Hi,

I am a caregiver of my husband, Dean who has CVS. He is 53 years old and has
been dealing with this awful disorder since 1989. Of course at first we didn't
know it was CVS and was DX many times as food poisoning. I have been montioring
the boards for a long time now getting very valuable information that has really
helped. The most helpful is realizing we are not alone. Luckily for us it is
just the two of us and we don't have children involved. My heart goes out to
those with children and the children themselves. Oh you dear sweethearts. It
brings tears to my eyes as I type this. My heart gets so overwhelmed with
thoughts of your struggles.

As I said it is only the two of us in our household. We live in Lafayette
Colorado and I work full time. I maintain the medical insurance and cover both
of us. Our story and illness become extreme at the beginning of 2005. We are
not sure what the trigger was however it have been a cycle of every three months
with hospitalization this year. The doctors don't know what to do for him.
There are long periods of 2005 that he doesn't even remember. Weeks on end that
mean nothing to him. We started the New Year with a seven day hospital stay.
The month of January was spent either in the hospital or recovering. Then in
March we had another 7 day hospital stay and a month of recovery. June was only
a day hospital stay however we got him to a University hospital which I believe
made a world of difference in his care. The University of Colorado hospital is
not the newest or the brightest but their 'patient' care is top notch. IV
fluids and pain meds were given to him on time and
montiored continuly. At one point we had four doctors working on him. At the
end of August we had a three week vacation scheduled in Europe and Dean had been
doing well. We thought we were prepared as we had the meds, zofran, phenregren,
compazine, ativan, elavil etc and thought we could handle being away. Well it
didn't turn out as we had hoped. Dean was sick 15 out of the 22 days we were
gone with 2 hospital stays. When we got home we went to his Gastroenterologist
at University Hospital to see what was next however he was at a loss.

Back in January I joined the CVS Association cause I was pretty sure this is
what Dean had/has. All the symtoms were perfect for what was going on. I
received the newsletters and access to emails via this message board. I learned
about Dr. Fleisher. I read articles Dr. Fleisher wrote. So when we returned
from Europe I wrote Dr. Fleisher asking for advice or assistance on what to do.
He wrote back and said 'I sincerely think I can help your husband'. OMG...just
seeing it in writing that someone 'sincerely' thought they could help..I was
overwhelmed. We talked on the phone and he seemed very caring and concerned.
We made an appointment and drove to meet with him in Columbia, Missouri. We
were scared that we had our hopes up to high. We meet with Dr. Fleisher and
Dean felt such relief to be heard AND understood. We walked away with a signed
DX, a plan and high hopes. That was early October.

Right now were are struggling a bit as we have hit the 3 month cycle once again
however we believe we have headed off two episodes so far via zofran and ativan
which is Phase II of our plan by Dr. Fleisher. In the morning when Dean wakes
he feels nauseous. STAT we give him 3 - 8mg of zofran ODT. If this helps him
get rid of the nausea then we hold there. If later he feels nausea again then
we do 3 - 8 mg of zofran ODT and 2 mg ativan and he sleeps. When he wakes if he
still feels nauseous then we do it again 3 - 8 mg of zofran ODT and 2 mg ativan
until he does not feel nauseous when he wakes. Naturally if we can get the
zofran to work alone then we do that as he hates his days wasted but we don't
wait if they aren't helping to give him the ativan and call it good. (Ativan is
sedating where zofran is not. So if the zofran works then he can 'function'
during the day without feeling like he is in a fog or 'lala land' as we call it.
The ativan definitely sends him into 'lala
land'.) We just don't want to have to page Dr. Fleisher and head to hospital
if we can help it.

Sorry for the long story. My two suggestions are: Join the CVSA if possible.
The membership does cost monies and they are hard to come by at times. They are
a wealth of information and a very caring group of people. I will continue to
join and support them as best I can. Get to a doctor that has experience with
CVS as soon as possible. Don't wait. Dr. Fleisher is excellent! He is a 10
hour drive from me, one way but well worth the time, effort and expense. He is
now Dean doctor 24/7. Dean is his 87th adult patient although he has over 3000
patients with CVS. If I can help direct to a doctor via the list I have please
let me know and I will either email a list or mail the list to you. I am a
computer nerd so I am on email most days (and nights) so your emails will reach
me and I do reply quickly. I can be reached at dspencer@... or
dspencer1956@... (the yahoo.com address I don't montior regularly but the
sybase.com I am on daily)

My heart goes out to you all. Especially the little ones. And the little ones
who don't have CVS but have a brother, sister or family member who does. They
are hurting too. It is a hard one to understand. My thoughts and prayers are
with you all.

Diana

cyclicvomitingsyndrome@yahoogroups.com wrote:

There are 3 messages in this issue.

Topics in this digest:

1. Adults w/ CVS?
From: bethshea76
2. Re: Adults w/ CVS?
From: dale van
3. Re: Adults w/ CVS?
From: Brittany Davis



________________________________________________________________________
________________________________________________________________________

Message: 1
Date: Fri, 28 Oct 2005 00:58:16 -0000
From: bethshea76
Subject: Adults w/ CVS?

Hi- I am 29 yrs. old and have had what I now believe to be CVS on the
same day every month without fail for the past year. I have baffled
every doctor I have gone to and they all want to believe it's
pscyhological, but we all know better... the last doctor I went to
prescribed me ativan and zofran- he said take the ativan the night
before my episodes start... I am also thinking of changing my diet to
macrobiotic to see if this helps. I am wondering if any other adults
out there have any insight into how to stop this dreadful disorder. I
would appreciate any advice/tips/help. Thank you!





________________________________________________________________________
________________________________________________________________________

Message: 2
Date: Thu, 27 Oct 2005 18:30:45 -0700 (PDT)
From: dale van
Subject: Re: Adults w/ CVS?

Hi Beth,
My 31 yr old daughter has CVS and saw Dr Olden at the Scottsdale, Mayo Clinic.
He is very knowledgable about CSV as well as a Psychiatrist and
Gastroenterologist. These are some things we found to help or were advised to
do.

Take Zofran prior to the episode. It doesn't work well if you have already
triggered. I haven't heard of ativan working as a prophylactic very well.
Eat low fat, high carb/protein.
No alcohol
Learn your stress triggers and try to chill
Lots of sleep
Never fast
Eat more frequent meals
Possibly an anti-depressant
Airline travel can be a trigger (related to barametric pressure triggering the
episode)
Stress is a definant trigger

Following the above suggestions my daughter has now been 1yr and 8 months
without an episode.

Try to read all the previous e-mails; they discuss alot different things that
are of support.

I hope some of these suggestions are helpful for you.
Best regards,
Ann


bethshea76 wrote:
Hi- I am 29 yrs. old and have had what I now believe to be CVS on the
same day every month without fail for the past year. I have baffled
every doctor I have gone to and they all want to believe it's
pscyhological, but we all know better... the last doctor I went to
prescribed me ativan and zofran- he said take the ativan the night
before my episodes start... I am also thinking of changing my diet to
macrobiotic to see if this helps. I am wondering if any other adults
out there have any insight into how to stop this dreadful disorder. I
would appreciate any advice/tips/help. Thank you!





---------------------------------
YAHOO! GROUPS LINKS


Visit your group "cyclicvomitingsyndrome" on the web.

To unsubscribe from this group, send an email to:
cyclicvomitingsyndrome-unsubscribe@yahoogroups.com

Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.


---------------------------------




---------------------------------
Yahoo! FareChase - Search multiple travel sites in one click.

[Non-text portions of this message have been removed]



________________________________________________________________________
________________________________________________________________________

Message: 3
Date: Thu, 27 Oct 2005 23:52:34 -0700 (PDT)
From: Brittany Davis

Subject: Re: Adults w/ CVS?

Hi Beth,

I am Britt, I'm 17 and have had CVS since I was a baby.

One of the best things you can do is find a Doctor who knows and understands CVS
who can DX you and also get a plan together. Dr. Fleisher is probably the best
out there for adult CVSers.

You might want to talk to your Doc. about taking a tri-cyclic anti-depressant
such as Elavil. You also may want to check out the information on the benefit
for CVSers to take CoQ10 w/ possibly L-carnitine.

Benadryl works awesome for me. It's affordable, and mixed with zofran an
vicodin, it can sometimes knock out an episode. Maybe you can take it with your
ativan and zofran the night before?

Anyway, if you have any questions feel free to ask. I am pretty young, but I am
an old pro with this whole CVS-ness.

Hope you are feeling well,
Britt
dale van wrote:
Hi Beth,
My 31 yr old daughter has CVS and saw Dr Olden at the Scottsdale, Mayo Clinic.
He is very knowledgable about CSV as well as a Psychiatrist and
Gastroenterologist. These are some things we found to help or were advised to
do.

Take Zofran prior to the episode. It doesn't work well if you have already
triggered. I haven't heard of ativan working as a prophylactic very well.
Eat low fat, high carb/protein.
No alcohol
Learn your stress triggers and try to chill
Lots of sleep
Never fast
Eat more frequent meals
Possibly an anti-depressant
Airline travel can be a trigger (related to barametric pressure triggering the
episode)
Stress is a definant trigger

Following the above suggestions my daughter has now been 1yr and 8 months
without an episode.

Try to read all the previous e-mails; they discuss alot different things that
are of support.

I hope some of these suggestions are helpful for you.
Best regards,
Ann


bethshea76 wrote:
Hi- I am 29 yrs. old and have had what I now believe to be CVS on the
same day every month without fail for the past year. I have baffled
every doctor I have gone to and they all want to believe it's
pscyhological, but we all know better... the last doctor I went to
prescribed me ativan and zofran- he said take the ativan the night
before my episodes start... I am also thinking of changing my diet to
macrobiotic to see if this helps. I am wondering if any other adults
out there have any insight into how to stop this dreadful disorder. I
would appreciate any advice/tips/help. Thank you!





---------------------------------
YAHOO! GROUPS LINKS


Visit your group "cyclicvomitingsyndrome" on the web.

To unsubscribe from this group, send an email to:
cyclicvomitingsyndrome-unsubscribe@yahoogroups.com

Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.


---------------------------------




---------------------------------
Yahoo! FareChase - Search multiple travel sites in one click.

[Non-text portions of this message have been removed]



---------------------------------
YAHOO! GROUPS LINKS


Visit your group "cyclicvomitingsyndrome" on the web.

To unsubscribe from this group, send an email to:
cyclicvomitingsyndrome-unsubscribe@yahoogroups.com

Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.


---------------------------------




---------------------------------
Yahoo! FareChase - Search multiple travel sites in one click.

[Non-text portions of this message have been removed]



________________________________________________________________________
________________________________________________________________________



------------------------------------------------------------------------
Yahoo! Groups Links




------------------------------------------------------------------------





---------------------------------
Yahoo! FareChase - Search multiple travel sites in one click.

[Non-text portions of this message have been removed]