Cyclic Vomiting Syndrome Message Board
Sign up Calendar Latest Topics
 
 
 


Reply
  Author   Comment   Page 1 of 4      1   2   3   4   Next
epeyer

Registered:
Posts: 7
Reply with quote  #1 
Hello Everyone,

I'm happy to have found this group. I had a doctor diagnose me with CVS in August of 2016. He didn't explain it well and I wrote him off - in my head, it was red meat causing my issues, so I stopped eating red meat and everything seemed fine. 

Fast forward to this month - I haven't eaten red meat since the August of 2016, but now have had 3 episodes over the last 16 days. I've since moved and was able to see my new doctor this past Thursday, and I've also been seeing a therapist for anxiety for the last 2 months. The doctor ordered a blood test for magnesium levels and an h. pyloric test and my therapist suggested keeping a food journal and perhaps trying to cut something out for a few weeks (dairy or gluten for example) and gradually bringing it back in to see if that made a difference.

My episodes typically start out with abdominal pain and burps that taste like vomit. I eventually have to throw up to get the pain to go away. I got a new prescription for Zofran this Thursday, and while it did seem to help when I got sick on Friday this week, it didn't last. I still spent most of last night (Saturday) vomiting. 

I will continue to stay away from red meat and am planning to cut out alcohol. I'm frustrated because I thought I had solved my problem by eliminating red meat, but I feel like I'm back to square one. I'm hopeful those of you who know more about this condition might have some insight for me. Are there any common food triggers or is everyone completely different? Has anyone found relief in eliminating dairy or gluten? Should I be focusing more on dealing with my anxiety than worrying about my food intake? Thanks in advance. -Erin
0
scooky1

Registered:
Posts: 132
Reply with quote  #2 
Hi Erin and welcome to the CVSA message board!
My name is Steve (Scooky1) on the board.

Well it sure sounds like you have this terrible illness " Welcome To The Club" this is the worst club you will ever be in! But you have come to the right place! the ladies who run this board will be able to help you as well as help you to go in the right directions as you go through this journey.
This is a long term thing so don't think you are going to find an answer and get a cure and everything is going to go back to the way they were. If you really do have CVS, well, this is your life now and you will have to except the fact that your life as you knew it or wanted it to be will most likely never be the same.
I am very sorry to tell you this but I and so many others who you will meet here on the board have been dealing with this for so many years, looking for the answer, the cure but so far we haven't.
Check out the posts and see what others are trying, I myself am trying some new stuff (meds) now and I am hopping once again that this might be the right stuff and that will be the end of this nightmare.
Try to keep in a good space and not let depression get you when things drag on because that's the way this illness is.
Good luck young lady and feel free to ask any of us anything anytime, We are all in this together and do our best to help and share information with each other.
                                                                                                Steve
0
ginny

Avatar / Picture

Moderator
Registered:
Posts: 4,750
Reply with quote  #3 
Hi and welcome to the message board.  Steve has been very helpful and has good solid advice and he is (finally) getting much needed relief with his newer medication regiment.  You can search his name on the MB for some more of his posts.

I am wondering what tests you have had?  How often do you vomit--if it is once and you get relief or if you are vomiting several times an hour for hours or days at a time?

It is currently thought that CVS is related to Migraines and also a possible mito disorder (not disease and not progressive).   There are supplements posted on both the message board ("pinned" to the Main forum and also on the CVSA web page) that have been helpful too many.  Meds vary from person to person and from doctor to doctor.  I am not terribly sure that anyone is always responsive to one anti emetic-- different nausea and vomiting meds work on different areas of the brain-- but many do tend to respond better to one or another of the meds.

Sleep is thought to reset the brain so sedation is important.  Please see the Empiric Guidelines on the CVSA web page.  This will help with understanding CVS and the different stages in a cycle.

Let us know how you are doing? 

__________________
ginny CVSA Moderator
0
wynnak

Avatar / Picture

Moderators
Registered:
Posts: 1,092
Reply with quote  #4 
Welcome to Message boards!

I agree with Ginny on inquiring about what tests you've had to rule out other conditions. We can better offer advice and suggestions knowing a bit more history. Plus, I see so many people that get misdiagnosed because the proper testing was never done. 

Can I ask, was it strictly red meat that set you off? The gluten and dairy are just the medical community going.. take the most likely foods to irritate you out of the equations. But, I am going to be a bit of an antagonist for a second.. because usually if meat is an issue, then you find relief with cutting out dairy, there can be another issue. Have they tested your stomach acid? Or pancreatic or liver enzymes? People that can't digest animal proteins have low stomach acid. As you can see.. the the GI System is quite massive and there can be a multitude of reasons that you are experiencing issues. 

I know what you are talking about with vomiting to relieve the pain. My son (the one with CVS) will drink powerade so he has something to throw up. It is easier than dry heaving. And sometimes that vomiting helps relieve the stomach pain. 

Hope to hear a bit more of your journey so we can support you going forward. 


__________________
Blynda
Message Board Moderator
Monthly Support Call Moderator
0
epeyer

Registered:
Posts: 7
Reply with quote  #5 
Hi All,

Thanks so much for your responses. To answer some of the questions... I haven't had much testing done at all. Back in 2016, the diagnosis came after an ultrasound where they checked on my gall bladder. I've never been to the doctor WHILE experiencing an episode. It's all be based on my re-telling of the events. I'm 30 and have dealt with this issue since Middle School (I think). I remember going to see a GI doc back then and really finding no answers. We just figured I had gastritis like my dad and I was prescribed ranitidine which, similar to the zofran, would ease the pain for a bit, but I would always end up having to vomit to get back to 'normal'. When I was younger, my episodes usually happened every 6-12 months. I honestly don't remember if I would vomit multiple times. Back in 2016, I had a bad month where I had 3-4 episodes over the course of a few weeks. That was when I returned to the doctor, got the CVS diagnosis, assumed the doc was just telling me 'we don't know why it happens, so we lump you into this category', and decided to stop eating red meat. I didn't eat a lot of red meat back then, but I had eaten it more often in that month that I got sick so much. However, I can't make a clear connection between the red meat and my episodes, it was definitely a correlation, but not necessarily a causation. 

More recently, in these last 2-3 weeks, each episode seemed to start with stomach pain in the morning, and eventual vomiting (2-4 times) that night/the following early morning. My episode last Tuesday, I actually vomited around 10:15am without any warning/pain ahead of time, which was very odd to me. Following that, I still felt sick and ended up vomiting another 2 times late that evening. This weekend, I felt sick early Saturday, took my zofran and zegrid, felt a bit better, but was tired and my stomach still felt off, so cancelled all my plans and spent the afternoon/evening on the couch, napping and watching tv. I ended up throwing up 4 times that evening, 3 of the 4 mostly stomach acid, over 3 hours. Something I've found odd is I usually have to make/encourage myself to vomit. Rarely does my body say 'you better find a receptacle NOW!'. I know the vomiting will make me feel better, so I cough and/or gag myself to make it happen. 

I've never had my stomach acid tested and can't think of any other tests I've had done. This last Thursday I did the h. pyloric test but haven't gotten results yet. I've been away all weekend, but am looking forward to checking out all the resources on this site. Thanks again for all your help.

-Erin




0
SShari

Avatar / Picture

Registered:
Posts: 3
Reply with quote  #6 
I noticed from your post the actions I had also taken. I did first like you starting with the red meat. What I noticed as well was I had to avoid certain foods with any "weight" to them or overeating and causing any pressure against the wall of my stomach. It seemed easily irritated even with liquid filling it. I was often home alone when.sufferimg the attacks and noticed my body would stop digesting food before these attacks and my abdomen would feel very hard to the touch. I have over the years switched to more liquids or pureed items and less food. I want you to not suffer and I know some of the heavier foods or greasy foods wreak havoc on the stomach prior to the onset of the attck
__________________
I am a 51 year old female with Cyclic Vomiting Syndrome. On top of all the physical problems caused by this disease, I am now dealing with secondary issues, such as not being able to work outside of my home and divorce which will leave me with very costly medical benefits.
0
epeyer

Registered:
Posts: 7
Reply with quote  #7 
Hi Again Everyone,

Medical update:
Test results from my last appointment... Magnesium levels were normal, H. Pylori was Negative. Doctor wants me to start once daily generic Prilosec for 30 days and I have another appointment in a month. 
I've been continuing not to eat red meat and am trying to go gluten free just to see how my stomach handles it. So far, my stomach does seem a bit less irritated, but I'm not convinced that has anything to do with my possible CVS. I know how it feels to have an upset stomach because you ate a bunch of crap, and it doesn't feel the same as when I'm having an episode. 

I'm working on getting my medical records from my previous doctor with the hopes of learning what supplements were suggested by the doc that diagnosed me with CVS back in 2016.

A few of you mentioned getting other tests done to rule out other causes for my issues. Maybe this is a huge question, but besides testing my stomach acid and pancreatic & liver enzymes that Blynda mentioned, what are some other tests you've had done to rule out other causes? I'll also be honest and say I don't know how much money I can spend on getting these tests done :/

I've been feeling well and had no episodes since my last one last weekend. Hoping it stays that way.

Thanks again,
Erin
0
scooky1

Registered:
Posts: 132
Reply with quote  #8 
"I hope it stays that way" Man I have said that too many times and I really hope for your sake it does! But if it is CVS I hate to tell you this but plan on it returning. That is almost exactly what I said when I first came here and I was getting a break from episodes when one of the moderators told me some years back and she was right.
I have been through all of these tests and they put me on an antacid thing and I quit having heart burn that I had forever so that was great but I still had the CVS. 
The new stuff I am trying may be working but still have to wait for an unknown period of time to find out, haven't been to the ER in almost 4 months now, SOOOO????
                                                                     Stay well,Steve
PS. "stay Well" what a stupid thing to say! like you have anything say about what the monster wants to do. LOL

0
ginny

Avatar / Picture

Moderator
Registered:
Posts: 4,750
Reply with quote  #9 
Hi Erin, on tests, please read the Empiric Guidelines found on the CVSA web site as well as the NASPGHAN paper.  The paper has a chart that suggests tests by matching symptoms to the most helpful testing.  This is a pedi paper but I still think it is helpful.

As to affordability of testing, the tests are costly.  Many have a brain MRI to rule out anything going on in the head as a cause of the vomiting.  I am not sure if we have heard from anyone who actually did have a tumor or aneurysm or cyst-- or any other number of things--- as the cause of their vomiting.

There are some blood tests best done during a cycle that can help point toward something other than CVS.

Ultrasound can be helpful-- UPjunction problem, ovarian cysts, gall stones, and more might be found on U/S.  

What I quickly recall is a couple of those diagnosed with CVS having Addisons Disease, waxing and waning Appendicitis, kidney disorders.   I am sure I am missing other conditions.  The idea is to be sure that you have an accurate diagnosis. CVS can only be diagnosed after other conditions are ruled out and for some, the CVS diagnosis can later be found to be incorrect.

I understand the cost of these tests is impossible if you do not have a good health insurance policy.  Maybe your doctor has some ideas about when to test for what.  

 

__________________
ginny CVSA Moderator
0
shayden

Registered:
Posts: 54
Reply with quote  #10 
Hi Erin and welcome to the group. As you continue to read stories from different members, you will quickly see that there is no “one size fits all” version of CVS symptoms, triggers or treatment. While triggers can be food related for some, other triggers can be stress related (both positive and negative stress), due to a bad night sleep, the result of a common cold, tied to monthly cycles, etc.

Because the triggers can vary so drastically, it can be difficult to identify - many of us keep logs to track just about everything from what we eat to how we sleep to what stressors we experience throughout the day....

I, too, am giving up alcohol, but ultimately believe my CVS is triggered by stress and anxiety. So while I am trying to eat and drink as cleanly as possible, I am also significantly focusing on reducing my stress and anxiety levels - I am focusing on me....

I am going to counseling specifically for chronic illness, going to acupuncture, started to practice mindfulness/meditation (there are many great apps for this), taking walks/working out more often, etc. Because my current position has me working 60-70 hour weeks in a high-stress environment, I am even working with my company to find a different and less stressful position (I am extremely blessed that they are working with me) so my baseline stress is lowered.

As the others mentioned, there is a lot of good information on the website, and you can reach out to CVSA for a list of specialists in your area that could help to rule out or diagnose CVS.

I wish you the best of luck - don’t hesitate to ask more questions. You are not alone!

0
epeyer

Registered:
Posts: 7
Reply with quote  #11 
Another disappointing weekend filled with plans, only to be thwarted by abdominal pain and nausea [frown] The good news is I read through the NASPGHAN paper Ginny suggested and now feel like I know what tests are the most important for me to have done. I also got my medical records from the last time I saw a GI (Sept 2016) and the supplements he suggested are the ones listed on the CVSA website. I'm now pretty sure gluten isn't my problem, so I think my next steps are meeting with my doc again, getting some tests done, trying these supplements, and practicing mindfulness. I think I may be noticing a pattern that this is happening when I'm looking forward to fun things, but also feeling a bit anxious. I know my therapist will be able to help with this too. 

Thanks everyone for all of your help so far. It's nice to have a community that really understands what I'm struggling with. 
-Erin
0
ginny

Avatar / Picture

Moderator
Registered:
Posts: 4,750
Reply with quote  #12 
So many do have difficulty with happy excitement.  If you can reign in your excitement you might be able to prevent the cycle.  I know it is hard to not allow yourself the full range of feelings.  If you look back in the archived messages on the MB, some parents did not tell their CVS child about upcoming big events such as Disney World until they were ready to leave.  If you can see yourself in this, maybe you can work on either a medication to help you during these times or some behavior therapy.

I recall my daughter being absolutely fine and boarding a flight to visit with her then boyfriends family.  She started with the vomiting mid flight. She was taken to an ER, not treated for CVS so the vacation was spent vomiting.  Not knowing about CVS, this was confusing to me.  But it was actually when I began to notice that stressful events such a school exams did not bring on a cycle, but happy type of events might. 

For the supplements, there is information on them on the CVSA web page and also pinned to the Main Forum on the MB.  You do want to consider quality, at least to start off.  If you do not use pharmaceutical quality the supplements are not controlled by the FDA and each capsule might contain a different amount of the product.

For some, if an exciting event was upcoming or another pull on energy, they tailor the supplements.  You do want to discuss with your doctor.  Emotions can be energy draining and the supplements might help keep you fueled.  If they do help, you might benefit from a small good quality snack just before bed.  Fasting can be a trigger for some.



__________________
ginny CVSA Moderator
0
epeyer

Registered:
Posts: 7
Reply with quote  #13 
Hi All,

Another episode this week, but I was able to get into the doctors and get some bloodwork done- the first time that's happened during an episode. But, got the results back and everything was normal, including lipase and amylase. We decided to schedule an abdominal ultrasound and an appointment with a GI. I tried the CoQ10, but it actually seemed to upset my stomach - so either I didn't get a good quality product or my body simply doesn't like it - so not taking that at the moment. I'll consult with my doctor about the supplements later this month. My doc had put me on a PPI (prilosec, ** mg) in April, and since starting that and taking zofran and zegerid when I feel an episode coming on, I've avoided the vomiting part. Which is nice, but instead I'm exhausted. I have to sleep for at least an entire day to return to my functioning self. 

I feel like I have a new theory every day as to what my triggers are, but looking back at my episodes over the years, here's my most recent: I get physically sick when I'm feeling good mentally, emotionally etc... I started seeing a therapist at the end of February and I was feeling pretty good mentally in April - which is when I had 4 episodes, the first in 2.5 years. I had a very stressful job for 6 months last year, no sickness. I studied piano in school and experienced pretty bad performance anxiety, but performed countless times and performed two solo recitals- no episodes around these stressful periods. This to me is so frustrating and overwhelming, and I'm hoping my therapist will have some thoughts on it when I see her this week. I'm hoping she'll tell me I'm wrong, but I'm curious if anyone else has noticed a pattern like this?

Thanks again everyone. I know I've said it before, but it really is nice to have a community that understands what I'm going through.
-Erin
0
ginny

Avatar / Picture

Moderator
Registered:
Posts: 4,750
Reply with quote  #14 
I understand what you are referencing.  It might be a fight or flight type of thing.  You do ok when your adrenaline and maybe cortisol is high from stress, and then it drops when things are going along smoothly.

I think this is why so many seem to be triggered by positive events-- weddings, vacations, fun trips-- and then when they need to study for exams or are otherwise stressed, they do not cycle.  I think many do have an episode when they crash after the event(s).

On the CoQ10, my daughter also felt sick at first trial.  This was when some of us on the MB were trying to figure out the  supplements.  I had purchased a synthetic type. Now we know it needs to be natural and should be Kaneka based.  Epic4Health & Healthy Origins will offer a discount on a pharmaceutical quality product.  Dr. Boles likes Trader Joes brand.  You also might want to review to be sure there is no vitamin E.  Many with CVS seem to be sensitive or negatively react to E.  We are told that in the US E is often soy based. From the HealthyOrigins web site:

Our 100% natural (trans-isomer) CoEnzyme Q10 is produced exclusively through a yeast fermentation process, the highest quality available. All Healthy Origins® CoQ10 gels are encapsulated in the USA using only Kaneka Q10™ 

__________________
ginny CVSA Moderator
0
wynnak

Avatar / Picture

Moderators
Registered:
Posts: 1,092
Reply with quote  #15 
There is a link to the brands that have been suggested for CVS patients on the website (cvsaonline.org) under resources and supplements. It was my first thought too when reading your post that it could be what the supplements are suspended in. Dr Boles says that Qunol if "acceptable" as well and easier to find. trader Joes now had two CoQ10 options, and I am not sure what the difference is there. It is fairly new and I have not heard Dr.Boles indicate if he knows of the difference. 
__________________
Blynda
Message Board Moderator
Monthly Support Call Moderator
0
Previous Topic | Next Topic
Print
Reply

Quick Navigation:

Easily create a Forum Website with Website Toolbox.