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Reply with quote  #61 
Quote:
Originally Posted by Horanimals
Hi everyone!

I thought it might be nice to have a single place to share who we are, and a bit of “our story”.  Many of us know each other, and many of us don’t.  I thought this would be a good way for us to get to know each other and why we are here.

This is posted in both the main forum and in the Adult forum.  Please introduce yourselves in the adult forum if you are an adult with CVS or have an adult family member with CVS.  Post in the main forum if you have a child with CVS or a child in the family with CVS.

Click on the  “  marks in the top right corner of the following post and this will start a new message with the questions you can then answer.

Please do share.  I’m really looking forward to hearing more about you all.
I will start the ball rolling.

Thank you!!
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Reply with quote  #62 
hello, everyone my name is BrenAda and I have an adult daughter who is suffering from cvs although doctors may not know or is not taking it seriously.  My daughter's story is, since as early as the age 8, my daughter Nini, has had stomach pain often but doctors couldn't figure it out.  she also had the naseau and vomitting and now still does.  my daughter is now pregnant with cvs and the doctors in chicago is only treating her as a high risk pregnancy but is not treating the cvs because maybe they don't know how to treat it.  my daughter is currently in the hospital with her high risk pregnancy and i don't the believe the doctors are taking the cvs seriously.  she's had numberous of testing done which all came back normal therefore, the doctors have either passed it off as having gastrastitis, stomach flu, or stress.   Nini has been at several different hospitals for being dehydrated where IV had to taken to hydrate her and sometimes this could go on from days to up to a week of back and forth to the hospital at wee hours of the night or day.  and now that i know what it is i can't find a doctor to treat her because I know of noone in chicago and i called dr. vekatesen in milwaukee, wis. and the receptionist says i need a referral, so now i lost again.  any suggestions would be greatly appreciated.  Signed:  "Frustrated and Tired Mom, BrenAda.


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seraphim_amon

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Reply with quote  #63 
I am way new to this group!
My name is sharon, I am 34 years old, and was recently diagnosed with CVS, and abdominal migranes.... I have spent the last 7 months in and out of er's, and hospitals due to this disease.... I have lost 60 lbs, my heart is having issues, and I have lost almost all my muscle mass.....
I am a veteran of the US army, so the only insurance I have is the horrible substandard care of the VA hospital...... I am married to a great man who is always by my side during these episodes. However last weekend I was in the hospital, I was given 2 imitrex shots (which helped immediatly) and then was denied by the VA to use it..... apparently one of my other meds (effexor) can have a fatal reaction when combined with imitrex......
I am scared to death now..... I finally was able to eat, sleep and live pain free for 5 days........I felt on top of the world, and then had my hopes crushed when I was told I couldnt take it anymore because it can cause serotonin syndrome..... Now I am left with nothing.......
The docs tried to say it was in my head, but an outside doctor, and good blood tests, as well as illimination of every other diagnosis confirmed otherwise.....
Right now the only meds I take are Omeprazole, Effexor, Trazadone, and a catapress 7 day patch........ I have this so severe at times I cant see or hear or walk or talk.... Sometimes I just want to end it all(I am not suicidal so dont worry)
What do I do? How do I live with this, I cant work, I cant even walk more then a block without wanting to pass out....I need info and to know I am not alone in this terrible thing..... I also have fibromyalgia, and have also recently had lesions show up on an MRI..........As well as polycystic ovarian disease......I also would like to know if it causes hard long menstrual cycles? I have been bleeding almost everyday since march..... I tell the doctors and they dont seem to care......I need advice bad

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There is much suffering in the world - physical, material, mental. The suffering of some can be blamed on the greed of others. The material and physical suffering is suffering from hunger, from homelessness, from all kinds of diseases. But the greatest suffering is being lonely, feeling unloved, having no one. I have come more and more to realize that it is being unwanted that is the worst disease that any human being can ever experience.”

~ Mother Theresa
20th century humanitarian
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Reply with quote  #64 
Hi, I am new to this message board... My name is Kristin.  I am 23.  I have been sick for 5 years and got diagnosed 2 months ago.  I live in a small town where you have to travel for long distances just to see a good doctor and when a good doctor finally comes to town... they never stay long.  The doctor that diagnosed me up and left the clinic without ever saying a word so I am doctor less again.  I am on no medicine that prevents anything only promethazine and ativan that if I take soon enough I can stop the episode.  But when I take it and it doesn't work it seems almost worse.  Also once I take it I cant stay at work as it makes me extremely drowsy. 

I am sorry to read that these terrible things happen to all of you.  Sharon to answer some of the things you asked in your message I can only give you my experiences.  I too have very irregular menstrual cycle and I usually get sick around that time also.  I have most the same sensitivities as you to light sound and movement.  The worst is movement.  You sound like me 3 years ago.  I lost my job from missing work... with this illness people treat you like you are lying or like it is all in your head.  It makes you so mad to hear that.

I used to feel alone but I have been reading some of the things on this site lately and it helps to know someone else knows what you struggle with. 


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kirkjean98

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Reply with quote  #65 
Hi,
This is Jean  the mother of 21 years old daughter with CVS. This is a response to kwestover84.
Kristin,
My daughter who is 21 years old also  has had episode during her period (9 out of 10 times) or a day before period starts. The doctor thought maybe her hormone is inbalance so she is put on lowest dose of birth control pills since Feb and she stayed well then till this month she herself decided to take off the pill since she ran out of prescription, then, she got one episode last week. She of course will be back to the pill again this month. You may want to talk to your doctor to try this out and I hope it will help you.

We know CVS is a disorder and can not be treated and we need to avoid the trigger if possible to avoid having episode.

Good luck to you all.

Jean (Joyce's mom)

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Jean Williams
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mahler1987

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Reply with quote  #66 
Its not uncommon for women to episode around their cycle.  Many have had much luck with the Yasmin birth controll pill.  Something about its formulation and I think the small amount of potassium in it is whats believed to make a difference for these ladies.

Pattie

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I may have CVS but CVS is not me.
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ginny

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Reply with quote  #67 
My daughter was the first of the CVS girls to try Yasmin.  This was around 2002, when CVSA had Listserv and no message board.  Her MD felt that the formulation of the progesterone in Yasmin would be what helped with the CVS cycles.  And it worked perfectly but she had to go off the pill due to edema. 

Several others then tried Yasmin and were successful.  One of the mom's said her daughters doctor felt that Yasmin worked probably because it increased potassium.

We never found out what is the reason Yasmin can often help.

I do remember that several on the listserv had tried progesterone only BC and became sicker.

My daughter has since tried to newer version of Yaz without any success.

Yasmin is not one of the previously suggested hormonal meds for CVS, previously the newsletter would suggest Loestin. 

No other BC approach worked for my daughter prior to Yasmin and it seems that this is the only one that could have kept her episode free.  She had no CVS for the 30 months that she was able to take it.

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ginny CVSA Moderator
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kirkjean98

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Reply with quote  #68 
Thanks you all to share with us about the Yesmin. We really appreciate it.

What my 21 year old daughter took was Yez instead of Yesmin. Do you know what the difference is? She was episode free for 4 months until she took off. One of the reasons she took off was her breast got bigger and she was a full size C before BC and after taking the pills, she got about D size and it was tender so uncomfortable the whole time. She is only 5'2" and 107 lbs so she hate the chest makes her so out of proportion, LOL. Should we switch to Yesmin?

If it is potosium that contributes, I wonder if anyone ever just try the potosium. Also, does any one have good doctor to recommend? We do not have doctor that really knows enough about this. One doctor from our last hospital stay put her on Cyproheptadine *mg each day. Does anyone ever try this and how did that work for you? She refuses to take this one and BC at the same time since she normally eats healthy and live healthy and does not like what side effects will bring her for taking any medication.

Can anyone share with us if you have tried Cyproheptadine?

thanks so much and I think we benefit from one another to share our experience together.

Jean (Joyce's Mom)

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Jean Williams
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heather

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Reply with quote  #69 
I love Yasmin!  I started it because of a suggestion from Ginny, and it has definitely helped.  I got sick every month for 6 months.  After starting it, I have had only a few cycles that were around the time of my menstral cycle.

I don't think the potassium is what stops the cycles.  I seem to recall that it was something about prostaglandins, but I don't remember exactly what.  Yasmin can increase potassium, and in some people that can be harmful.  For those of us who like to puke a lot, we can use the extra potassium, so it all works out! 

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kirkjean98

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Reply with quote  #70 
Thanks, Heather for sharing the info with us for your experience of using Yasmin.

I do want to share the background of my daughter's history so that you know the trigger of CVS can change as you age.

Her first episode occurred when she was 6 when her dad and I had a very bitter divorce, and she was kidnapped by her dad and when I found her, she was no longer allowed to see me without him around and she was never allowed to spend any night with me any more. Anyway, it was so heartbroken and such truma in her life. She had episodes lasted one week and got sick about every 2 weeks. She puked blood after threw up every minute or two. anyway, she was treated by a big group of doctors. Then finally diagnosed by Dr. Li for CVS. She was in very intensive counciling 3 times a week, plus anti depression and anti anxiety drugs. Finally it stopped after over one year.

She then was fine till she was 10 and it was my fault again and I had to break up with another guy and it was heart broken for her since she bonded with that man who intentionally did that to keep me there. Well, that was when she was 10 and we did the same thing and treated her after 8 months of episode but she had a like once 3 to 5 weeks and the episodes last a week as usual.

After that, I made sure to provide her very stable life without more trauma. She finally had a happy childhood after 10 and never got sick again. Then, until she went to college as a freshmen, she became vegetarian plus leaving home and breaking up with her first love, etc. It came back to her and almost always during her period. I put her in therapy again, then she got fine in Sophemoore year. Then now, had another boy friend last summer, then the unstable relationship triggered it back again, then, finally the relationship is stable again now, in her junior year. Now, there is no relationship issue,but she was sick during period. Anywa, Yez stopped the episode for 4 months so I will make sure she takes that again after her period started again.

Thanks for listening to he story. I hope this can help us research CVS  to find better cure for all.

Jean

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ginny

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Reply with quote  #71 
I think you could get in touch with the manufacturer of Yaz and Yazmin and ask about the formulation difference.

Heather, I am thrilled you have done so well on Yasmin.  You are right about prostaglandins being released or increased hormonally (Pattie might be better here with her background).  This happens to males and females so it is not only a female hormone.  Dr. Fleisher said if an cycle was as simple as prostaglandin release then we would be easily able to get rid of CVS symptoms.

But this does not mean that inhibitors of prostaglandins do not have their place with CVS.  We seldom talk about this part of CVS.  Taking an NSAID is discussed in the Empiric Guidelines and NSAIDs are helpful to suppress prostaglandin release.  

Beginning a few days before the menstrual cycle is due to begin and perhaps around ovulation time,  some doctors will suggest taking an NSAID.

Our doctor felt Yasmin worked because of the formulation of progesterone as well as the BC helping suppress prostaglandin release.  Another doctor suggested to his patient it could be the increase in potassium.  And there is the prostaglandin possibility but other brands should be helpful if it is prostraglandin release.

If your daughter did well on Yaz but her bra size increased, maybe she would be able to adjust using a minimizer bra?  Seems to be preferable to vomiting.  I don't recall the side effect of increased breast size going away after being on the pill.  She certainly has not weight to lose.

Rather than sending her alone to counseling, could you do some sessions together?  You have both been through a lot throughout her life time.


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ginny CVSA Moderator
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cindypope

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Reply with quote  #72 
Hi all,

My daughter also has CVS cycles 9 times out of ten when she has her period. We will consider Yasmin or Yaz if starting Ami this summer doesn't help.

I did a search on line for Yaz vs Yasmin and found that some people who had a negative side affect with one sometimes had a fine time with the other. I know many on the website have had good luck with these drugs for the trigger of menstruation.

Thanks


Cindy

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kirkjean98

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Reply with quote  #73 
Thanks Ginny for your long email and advice. I really appreciate it.

Yes, when Joyce was 6, I went to counciling with her sometimes or sometimes just by myself. My life has been great since I met my husband 10 years ago. He is a loving father for Joyce and I don't know what Joyce will be if my husband wasn't there for her during her teen age days. I grew up in Asia and it was difficult for me to raise my girl in different culture.  My husband did protect her from any harm. Joyce said she had a happy childhood and basically she just blocked or forgot about all the bad part of childhood.

I know she is happy with her current boy friend even he is not the one to be married to. She is in Univ of FL on dean's list with Environmental Engineering major and is doing her internship this summer. We are very proud of her and her accomplishment. The CVS sure interrups ours and her life ( and all of yours too) and we all wish we can conquer this. Joyce is to go to grad school and when she graduates with a job (hopefully good job), she plans to donate some money for our CVS research so that maybe one day we all can have our life back again.

It is so nice to know many girls/women (especially young ladies) suffer CVS during period. Many do benefit from Yez or Yasmin.

I thank you all for your support and sharing your experience with us.

Jean

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Reply with quote  #74 
Your name: Eileen M

Who is the CVSer in your family and what is their age?
I'm a 21 year old with CVS, still waiting to be 'officially' diagnosed.

Please tell us your story, and how you came to be here:
My CVS symptoms only started occurring recently. I'm diagnosed with migraines, and have always had a 'nervous stomach.' In Sept 07 I went to the ER twice with unresolvable vomiting. In October, the same occurred, and they admitted me this time. I was vomiting blood as I had torn my esophagus from the retching. Since then it's been about a monthly occurrence visiting the ER.

Every time I go the the ER they assume I'm bulimic (I've been chronically underweight since age 10). The GI doctor I saw claimed that CVS only occurred in children, so I didn't have it. After that I did further research, and every article I've read I have textbook symptoms.

My PCP doesn't feel comfortable diagnosing me with it as she's not very familiar with it, so I'm currently in search of a medical professional in the Boston area with knowledge of this illness outside of pediatrics.

In my current or ‘previous life’, I am/was a:
I'm a full time student at Simmons College, with a joint major in math and economics. I work part time at hospital handling paperwork. CVS has greatly impaired my ability to perform both academically and professionally.
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Reply with quote  #75 
Eileen-

I was just diagnosed approx. 2 months ago... I had to print out information that Dr. Fleisher sent me from his website and give it to my doctor(s) to read.  Had to give it to about 3 before someone would help and now she left 2 weeks after promising that she would help me make it through this.  I know that Dr. F is very willing to help anyone that needs it.  His contact information is found on the CVS website... also if you email the CVS association they will send you a list of clinics and doctors in your area that treat CVS.  I know there is a CVS clinic in Wisconsin and the Mayo clinic in MN both can help...  

I hope this helps... and also welcome.  I just started on the message board myself and besides the information and advice from seasoned CVS sufferers I find comfort in knowing I'm not alone. 
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