Quote:
Originally Posted by keriene
i was Diagnosed with a rare illness called CVS (cyclical vomiting syndrome).
basically what happenes is you get bouts of vomiting that last anything from 1 hour to 2 weeks.
when i have a attack i usually vomit 50+ times in a hour, it can start at any time in the day/night.
My attacks usually last 1 week and i usually go to hospital 1 day into the attack due to dehydration.
For the past 3 years i have been in Hospital more than 100 times and have had more than 100 canulers in 1 year.
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There is no cure or no known cause for this illness but it is believed to be related to migraines.
CVS affects your everyday life because if you are like me and go to school you cant attend school because you are always ill or in hospital, the same for work.
There are some Products and foods that may trigger a attack,
usually find it hard associating with the outside world because of the illness,loose friends sometimes even family because they are so sure it is self inflicted and you usually have a hard time getting a diagnosis because tests come back Normal and some people just assume it is more mental than physical.
You may be wondering why i am telling you this but the reason is i want to know what you would do if you was Diagnosed with this illness and how you would deal with it!
I was diagnosed 3-4 years ago but have had it since i was 7-8 years old.
Nobody seems to know much about this illness and nobody seems to understand how we feel!
Thanks in advance for the replys i may get
Keriene
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Hi keriene.
its clear your at a point you dont know what to do, hence your request for outside opinions, and thats a good thing.
you also appear to feel noone really understands your POV and cant understand why.
thats easy ,most people dont suffer on a dayly basis and so dont try and place themselves in a sufferers place, its easy to assume when your not suffering.
but there are many people that do suffer dayly and interact on the net (infact for many its their only outlet)and so you can find some releaf on the talking and understanding Part at least.
i dont know anything about your syndrome other than the quick read of the links here and it appears it effects the younger humans rather than the older ones.
how old are you as it seems you may need to do all you can to work out your symptoms timeline, and work out a potential plan, and that can be harder for the younger people but it can be done if you put your mind to it.
the first thing to realise is theres not going to be a quick fix and that you will be far better to try and work out what works for you.
what would the average dayly sufferer do,no matter the illness, as its a syndrome, thats the key point ,in that noone really knows what the cause is, you need to try and find out what sets you off and compare notes with other sufferers.
as the person with the syndrome, your the expert in this, so collect your data.
so , id start taking highly accurate notes, include everything you do and take, including times of the day for at least a month of normal activity etc.
waking times,eating some whatever,feeling such and such, sleeping, everything infact as you do right now, THEN ,its time to change one thing,rinse and repeate.
as i say, the key for longer term comfort if not cure is understanding, and that begins with making your detailed lists as best you can.
reading the links it appears that many people suffer after just waking up, is that the case with you? and do you show any signs during sleep or are/do you seem fine then.
in the very limited text i have read so far it seem strange that there were no mention of the basic fact the average person vomiting is a sign that your body is trying to remove a toxin.
not that i know anything, but i wonder if as the sufferer wakes and starts the onset of the vomiting, the body is trying to remove some toxin thats built up while asleep?
the question then would seem to be ,what builds up inside the body while asleep, and what can be done to stop this buildup/chemical reaction, and ask your other syndrome sufferers what their dayly routine and intake is to compare in your own clinical food trials.
your notebook will be key to your understanding and perhaps finding the routine that works best for you, but its not going to be easy or fast and you will most likely need to give up something you dont want to, as that would be the trigger that sets you off.
use the post as you will, but i beleave understanding the cause and effect is the key, and so i hope the above helps you in some way finding that, feel free to ignore any and all of it OC and continue doing as you have for so long...