're not trying to prove anything - you just need to be treated expediently.

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I have a friend who has it.  He has usually had to go to the ER once or twice a year.  He has some success heading off attacks if at the very first symptoms he uses ativan and zofran, but it's not a hundred percent.  It really is a horrible thing.  Migraine preventatives work for some people.  It is considered to be on the migraine spectrum.  

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I agree that I should get to a dr and pursue this. I just also know myself and know I am likely to drag my feet. I could start addressing a diet change in the meantime. 

I definitely recognize some triggers. Getting overtired and monthly hormonal changes are obvious triggers. But a month ago I had a cold and it started. Seriously a cold is so much stress that my body revolts by vomiting. ???

I have started keeping notes of when it happens. It is one of those things that when I am going through it, it is miserable but as soon as it is over I put it out of my mind. I do have a new doctor now and while I have only been once and rarely go for anything maybe I’m ready to start down this road. When I think about how long I have lived with this, it makes no sense that I have just accepted it as something I just have to deal with. 

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And also, know that most doctors aren't familiar with CVS. My son's gastroenterologist  was adamant that ds vomiting was caused by reflux. I knew from the hell that my son was going through that this was no reflux. It was hard to convince the doctor that it wasn't normal vomiting. It was horrific. And, yes, you spend the entire day after in bed white as a ghost and unable to eat. It's something that it takes days to recover from....it's awful.

I would recommend that you start keeping an extremely detailed diary. What did you eat before? What happened in your life hours before? What were you doing at onset? What time did it start? End? How many times per hour did you vomit? What meds you took?

See if you can show a pattern. Episodes starting at the same time and ending after the same number of hours each time. If everything else can be ruled out, and you can show the cyclical pattern lasting months and months, that's how it's diagnosed.

Find a doctor if you can that will help you and not blow this off. A neurologist is a good place to start if you can see one. And you can take your diary with you.

Migraine meds do help some people, but it depends on the cause of the vomiting. If it's mitochondrial, migraine meds probably won't help. They didn't for my son. It makes sense that the mito cocktail supplements helped him...which helps to confirm that his may be a mito thing. (That and other factors also help to confirm).

I think this is significant too: If you can take abortive meds IN TIME (literally knock yourself into a deep sleep) before the episode takes hold, AND you fall asleep and abort the whole thing, THAT helps to confirm CVS. If you are vomiting for some other reason, you are still going to vomit whether or not you take something to make yourself go to sleep. The important thing is If you have CVS, you need to sleep undisturbed to abort the whole thing.

My son experiences horrific pain in his abdomen along with the vomiting. If you don't have this horrible pain, it's easier to fall asleep if you take the proper meds.

Ds has ended up the in ER a couple times. Luckily, they were fantastic and gave him the proper treatment.

 

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Teachermom, I've just read your other replies. Some of what you are posting does sound like cyclic vomiting syndrome. If you decide to try COQ10, it MUST be a quality brand and not just something you pick up at Walmart. We use Jarrow. This one:https://www.amazon.com/Jarrow-Formulas-Promotes-Cellular-Production/dp/B0013OX8KQ?th=1

It's crucial and Dr. Boles has published much about the importance of using only certain very high-quality quality brands. 

 

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Indigo Blue- thank you so much for all the info. I really appreciate it and I am really sorry your poor ds and you have dealt with this. 

Interesting what you shared about abortive meds. I do keep ibuprofen on my nightstand because I have found if I wake up with a headache and I take ibuprofen and sleep uninterrupted until it passes I am fine. But if I had to wake up and walk around to get meds I would definitely start vomiting and be in for a full episode.

Part of the problem seeking help is that so many doctors will dismiss it, think I’m exaggerating, etc. or blame it on the 50 pounds overweight I am. 

Honestly, now that I have a name for it I feel better about pursuing it. It is a hard thing to even explain to a doctor. “Once in a while I get really sick and exhausted but I sleep a lot and then I’m better.” I do feel better seeing it is actually a real thing.

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3 minutes ago, Indigo Blue said:

Teachermom, I've just read your other replies. Some of what you are posting does sound like cyclic vomiting syndrome. If you decide to try COQ10, it MUST be a quality brand and not just something you pick up at Walmart. We use Jarrow. This one:https://www.amazon.com/Jarrow-Formulas-Promotes-Cellular-Production/dp/B0013OX8KQ?th=1

It's crucial and Dr. Boles has published much about the importance of using only certain very high-quality quality brands. 

 

Thank you. I’m going to read all the info you linked.

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You're welcome. Keep a journal and print out lots of info about CVS and treatment. Take it with you. You'll need to educate your doctor in order to have him/her help you. We've had to do this. This may or may not be CVS, and it's important to see that it's happening in a cyclical nature. For example..... every month, lasting roughly five hours each time. And starting at the same time each time.

For sure, if it's not CVS, you do want to find out what it is!!

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53 minutes ago, mims said:

Our son had this. About every week on schedule from the time he was three. Took several years to diagnose. Giving him ibuprofen as soon as the headache helped. Using ametryptolene (sp?) eventually helped break the cycle and he grew out of the worst of it at puberty. He still has some migraines but more typical. They told is that females tend to be more hormonal related.

Amitryptoline? 

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Wanted to mention one more thing.....ds does have a hiatel hernia, too. But it isn't the cause of the vomiting. They found it while scoping him and looking for the cause of the vomiting. It would probably be necessary to do some testing like this in order to rule other things out.......

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Amitryptoline is used.....

The article about treatment compares the effectiveness of supplements to amitryptoline. The supplements helped ds and the prescription wasn't needed, thankfully.

My niece on my mom's side also had cyclical vomiting but was never diagnosed. She is close in age to ds. Hers was always near her time of month. Yes, this is a common trigger for girls with CVS. Not surprisingly, there are lots of "mito things" on my mom's side of the family.

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my son was diagnosed with it when he was 12? - we ended up with a pediatric neurologist.  he was on propranolol - which is a beta blocker. it did help as long as he was on it.   if he wasn't - symptoms would return. symptoms required IV for hydration as well as narcotics for pain.  we also did testing at the children's hospital - which didn't turn up anything.

turned out he actually had a pinched nerve in his spine.  pressure would build up - and it would "burst".  about every three months, and episodes would last for a week. (increasing in length, and then a few days to recover.)  one adjustment by the chirorpactor.. . that was it.  we did have to take him in once a month, and then just at the very first sign of anything while he was a growing teen.  no more med, and no more symptoms or ER runs.

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16 minutes ago, Indigo Blue said:

You're welcome. Keep a journal and print out lots of info about CVS and treatment. Take it with you. You'll need to educate your doctor in order to have him/her help you. We've had to do this. This may or may not be CVS, and it's important to see that it's happening in a cyclical nature. For example..... every month, lasting roughly five hours each time. And starting at the same time each time.

For sure, if it's not CVS, you do want to find out what it is!!

this.

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We have a cousin with it. They were missionaries in Peru and had to come back to the US before a diagnosis was made. 

She sees a therapist to talk about how traumatic it is. 

I wish you all the best as you search for a treatment. 

Edited by lmrich
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