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ginny

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Reply with quote  #196 
Best to start a new thread.  This is an introduce yourself thread and some people do not read each of these posts and they will be difficult to search for those looking in the archives.
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Hoppyone

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Reply with quote  #197 
Ginny, you mentioned Wilson's Disease and I am wondering if there is a correlation between that and CVS. I recently had a blood test come back with extremely elevated copper levels and Wilson's Disease came back in a Google search. My Dr said it would be extremely rare if I had it given my age, but I had never heard of it until last week and now I read it here. My Dr is having me do a urine catch test and is running some additional tests as well.
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ginny

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Reply with quote  #198 

Wilsons Disease is a genetic disease and the diagnosis is by liver biopsy.  Your doctor must be monitoring your liver enzymes?

As far as we know, CVS is a functional disorder and not a disease.  There is no known correlation to Wilsons.  I do not recall anyone having both conditions but Wilsons is one disease with some symptoms similar to CVS. Your doctor can order an eye exam to check for copper deposits in your eyes-- typical for Wilsons.  How is the high copper being treated?







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Hoppyone

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Reply with quote  #199 
She ran all of the tests again including a heavy metal panel and a urine catch test. My levels came back at the high end of normal so for now she is just watching it.

I just thought it was weird that I had never heard about Wilson's Disease before and then I see it here as well.

This is the main reason I usually don't Dr Google myself. I just freaked out when I saw how high it was and didn't think before my fingers started typing..lol
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ginny

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Reply with quote  #200 
Glad your doctor is watching your levels.  If you are still uneasy, you might see a hepatologist and have more testing done.  Your current doctor might order an ultra sound of your liver and kidneys and keep track of basic functions.  When copper levels are high, and other things such as ammonia, the liver might not be processing correctly.  For us, during the difficult time of elevated liver enzymes and copper levels, all meds had to be removed, a low protein diet was prescribed, so to help the liver to heal.

Biopsy showed damage but no Wilsons.  The liver is an organ that regenerates and all LFTs are now perfectly normal.  



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CJ13

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Reply with quote  #201 
Hello all, my name is Cassi, I was diagnosed with cvs in 2007 by a GI in Anchorage, AK, Dr. Sweeney. I’ve battled with episodes since 2000/2001. It is closely associated with my menstrual cycle and always involves both abdominal and normal migraines. It can be onset by excitement of any kind, good or bad, holidays, vacations, social events. It does seem to take a certain combination of factors to cause my episodes; the anxiety I feel (whether I acknowledge it or not), the food I eat (an abundance of alcohol, sugar, gluten or msg), and the phase I’m at in my menstrual cycle, considering all of these factors I am still not able to completely get a grip on my episodes. They are down to only one per year for the last 5-6 years, lasting 10-16 days usually.
Every episode I have ever had starts in early hours of the morning, between 3-7AM. I awake from my sleep and begin vomiting, it becomes more aggressive and violent and lasts that way up to 6 days. During that time I usually go into the ER for IV fluids sometimes once a day, other times once every couple of days. Around day 6/7 I begin calming down which is when I use some type of sedative (lorazepam or haldol) in an attempt to sleep the rest of my episode off. When I was younger they would simply put me on morphine for an entire week while admitted to the hospital to keep me knocked out, however, when they realized I kept coming back with the same symptoms and the morphine didn’t keep me from violently vomiting once I awoke, they started taking a deeper look into what was going on, which is what led me to the GI specialist in 2007 after four endoscopy procedures, countless cat scans, four to five contrast scans and an MRI.
Then 2011 happened. I had to argue my way through any medical facility telling them I value their concern however I need to be treated for CVS NOT CHS. I quit smoking MJ for one year; I had three episodes that year, for each one I had to be admitted to the hospital for 3-10 days. I read every study conducted, every cited article I could find, every ounce of medical research about CHS, I did not have it and if hot baths were the only correlation they have that was nonsense, because I’ve heard several cases of CVS patients self soothe under running water. It is calming, not just the heat, the contact the water has to the skin is what it is for me. That water can be tap cold and I’ll still sit under it for the contact on my skin.
My experience has been long and rigorous like many. And oh sooo frustrating at times! I’m still searching for things that work, things that can lessen the blow when it hits, if there’s any way to stay completely symptom free!
I wish everybody the best in their journeys and hope you and your loved ones find relief soon.
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wynnak

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Reply with quote  #202 
Hi Cassi!

Welcome! Thank you for sharing your story. It sounds like so many others like you have mentioned.

Hot bathing should not be a diagnostic criteria since CVS patients have been doing this for years. I have contacted many medical professionals over this.

Welcome,

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starstuffwithCVS

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Reply with quote  #203 

Hello,

I'm new here. I hope I'm posting the introduce myself properly via reply> I didn't see how to post it as a new thread within the Topic. 

My name is Kelly and I was born in 1966 when all of this CVS stuff wasn't really recognized. My symptoms started around 8 years. I was diagnosed with ocular and cluster migraines. They made assumptions my vomiting, lethargy and tachycardia was from that.Then at 10-14 it got worse. Triggers became food, light, heat, weather.  Manifestations of IBS.  They thought I had various diseases, including migraine, allergies, anxiety. When I started menstruating I started fainting during episodes. They would last 24 hours to days.  Sometimes clusters of multiple short episodes a week and other times one episode lasting 1-3 days and then weeks in between. I get muscles pain, cramps, and the vomiting starts 3am-10am usually and repeats daily at the same time each day less...until resolved. Headache on one temple and fascia pain in shoulder neck that mimics Fibro. I was diagnosed with Fibromyalgia and HAE at 25 - hereditary angioedema. both probably incorrect. Now at 53 they decided I have CVS.  I have another colo/endo combo> I don't know what they will find. during episodes I have irregular heartbeat, dehydration, urine retention, ocular/vision disturbance, headache, vomiting, light sensitivity etc etc.  I've found that eliminating all citric acid and preservatives has helped. I started L-carnitine and CoQ10 and now on 3 weeks worth and starting to realize I feel better. Between episodes I live a normal life for the most part with a bit of exercise intolerance and of course I have to be super careful about my environmental triggers. 

the worst part is now my daughters who are 20 and 22 - started having similar issues at ages of 12ish and tracking the progress of this. They say its not hereditary but in the female side of my family - my mom, daughters, my aunt...we all have a similar set of issues. My youngest diagnosed with the 'abdominal migraine' by a neurologist and my oldest diagnosed with IBS and gluten sensitivity. I don't know, but is there a possibility this is a new variant of CVS that is only in the female line of the family? They say it's not hereditary but there are genetic tendencies. I'm concerned for my daughters. I want to find answers so i've joined here to educate myself. It's been a long road of being ill while trying to live my best life ever.







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ginny

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Reply with quote  #204 

Welcome to the CVSA MB! It is very difficult to see your children suffer.  Although I cannot say if they do or do not have CVS, the testing is very important to rule out other conditions.  What does often run in families is migraine.

I am happy to read that CoQ10 and LCarnitine are helping. You might want to add in vitamin B (see the saved thread on the latest suggestions for the supplements, also on the CVSA web page).  Some also find that magnesium is a possible additional help.  Please read up on the forms of magnesium, some are better absorbed than others.

It is possible to have several conditions along with CVS.  Episodes along with menstration are common. One of the best papers you can read on CVS can be located on the CVSA web page, The Empiric Guidelines, Dr. David Fleisher.

Please keep us updated.  To start your own thread, choose a forum such as Main or Adult, click on the upper right corner on "New Topic".  You can then write offering advice or asking for advice.  Also the archives should be very helpful.  




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ginny CVSA Moderator
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Debking

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Reply with quote  #205 
My grandson has had CVS for 3 years. It started during May of 2017. It typically occurred once a year .. the same month each year. It lasted about 30 days. This past year it occurred twice, for a month each time. He has very long flare ups.
However , after lots of research we discovered that it was probably CVS. Before that, we were simply not helped by the medical community who assumed that this teenager has CHS. He received very shabby care until we connected with the neuro intestinal health center at Mass General Hospital.
They literally saved his life .
He was dying as he entered the hospital and was admitted for 12 days. We received care for CVS and now, at least, have a clear understanding of his diagnosis.
He is on prophylactic medicine and has only had one short flare up since September . Thankfully we were told how to treat it ( atavan) and it only lasted for 2 days.
We are so grateful for Dr. Kuo and another doctor ( Dr. Staller ?) who just happened to be working in the ER on the day our grandson arrived.
The doctors who treated him at MGH were unbelievably fantastic. I will always be grateful for their incredible concern and care that they have to our family.
We will continue to go back for follow up treatment.
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ginny

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Reply with quote  #206 
What wonderful news about your grandson getting excellent treatment at Mass Gen!  

Please keep us updated on his progress. Glad he only needed the one medication.  You might read up a bit, a good starting point is The Empiric Guidelines, Dr. David Fleisher.  Several excellent papers are on the CVSA web site.  

Thank you again for the encouraging news about an ER treating your grandson so well.

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wynnak

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Reply with quote  #207 
Wonderful to hear this! 

Dr. Kuo had been involved with the top CVS Specialists. He knows his way around CVS. Glad you were able to get access to him.

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