Anyone Else With Abdominal Migraine/cyclic Vomiting Syndrome?

[Sinenox]

I haven't posted here in years, but I thought others might have the same problem so I wanted to throw this out there. This isn't a better diagnosis by any means, but it might make sense for some with atypical experiences like mine. 

 

I have been sick since I was a teen, went from being a competitive athlete to unable to run for a few minutes without feeling very ill, eventually couldn't run without throwing up. Started suddenly and just kept getting worse, same time I began to get intense headaches (the kind that make you unable to stand or breathe for a moment). I also kept having these "attacks" that all of my specialists over the years claimed was too severe for Celiac (runs in the family but genes inconclusive, elimination diet stuck though and I'm fully gluten-free always, allergists claim I have a wheat allergy but bloodwork and skin tests don't show it).

 

Progression of a normal "attack":

 

1. Feel something very wrong, often in the middle of the night ~4-5 hours after eating gluten (supports allergy according to immunologists) though I couldn't always find the source. Sometimes feels like there's a snake in my gut, otherwise general sense of impending doom. 

 

2. Try to run to bathroom, sometimes pass out for a few seconds around here, brain and body seem to be moving at different speeds. 

 

3. Intense and rapid hot/cold flashes, relentless abdominal pain begins to set in and worsens from here on.

 

4. Vomiting and diarrhea, often at the same time. Excruciating 10/10 worst experience ever abdominal pain that just will not end. Curl up on bathroom floor, intense thirst, sometimes hot/cold flashes subside. 

 

5. Eventually I pass out and when I wake up I feel better, though I may still get a bit sick for a while. 

 

I have had every test in the book and many specialists in 5 states. No one can figure out exactly what is going on. The only hard data point (most tests are "off" but not in any suggestive way) is that after a minute of exercise my venous lactate is the highest that exercise physiologists, or anyone else, has ever seen in a not-about-to-die-from-trauma person. This has been noted in the literature for CVS, as well as wheat or gluten as a trigger. All of my literature searches brought up Cyclic Vomiting Syndrome, but since the definition never included the abdominal pain (the chief complaint in my opinion) or wheat I didn't much consider it, although it fits. I finally got around to a bunch of neurology testing and sure enough one of the mainline treatments eliminates the headaches and attacks (so far) entirely. I don't react to gluten now except to get intense brain fog, which is not worth it, so I'm still dedicated to a fully gluten-free diet. 

 

If you've always had a similarly weird constellation of symptoms, it may be worth checking in to CVS. It's rare, and it takes some strange forms in adults. There are no concrete tests, but the first remission of my symptoms in 15 years is enough for me. Being direly ill for a very long time and having no one believe you is terrible, but I just wanted to add that there is hope, if you just keep seeing new people with new ideas.

 

 

[Embers]

I haven't posted here in years, but I thought others might have the same problem so I wanted to throw this out there. This isn't a better diagnosis by any means, but it might make sense for some with atypical experiences like mine. 

 

I have been sick since I was a teen, went from being a competitive athlete to unable to run for a few minutes without feeling very ill, eventually couldn't run without throwing up. Started suddenly and just kept getting worse, same time I began to get intense headaches (the kind that make you unable to stand or breathe for a moment). I also kept having these "attacks" that all of my specialists over the years claimed was too severe for Celiac (runs in the family but genes inconclusive, elimination diet stuck though and I'm fully gluten-free always, allergists claim I have a wheat allergy but bloodwork and skin tests don't show it).

 

Progression of a normal "attack":

 

1. Feel something very wrong, often in the middle of the night ~4-5 hours after eating gluten (supports allergy according to immunologists) though I couldn't always find the source. Sometimes feels like there's a snake in my gut, otherwise general sense of impending doom. 

 

2. Try to run to bathroom, sometimes pass out for a few seconds around here, brain and body seem to be moving at different speeds. 

 

3. Intense and rapid hot/cold flashes, relentless abdominal pain begins to set in and worsens from here on.

 

4. Vomiting and diarrhea, often at the same time. Excruciating 10/10 worst experience ever abdominal pain that just will not end. Curl up on bathroom floor, intense thirst, sometimes hot/cold flashes subside. 

 

5. Eventually I pass out and when I wake up I feel better, though I may still get a bit sick for a while. 

 

I have had every test in the book and many specialists in 5 states. No one can figure out exactly what is going on. The only hard data point (most tests are "off" but not in any suggestive way) is that after a minute of exercise my venous lactate is the highest that exercise physiologists, or anyone else, has ever seen in a not-about-to-die-from-trauma person. This has been noted in the literature for CVS, as well as wheat or gluten as a trigger. All of my literature searches brought up Cyclic Vomiting Syndrome, but since the definition never included the abdominal pain (the chief complaint in my opinion) or wheat I didn't much consider it, although it fits. I finally got around to a bunch of neurology testing and sure enough one of the mainline treatments eliminates the headaches and attacks (so far) entirely. I don't react to gluten now except to get intense brain fog, which is not worth it, so I'm still dedicated to a fully gluten-free diet. 

 

If you've always had a similarly weird constellation of symptoms, it may be worth checking in to CVS. It's rare, and it takes some strange forms in adults. There are no concrete tests, but the first remission of my symptoms in 15 years is enough for me. Being direly ill for a very long time and having no one believe you is terrible, but I just wanted to add that there is hope, if you just keep seeing new people with new ideas.

Just joined and your post came up after I started a new post.  I have Cyclic Vomiting Syndrome - spent a quarter of the year 2012 in and out of the hospital with week + continuous episodes, and out of desperation (at 98 pounds) found my diagnosis myself.  CVS has since been confirmed by a specialist in the field.  

I feel for you and your history with Dr.'s - I have a very real PTSD experience due to the medical field, as they put me in the psych ward during my first 2012 attack.  Apparently it was all in my head...anyway, they took me seriously when I had a 'clinical' death from lack of treatment.

I found a few connections to episode triggers, and have also made the connection of childhood stomach pain with the adult version of CVS.  I do have a severe allergic reaction to sulfur - it took three emergency room visits for me to realize that the sulfur treated dried apricot treats at night initiated my CVS episodes.

I have been diagnosed with chronic Lyme this year, and I live in a state that supposedly does not have the Lyme bacteria.  I have since found out that there is a tremendous amount of 'party-line' politics regarding the accuracy of contracting and treating this nasty bacteria (Lyme is basically impossible to completely eradicate).

My CVS may be a side-effect of Lyme (not suggesting yours is), and I am now reactive to gluten due (I think) to being on severely restrictive diets (trying to make my immune system a lean-mean-fighting-machine).  I did have the genetic test for gluten sensitivity and passed for gluten tolerance.  My recent reaction to 'cheating' with gluten is severe, and I'm wondering if our farming methods (GMO's, etc.) have made gluten hands-off for all.

Reglan (makes the stomach due its job) has been a life saver for me in avoiding imminent attacks.  Good luck to you, and don't let the medical profession ignore what you know - an old saying no longer practiced by Doctors is 'if you want a diagnosis, listen to your patient'.

[mommida]

Health insurance issues stopped me from getting my daughter tested for stomach migraines.  She was diagnosed with Celiac at about 16 months old, Eosinophilic Esophagitis at the age of 6, and seems to be doing much better now.  She would go into vomiting cycles with sever gut pain and need to be put on I.V.'s for dehydration.  (it was once a year at least and we would just call it her yearly vacation)  She hasn't had to be hospitalized for the last 2 years as the urgent care near us treats her with a shot of an anti nausea drug to stop the vomiting before she gets severely dehydrated.

[Embers]

Health insurance issues stopped me from getting my daughter tested for stomach migraines.  She was diagnosed with Celiac at about 16 months old, Eosinophilic Esophagitis at the age of 6, and seems to be doing much better now.  She would go into vomiting cycles with sever gut pain and need to be put on I.V.'s for dehydration.  (it was once a year at least and we would just call it her yearly vacation)  She hasn't had to be hospitalized for the last 2 years as the urgent care near us treats her with a shot of an anti nausea drug to stop the vomiting before she gets severely dehydrated.

  I can't imagine the horror of having a child with CVS, after experiencing it myself.  Please find a 'specialist' in the field, as this is the only way to get respect in the emergency room.  The syndrome is 'functional' not 'structural' - so the doc's may not think the pain and nausea match the physical state (and disaster with the medical field unfolds).

  Hydration and anti-nausea IV IS most important when an episode begins (digestion is impossible).  There are stages to this syndrome, and you don't want your child to get beyond the first stage - if she does have CVS.  My diagnosis came without any form of testing.  Past episodes and clinical symptoms should be enough for a diagnosis with a specialist.  

  A great national support group exists, and you may be able to find the rare doctor who can help you through this site: Open Original Shared Link

  As an aside, I did a little Lyme research on Celiac - and found that this can also be one of the autoimmune disorders that Lyme will mimic (as a very real disease), as well as Cyclic Vomiting Syndrome.  Sorry, I won't get on my preaching stump about Lyme anymore (!).

  My heart goes out to you, and I hope you find an answer to your daughter's condition soon - no matter what the diagnosis ends up being.  I would give you my private email, but being new to this site, I don't know how to do this.

  Again best of luck, and may all the 'A-group' doctors be sent your way.