Cyclic Vomiting Syndrome Message Board

Prozac

Tue, 18 Jun 2013 06:32:48 GMT

Has anyone used Prozac to prevent CVS episodes triggered by anxiety? My daughter has been on Prozac since January to help her with the stress of school, but she has been sick every day or every other day since January and I just read a book that says the Prozac is a trigger for Migraines. I am now wondering if Prozac could be triggering her illness. I am hoping someone has some experience or information on Prozac as a trigger. Thanks.

Forum: CVSA - Main Forum

Any tips on lessening/preventing an attack?

Mon, 17 Jun 2013 18:32:14 GMT

Hello again to all that are reading this!

I have taken your suggestions and we are in the "appointment process" with Dr. Li - the packet of forms just arrived in the mail, they have our referral from our reg Doc so the long process has begun. I am encouraged to finally get some direction in the care of my daughter.

Here is my current question/concern: While we wait for the introductory process and wait for a first time appointment, it will obviously not be before my daughter heads to sleep-away camp for the first time. This is a big event, something that she has been talking about since January.

Luckily, the camp is about 20 minutes away from where we live so if there are any issues, I can scoot over there. My concern is this - some of her vomiting attacks seem to come when she has a big event come up. Looking back in my log of her attacks, they were over Christmas, the first days of Kindergarten, two days before a big family trip and on the last days of school.

Since this is all very new to me and I won't have the opportunity to make it into Dr. Li's office before camp (camp is in 3 weeks) do any of you have any thoughts on triggers/things to look out for/foods to avoid or consume? It would break my heart if another attack comes on and she is not able to go to this camp.

Thank you for any thoughts!

Forum: CVSA - Main Forum

concious coma

Mon, 17 Jun 2013 15:49:07 GMT

I was just wondering how many of us-especially adults
-have th inability to think or talk during an episode ?this seems to make some of the med. pros. mad.
.also as soon as i get one nurse to turn the lights off,a nurse wil turn it on for vitals and leave it on -i am very light sensitive during an attack. anyone else? thanks for your input and support.
Carole

Forum: CVSA - Main Forum

Mini Episodes

Sat, 15 Jun 2013 16:31:48 GMT

After a long stretch without episodes it seems I have been having several "mini episodes" over the past several weeks. Does anyone else experience similar events?

I refer to them as "mini" because it is usually a round of nausea with vomiting, or just nausea & both are stopped with taking Zofran & does not require a visit to the ER or Dr's.

Forum: CVSA - Adult CVS Patient Forum

Phone Support Group Tonight

Fri, 14 Jun 2013 17:24:03 GMT

Good morning/Afternoon everyone!

Just a reminder that I will be hosting a telephone support group tonight at 6:00pm Pacific. Everyone is welcome to call in & join the discussion. It will be an open topic group tonight, so we can discuss anything you would like to cover tonight.

I look forward to speaking with all of you! Have a great day!

Marie Pierce

Forum: CVSA - Main Forum

ER Doc

Mon, 10 Jun 2013 16:16:56 GMT

I was in the ER this weekend with my husband who took a nice klunk to the head at work. While chatting with the very nice doctor I asked him, out of curiousity, it he had ever heard of CVS? He said that he had indeed heard of it and asked me if I smoked marijuana. I told him I do NOW but that I didn't start until after I was vomiting uncontrollably for almost a year as it is the only thing to stimulate my appetite and keep me above 100 pounds. He said "it causes it". I asked him how that made sense considering I hadn't smoked it before I began being sick? He has no answer for me. So just like my illness was diagnosed, I will pick what facilities I go to for treatment by the same process. Although they were wonderful for my husband, I won't be seeing them with a CVS episode.

Forum: CVSA - Main Forum

Family Members

Mon, 10 Jun 2013 16:13:52 GMT

Does anyone else have a family member that suffers the same...or you think may be suffering the same? My 17 year old son vomits more than any kid I've ever known. It seems to happen when he is going through a particularly stressful situation. His sophomore year of high school was a very anxious and stressful time for him and he used to get out of bed almost daily and begin vomiting. He now takes medication to help his anxiety and has only a rare episode, but based on my diagnosis, is it possible he is suffering the same thing?

Forum: CVSA - Main Forum

nortiptyline has done wonders

Sat, 08 Jun 2013 13:57:37 GMT

so about a month and a half ago I was given nortriptyline to help with migraines and my CVS and it has done wonders. to give you a little history I usually have about 5-10 episodes a month a often wake up very nauseous and vomiting, and most events required me to go to the hospital for help, but after being prescribed nortriptyline I have had a dramatic change in the number of events I have and the severity of them. I am happy to say that I have only had a couple episodes sence then and have not been to the hospital in a month and a half. I may just get my life back thanks to this drug. I am getting married in 2 weeks and I was seriously worried I would have an episode on that day but now with nortriptyline I have a new lease on life. I do want to clarify, I have had a couple episodes in that time but they have been less intense and easer to manage with lorazapam and propanolol.

so happy to have a life again

phill

just noticed I spelled nortriptyline wrong in the title, oops sorry.

Forum: CVSA - Adult CVS Patient Forum

A petition to the UK dept of work and pensions for CVS to be considered as a disability in the UK

Tue, 04 Jun 2013 20:44:17 GMT

The president of the UK CVSA alerted me to this petition, though we don't know who started it. I'm not sure if you can sign if you aren't from the UK - Ill find out for you, but I know many Brits, such as myself, use this site regularly.

I'm not 100% sure about some of the wording/ facts presented in the petition, but I'm all for promotion of this condition and the general principle of the petition, so intend to write to the dept of work and pensions and newspapers myself to promote the issue and make the most of the opportunities this petition gives.

Please share the petition on facebook and with friends and family and consider also writing to the appropriate MPs/ newspapers to share your personal stories.

Thank you

Nicky

Forum: CVSA - Main Forum

duration of episodes

Sun, 02 Jun 2013 00:11:23 GMT

My daughter has been in the hospital with nausea and vomiting for 9 days with no relief. The doctors have tried everything to stop the nausea but nothing has worked, They have run many tests and found nothing unusual and are thinking it might be CVS. Is this an abnormally long time for this to be going on? They are thinking of putting in a central line to get some nutrients into her because she has gotten so thin.

Forum: CVSA - Adult CVS Patient Forum

Birth Control + CVS ??

Sat, 01 Jun 2013 23:49:07 GMT

Please does anyone know if there's any correlation between use of birth control (specifically Loryna) and onset of CVS??

Our Gastro has newly diagnosed our 22 year old daughter with CVS after several months of diagnostic tests, scopes, endoscopies, etc. Her nausea & vomiting episodes started exactly one month after starting on Loryna. She had 4 prior episodes lasting between 2-5 days but this last episode lasted over 17 days. Nothing seemed to work on her, anti-nausea, Ativan, Phenergan, nothing. She would get a 6-12 hour break and it would start all over again. Relentless nausea and vomiting.

We're following up with her GYN of course and he did advise that he had seen other cases of birth control and onset of migraine and CVS.

Any information is greatly appreciated! Thank you! Maya

Forum: CVSA - Adult CVS Patient Forum

Wish I knew

Sat, 01 Jun 2013 22:40:27 GMT

I woke up...thank god. My five year old daughter was blue, stiff and seizing and continued to do so until the emt pushed d10 into her veins. Her blood sugar was 30. We spent a few days in the hospital. She did have a ten hour cyclic vomiting episode to a abdominal migraine the day before. After more testing the dr told us she had a rare complication from her inderal. So the medicine that was going to help left her critical. But what if it was not the medicine how am I going to sleep? A week later we end up in the hospital again this time none stop dry heaving to a head migraine. She was so dizzy she could to walk. More testing and the dr leave us with she follows cyclic vomiting but is a complicated case. We can not live off the medicine yet we almost did not live on it. When does the testing stop? It is getting worse the older she gets...

Forum: CVSA - Main Forum

Concerned about advice to use caffeine from a past sufferer

Sat, 01 Jun 2013 04:16:11 GMT

Hi everyone,

I am fortunate that my attacks have been under control for the last two years so I wanted to share some of the information that has made that happen in case it can help anyone else.

My attacks started as a teenager but became more severe as an adult. I didn't have big attacks very often for years, but when I had them they were huge. I'd vomit endlessly, so violently that I'd repeatedly lose consciousness and end up in the hospital for days. The nausea was horrible. When I got into my mid 30s the attacks started coming more and more frequently. By the time I was finally diagnosed in my late 30s and started being treated for them the attacks were happening 3 to 4 times a week. Not all the attacks were as bad as the worst ones, but I never knew when one started if it was going to be mild or hellish. It was to the point I barely left my house and caring for my baby daughter was becoming extremely difficult.

The gastroenterologist I'd been seeing at Johns Hopkins had put me on zofran 2 -3 times a day, but that wasn't preventing the attacks. So he then referred me to Dr. David Buchholz, a neurologist at Johns Hopkins who specializes in migraines, including abdominal migraines or CVS. The information Dr. Buchholz gave me changed my life. He has a thorough list of triggers (certain foods, hormonal fluctuation, barometric pressure changes, stress, humidity, not enough sleep & many medications that cause rebounds to name several) and outlines the way the triggers add up. Meaning that something you eat one time might not cause a problem, but if eaten along with other food triggers, or eaten at a time of barometric pressure change or in conjunction with another trigger then they stack up and push you over your threshold and into an attack. If your triggers add up just a little over your threshold then it is a mild attack, but if they add up way over your threshold you end up with a major attack.

Plus foods can take 2 to 3 days from the time they are eaten to cause a problem. Plus there are many different names MSG can go by on food labels. Cardiovascular exercise can prevent attacks (though it can trigger them initially as you try to break through the ceiling and get into shape, something that is tough to work through but that I found to be well worth it).

When I had all this information outlined in front of me, everything just fell into place. Suddenly the attacks that for years and years seemed to have no rhyme or reason made perfect sense and I now have a path to avoiding them. I've only had a handful of attacks in the last 2 years and I was able to keep them controlled and never had to be hospitalized. And those attacks I can easily trace the causes of - usually ends up being restaurant food with MSG combined with hormone fluctuation or barometric pressure changes. I haven't lost consciousness once since starting to follow Dr. Buchholz's plan.

So obviously I believe it can make a huge difference in a CVS sufferer's life and I wanted to share the info. Especially after seeing in the last newsletter that doctors are recommending caffeine for kids with CVS. Dr. Buchholz lists caffeine as the number 1 food trigger and my experience proves that to be true. Or perhaps MSG is number one for me, but caffeine is certainly a MAJOR trigger for me. I know caffeine makes me feel better initially, but then there is hell to pay later. I know everyone is trying to help their children, I wanted to at least have it heard that there are other highly respected doctors and fellow sufferers who would tell you caffeine is NOT the way to go!

If it is appropriate with this board's guidelines I would be happy to share Dr. Buchholz's full lists of triggers etc. if anyone would like them. He also has written a book on it all so you can get all the info from that if you prefer. Please let me know if you'd like the info!
Best,
Bonnie

Forum: CVSA - Main Forum

Hi! I'm brand new & do I really need a Doc?

Sat, 01 Jun 2013 01:02:45 GMT

I hope I'm not offending anyone with my subject line - but it's just something I have to ask.
The term CVSA has just entered into my life today...and I'm both relieved, annoyed, hopeful yet disappointed for my 7 yr old. She just finished yet another episode last weekend and I finally had enough and began doing more research... (we've been dealing with this for over 2 yrs now)

Here's my question and I'm not asking to offend or aggrivate, simply because I've learned while being an advocate for my daughter to ask "is this necessary" when new medical stuff comes up. We already have quite a history of docs, appts, tests, soaring medical bills, fights with insurance, travel time and hospital stays when dealing with her hearing impairment/ear issues/head issues so when I did some initial reading about CVSA I kept seeing how there isn't a cure? So, would traveling to see the specialist (Dr. Li is a few hrs from where I live) make a difference in the health of my daughter?

I don't mean to be simplistic - I just went through a lengthy, costly process of genetic testing for her and after all the effort, time and $$ I basically found out what I already knew (it's genetic, we don't know if it will get better/worse, we'll keep following her) - so I guess what I'm asking is if I were to see a specialist of CVSA, would I at some point get constructive tips on what I can do to help her/lesson the severity, time of her attacks, ways to keep the attacks at bay?

Thank you to all who are reading this - as parents of kids who suffer from cronic/life long medical issues we become experts ourselves...

Kelly

Forum: CVSA - Main Forum

Saturday Support Calls Each Week 11 AM Pacific Time with Dana!

Fri, 31 May 2013 23:07:18 GMT

Dana will be holding a meeting at 11:00 AM (Pacific Time). That would be 11 PM Mountain time, 1 PM Central time and 2 PM Eastern time.

Dana is a sufferer herself and has lots of wisdom and support to offer you.
The meetings usually last about an hour.

You will dial the call in number which is 1-800-977-8002 at promptly at the time scheduled. When prompted you will enter the participant code number which is 5429554#

You will be asked to state your name and then you will be joined into the call. Dana will greet you and when all callers are on the meeting will start.

If you have any questions you can email me, Ruth, at the CVSA Office at cvsa@cvsaonline.org. Or call me at 414- 342-7880.

I hope you will take advantage of the call.

Forum: CVSA - Main Forum