i have a rare illness called CVS

keriene · 03-03-2008, 23:23

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.
The reason for this is because with people that have IV fluids alot it causes the canuler to tissue and another one has to be put in, the only bad thing is that where the canulers Tissue one after the other (my canulers usually last 1 day maybe 2 if im lucky) it leaves the Veines hard and Clotted which means they cant find anywhere to put another canuler.
I have had canulers put in my arm,elbow,fingers,palm,foot and leg and now the only places left is my knees,neck,head or chest!
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

Caff · 03-03-2008, 23:31

I have no knowledge or expertise on this - but I wondered if you have support from somewhere online like this:

http://health.groups.yahoo.com/group...ting_Syndrome/

or read this?
http://www.pediatricweb.com/seattle/...?ArticleID=797

Your doctor should be able to point you to somewhere more helpful? Have you asked?

I'm sorry that you don't always get support from family or friends.

peanut · 03-03-2008, 23:38

You can't really answer the question 'how would you deal with it' unless you have it yourself. I always get I don't know how you cope or deal with the problems I have but that's a normal reaction, but in real terms you just do I suppose. Long term sickness becomes part of your everyday life whether you like it or not and in the end you have to adapt to it and accept it.

The one thing I wouldn't do though is to ask anyone 'how would you cope with what I have' because it is a pointless question. Everyone deals with things differently on their own terms and in their own ways.

Although I am sorry to hear about your illness, keep your chin up (no pun intended).

joglynne · 04-03-2008, 00:07

I have just checked a Healthforum whose members have been a great support to me. Have a look at this thread and maybe consider contacting your fellow sufferers of CVS.

http://www.healthboards.com/boards/s...iting+syndrome

webcrawler2050 · 04-03-2008, 00:44

Well. I feel for you. That can't be nice at all - your stomach and guts must really hurt

Is there anything the Doctors can do?

I found this: http://digestive.niddk.nih.gov/ddise.../cvs/index.htm

tweetypie/8 · 04-03-2008, 01:57

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.
The reason for this is because with people that have IV fluids alot it causes the canuler to tissue and another one has to be put in, the only bad thing is that where the canulers Tissue one after the other (my canulers usually last 1 day maybe 2 if im lucky) it leaves the Veines hard and Clotted which means they cant find anywhere to put another canuler.
I have had canulers put in my arm,elbow,fingers,palm,foot and leg and now the only places left is my knees,neck,head or chest!
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

i am really sorry to read about your problems ker,but take heed of the good honest advice pea is giving you and above all dont give up.

Ramrod · 04-03-2008, 09:22

Looks like a thread for Salu...

popper · 04-03-2008, 12:14

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.
...

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

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...

keriene · 04-03-2008, 23:17

Thanks Popper, that really did help alot!
ok...
i am 15,
when you said it seem like the body is trying to get rid of a toxin, I know for many other people that would be the explanation for the Vomiting, but for CVS sufferers that is not the case. We all change Diets, Products, Daily routines etc to see if it makes a difference and most of the time it doesnt.
Most people i know that have it was either born with it or got it in early childhood.
If it was as simple as Toxins it would have been solved by now, That has already been checked by doctors.
Triggers on the other hand is a bit trickeyer. Some people have no known triggers and some have a small amount of triggers, as for me nearly everything triggers a 'attack' like - getting to excited/sad, arguements, Tiredness, sick people (people with stomach viruses, colds, flu's, coughs etc.), Products (facemasks, soapes, shampoos), Foods (Oil, sauces), Illnesses and manymore i havent quite worked out.

peanutkp
i know what you are trying to say about you not being able to answer the questions like 'how would you deal with it' and so on, because everybody will deal with it differently but thats the whole reason i am asking! I know everybody will have a different point of view with having a illness like mine but i want to know how YOU will deal with it! so i can get as many different points of views as possible and that will also allow me to see things in a different way apart from MY way.
I hope you can understand where i am going with this!

and thanks all for the help so far

PS. there is more about this illness at - http://www.childrenfirst.nhs.uk/teen...ons/c/cvs.html

---------- Post added at 22:17 ---------- Previous post was at 22:00 ----------

webcrawler2050
There isnt much Doctors can do as they dont know what causes, all they do know is that it is related to stomach epilepsy,stomach migranes and migraines
all they can do is try out medication on us, some of them have no effect at all, some of them work well, some of them have bad effects like weight gain, paranoia and anxiety but most of them stop working after a wile.

and also to be honest with you we dont have painfull stomaches or guts, we only usually have pain in the stomaches when we have a attack (it is like a ripping,pulling pain) but when we are not having attacks we are healthy and like normal people.

sometimes we have no idea we are going to have a attack and sometimes we get pain as a warning or saliva fills up in our mouth (which is not very nice)

peanut · 05-03-2008, 01:03

Your best bet is still support groups and speak to those in the same kind of circumstances. I know first hand that doctors don't help too much with support or advice on how to cope with illnesses in general. Getting info from people who has the same condition is really the first port of call, it's those that you can learn from and gain some valuable information in more ways than any of us can because all we can do is speculate and imagine, which wouldn't be the right way to go about it.

Try doing it yourself, what would you think it would be like to have another illness, say cancer, brain tumour, or something as trivial (yet not nice) as Crohn's disease etc, you can't really can you, all you can say is 'that's bad'.

Unless you'd like to hear from everyone 'Oh I wouldn't be able to cope' or 'that must be terrible' which some do (not saying you are though) to gain the sympathy vote etc and take the attention route.

---------- Post added at 00:03 ---------- Previous post was yesterday at 22:37 ----------

On another note but only taking my own experiences into account, your illness or any illness doesn't really come into it.

Coping is a personal thing as I said before, years ago I coped a lot different to how I cope now, time does take its toll when you're sick for a long time. But on the otherhand it's a gradual process, but by then you're seasoned and battle hardened I suppose. Most of the time it's not the actual illness that you get annoyed with its the change of lifestyle, the things you can't do or take for granted like everyone else.

To start with you can experience anger, the why me thing etc, but that does go the more you learn to accept things, then you adapt and things become normal, not normal normal but your own standards of normal, you take the good days with the bad days and you make the most of the good days as and when you can.

Friends and family also adapt, they also go through it with you and they should accept it as much as you do, you need that to make allowances to a point where you never have to worry nor make excuses for your illness. And never take those around you for granted.

Then there's long term, time changes everything in a way. Psychologically wise it is draining so you have to look down other avenues for help, but help never comes to you, you have to decide for yourself what the needs are and take things the best way you can via your GP and other specialists.

The bottom line is your mental health, keep positive, try to live as normal as you can within your own means and never turn help away if it's offered. Accept the bad days as best as you can and look forward to the good ones.

keriene · 05-03-2008, 02:00

ok, well i did have a friend with cancer that sadley dided a wile ago. when she asked me the same question i asked on here i told her what i thought i would do if it was me. We use to comfort eachother in our own troubles and such and she was a great help. She was the one who suggested i come to Forums and stuff for advice when she is no longer around.

I thought i could ask people them questions because i was able to answer my friends questions and she was able to ansewr mine. Maybe it was because i was kinda going through what she was going through that i was able to help her. I see what you mean when you say you cant sort of tell me what you would do if it was you because it isnt you, which i understand completely but i thought i would give it a go anyway.

Maybe i am better off going to support groups because yeah they know how im feling and how to cope with it and also they know i am not looking for sympathy, which is the same for most people with chronic and Longterm illnesses.

Well anyway i would like to thank all the people that HAVE given me advice and so on and i think this should be the last Reply on this post as i am not getting the advice i was hopeing to get!

peanut · 05-03-2008, 02:16

Well there's a lot of good advice here already, ok it's not what you wanted but at least it's real, honest, truthful and helpful, and personally I think it's a lot better than any advice that I think you're looking for if you're after guesswork.

Good luck hope you find what you're looking for I really do.

keriene · 05-03-2008, 15:26

No, not really.
what i really wanted is to know how others would deal with it!
i know you are saying you cant because it isnt you but some people may hay other views.
I have got some good advice already but only 1 of them is acctually worth taking into consideration. others is giving me sympathy (which i really DONT want)

peanut · 05-03-2008, 15:51

Mod edit (Gavin): Rep discussion removed

Sorry about that.

Walking away from this thread and you can't help some people.

Can a mod remove all my posts from this thread, thank you.

keriene · 06-03-2008, 13:06

Huh, what?