i have a rare illness called CVS
 

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

Re: i have a rare illness called CVS
 

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.:hugs:

Re: i have a rare illness called CVS
 

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). :tu:

Re: i have a rare illness called CVS
 

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

Re: i have a rare illness called CVS
 

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

Re: i have a rare illness called CVS
 

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.

Re: i have a rare illness called CVS
 

Looks like a thread for Salu...

Re: i have a rare illness called CVS
 

:welcome:
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...

Re: i have a rare illness called CVS
 

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)

Re: i have a rare illness called CVS
 

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.

Re: i have a rare illness called CVS
 

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!

Re: i have a rare illness called CVS
 

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.

Re: i have a rare illness called CVS
 

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)

Re: i have a rare illness called CVS
 

Mod edit (Gavin): Rep discussion removed

Sorry about that.

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

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

Re: i have a rare illness called CVS
 

Huh, what?

Re: i have a rare illness called CVS
 

Nevermind, Can we please return to the topic now.

---------- Post added at 12:14 ---------- Previous post was at 12:12 ----------

The way I cope with my disability is by focusing on my Son and keeping him happy.

Then I try to adapt (which I think I've done well) to not let what I couldn't do before affect my life.

Someone comes out to speak to me once a fortnight for an hour from the local sight concern charity so that I can sound off / rant to someone not connected to my family.

Most of all though, I try my best to remember that while things may be considered bad, there are always people who are worse off and they are the people who need help really, not me.

Re: i have a rare illness called CVS
 

And on that note to answer your question, if I had your illness instead of mine, I'd be over the moon, I'd be able to live a pretty much normal life as that illness is pretty much mostly in remission.

I would not complain, I'd be happy as Larry. So what do you have to complain about. Think yourself lucky.

If you can put yourself in other people's situations as you say you can (including your friend who had terminal cancer), then you should be now have come to the conclusion that your condition is pretty much trivial in comparison. So you should be counting yourself lucky that you don't have anything worse.

You asked. :rolleyes:

This reply isn't spiteful etc, just honest and I'm being true to my own word.

(Post was intended for keriene and NOT for Jefferson T).

Re: i have a rare illness called CVS
 

peanutKp.
Let me tell you now, if you had my illness you would not be 'as happy as larry'
you would have no real life! probibaly wouldnt even need a home because you will live in hospital among all the nurses that just sit there and take the ****, dont bother taking how you feel into consideration.
and what out of the whole of last year i was in hospital for every holiday! - Easter, good friday, everyones i knows birthday, halloween, christmas,new years eve and new years and to make it worce i have just come out of hospital a couple of hours ago.
i was in a coma from how bad my illness had got extremely bad and just to think there are people out there who are wishing they had the same illness i have!
Im trying to find a escape when there are people like you who are basically wishing they had the same illness!

Re: i have a rare illness called CVS
 

Well you asked a question and I tried to answer it the best I can. If you don't like my answer then it goes to show that I don't or can't obviously understand what your condition is like unless I have it as well.

As stated before, no one would wish an illness on anyone and I wished you didn't have the condition but you have unfortuantely, and the main thing is how YOU deal with it. You'll only get frustrated and annoyed if you ask questions to people they can not answer. You'll be better off telling us how you deal with it than asking us, as it would be much more informative and inspirational. (Or just go to a support group)

I think you've misunderstood the part where you think I said I wished I had your illness, I stated 'if I had yours instead of mine' (and I never even said I wished so I don't know where you get that from), so that makes all the difference don't you think. Why would I want to wish I have what you have? I'm only going on my own case/conditions, what did you expect me to say in fairness? Don't you think it's obvious that no one would want any illness in their lives.

Also can you elaborate more about where you say nurses sit there and take the wotsit, as that part I don't really understand, nurses don't or won't understand how you feel, but then again it's not their job to. Just what are you expecting, special treatment or something over everyone else?

Re: i have a rare illness called CVS
 

[QUOTE=peanutkp;34501305] if I had your illness instead of mine, I'd be over the moon, I'd be able to live a pretty much normal life as that illness is pretty much mostly in remission.

I would not complain, I'd be happy as Larry. So what do you have to complain about. Think yourself lucky.

Thats what you was basically saying!
For a Nurse on a childrens ward it is their Job to make the patient feel better etc.

what i dont understand is like you have already stated, you cant answer my question, so why do you keep replying to this post?

with one thing i notice with others on here is if they "CANT" answer a question on a post they just wouldnt reply to it!

Re: i have a rare illness called CVS
 

Just seen this thread, really feel for you keriene, best wishes.

Re: i have a rare illness called CVS
 

My husband also has this rare illness and it is very hard to deal with. He has a very serious case of CVS. Last year was this scariest time in my life.... he wrote a WILL in secret and I,at 27 years, a mother of an eight year old and a wife for 7 years , was starting planning for the end....which just ate me alive... I have this contiunious fear of losing my soulmate, my best friend. It was the first time we had an encounter the illness and it was life threathening. As he body started to shut down, which he was sick over 7 weeks in the hospital, lost of 30 lbs and the list just goes on, there was a doctor that was new to the area that gave him a medicine ( I sure its spelled wrong but...thorazine) shot form, and THE only Med to work ...... I am sorry to hear that you are also sick with this unforgiving illness... best wishes and praying for all those who suffer from this sickness.

Re: i have a rare illness called CVS
 

...and this thread is over 3 years old.....

Re: i have a rare illness called CVS
 

Sorry to hear that... Welcome to the forum.

Re: i have a rare illness called CVS
 

It must be comforting to find anyone with the condition even in a thread this old..

Re: i have a rare illness called CVS
 

Hope this is of some help to anyone else with it

http://digestive.niddk.nih.gov/ddiseases/pubs/cvs/

Re: i have a rare illness called CVS
 

Hi, why not try acupuncture or chiropractic to try and stimulate or work on your nervous system that governs your digestive system. Cannot hurt to give it a try, should find a Chiropractor and/or Acupuncturist with experience.

Re: i have a rare illness called CVS
 

Sorry to hear about your very debilitating illness Keriene. Doc's suggestions sounds good, if you've not already tried these treatments, anything would be worth a go.

Re: i have a rare illness called CVS
 

"Last Activity: 18-04-2008 22:47"

Most unlikely she'll see it.