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shayden

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Reply with quote  #526 
Hi, and so very glad to have found a support group. I am a 36 year old female who was diagnosed with CVS this year after about 10 years of misdiagnosis. This year has unfortunately been the worst for me, with four hospitalizations - the longest lasting 22 days - and additional episodes in between. I feel as if I have been sick since April.  

My CVS is stress driven, which is often difficult as I struggle with PTSD from my military service, as well as generalized depression and anxiety. Because of the recent diagnosis and how sick I have been, I am currently struggling with a depressive episode. It is definitely good to read the stories on here, more than anything to know and realize I am not alone.

I am from Texas, but was fortunate to travel to Wisconsin to be able to visit Dr. V recently, and have a new, updated care plan. She truly is an expert in CVS, and the visit with her provided the first sight of hope in the ability to manage this illness. I am ramping up my Nortriptyline dosage, which I hope reduces episodes as it has for others.

I look forward to being part of this group.

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Twyztdf8

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Reply with quote  #527 
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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Twyztdf8

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Reply with quote  #528 
Hello. My name is Izzy. I am a 38 year old CVSer. I'm not sure exactly how long ago I started but it started getting crazy active about 15 years ago. I have been on this site only a couple of times. I am not so good at connecting with people but I need to. My cycles tend to come and go. I think I'm entering another active phase after a year of no hospital stays and only 1 harsh home episode. At one point I was an electrician. Now I struggle to hold jobs. I got excited about my year with no hospital stays and recently signed up for classes to change my career. Surprise! Less than a week after, I ended up in the hospital for two days. I was released three days ago. And I am. Terrified! The last few episodes have presented a new symptom. My blood pressure has started dropping dangerously low during Cycles. To the point of setting off alarms and coming dangerously close to flat lining. I am no longer able to afford meds or doctor visits. I don't know how much more my body can take. I've heard AIDS patients talk about how they never actually die from the disease but from complications caused by the disease. Is this what is happening? Am I dying from the complications? Does anyone else have this low blood pressure problem?
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wynnak

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Reply with quote  #529 
My son (the one with CVS) and I talk about this a lot. Since we almost lost him when he was 13. It’s not the condition, but more the medical care we were getting. My son’s heart rate and blood pressure tend to go up. But he takes meds that have made his blood pressure drop dangerously low. Could it be related to meds? Have they looked into anything else that makes it drop? I have seen a couple people mention this lately and wonder. So you aren’t alone there.. but wonder about the relation.
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Blynda
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NewAdultCVS

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Reply with quote  #530 
Hello Everyone,

My story.  40 year old female.  Began uncontrollable/unexplained vomiting in May 2017.  To make it easy, and to not require too much writing, I've attached a clip it of a spreadsheet I created with all of my episodes detailed.  I was formally diagnosed in July by ER staff, and then by my gastro after he ran every test imaginable on me (endo, colon, GI empty).  They instructed me to stop smoking marijuana, but offered no real additional advice beyond just putting me on meds.  Which I did not accept that time.  I stopped smoking for a month, but gradually went back after feeling well for a bit.  (I have since stopped again) Went symptom free for three months (7/18-10/20) and then BAM, been hit again in October with 3.  The last three episodes did not require a hospital stay, and I was somewhat able to abort with Ondansetron that had been given to me prior, by ER staff.  BUT, I'm lost [frown]  My gastro doesn't seem to know much of anything about this syndrome and with it being so rare, there is no one I know who has ever experienced this.  People always seem to be grossed out and tell me "feel better"...

During an episode, I cannot speak, look or concentrate on anything.  The nausea is SO intense I cannot move or be touched.  I must lay there in a ball with my eyes closed for hours, or retching/vomiting immediately starts.  I have never experienced migraines or really headaches, very rare.  When in the hospital the only thing that would work to take away the nausea was everything in the book, then Haldol.  But with going to the ER like this, comes the treatment like a drug addict and no sympathy.  Never mind the bills. This syndrome has begun to affect my job and relationships with others, because it seems to hit when I go on trips or have important things to do.  I am terrified of the next episode and feel this has already negatively affected my life.  I am really worried about the future.

After reading this site this past weekend I called Beth Israel here in Boston and got an apt. with their motility dept. but not until January. [frown]

Glad to have found a resource for what I have, but I feel I need more information.  Why did this happen to me?  When/Will it ever stop? What are some non-medicinal methods of controlling CVS?


 
Attached Files
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ginny

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Reply with quote  #531 

I think you are going to need to be off cannabis for a few months and probably not consume alchohol to see how things go for you with no substances in your system.  Try to not fast, if this is CVS and not cannabis induced (several doctors have been getting the two conditions mixed up), then you might have a mito component and fasting can be a trigger.  Excitement is a common stress trigger.  Good stress such as excitement over travel plus not getting a good nights sleep and then not eating regularly are commonly reported.  Many say birthdays, holidays, vacations are there biggest challenges.  

Allergies, lack of quality rest, changes in diet also play into this.  

There is a lot of information archvied on this message board.  Also check out the CVSA web page for the Empiric Guidelines, the Study on the Supplements, and the Adult study.  You might find all these to be helpful in understanding what is happening to you.

If this is cannabis induced then staying away from cannabis should be all you need.  If you do have CVS, you are right that having cannabis in your system does often have the ER treating you as a drug seeker.  Several people are using medical marijuana with succes, not sure how that plays into the medical tests the ER runs.


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Moondoo83

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Reply with quote  #532 
My name is Amanda im  33 and have been living with CVS for about 15 years. I'm coming to the scary part of thinking how people would be if i wasnt around. I feel like such a burden on everyone in my life. This last hospital visit was horrible. They treated me like I was a drug addict. My mom kept telling them what i had and no one would listen. Luckily I have an amazing primary doctor and she straightened that out real fast. I'm doing everything that I need to be doing: Changing my diet, taking my meds, monitoring how im feeling. Yet I feel like giving up lately. I know this is not the most uplifting entry, but today is a bad day for me. Hoping for a better tomorrow.
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wynnak

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Reply with quote  #533 
Amanda,

I’m glad you came here for support. My son, the one with CVS, would talk to me about this. That he feels bad for being sick and “doing this” to everyone. CVS affects the whole family. I would first and foremost tell him that there is nothing to apologize for. It’s what his body does, not what he does. He doesn’t have control of what life serves him. It’s how we choose to move forward and over come those thoughts and feelings. We choose to try to adapt. We know Holidays are awfully stressful, so we choose to celebrate in a more low key way. We pretreat and know we will handle whatever comes.

Your mom sounds like a wonderful advocate. As a mom, I will tell you that my life would be awful without the love and caring of my kids. I would think your mom is the same. You are not a burden or chore. We grow and develop as we deal with what has occurred In our lives. That includes the challenges. Holidays are really challenging when dealing with family and friends who don’t understand. It’s what gives us more stress. But we have decided that we will just continue to educate and raise awareness to family and friends. Brochures, studies.. whatever we can give them. People magazine article was the first thing my in laws accepted of my son being sick. We don’t fault them for not understanding. We know that unless you are in the position, you can’t understand.

As for the emergency room.. we struggled even with my son being 12.. they couldn’t really help us. We literally will only go for fluids now, but find ways around that.. our urgent care can do that.. or see if your doctor can help you with a direct admit. There are ways to address your struggles with the medical field. Ask, ask, ask.. your doctor may have ideas as well.,

But in the meantime.. talk to your mom. You don’t need to feel like a burden. Because you aren’t. Don’t feel bad for being sick. You didn’t do it. You deal with it. Which makes you a fighter. Keep fighting [smile]

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Blynda
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Moondoo83

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Reply with quote  #534 
Thank you so much for writing me back. I currently started talking to a therapist as well. Hoping that will give me a little incite into why I should not be feeling the way I do. [smile] 
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bspin26

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Reply with quote  #535 
Hi all. My name is Bonnie. I am a mom to a 12 year old boy with CVS. He was diagnosed with CVS when he was 3 years old. We live in Northeast Ohio. I have an older son as well who is 15. We have been living with CVS since our son was 2. Recently nothing is working and I am feeling lost. I am so glad to have found this site through some searching today and I hope to learn from all of you and be able to contribute as well.  I am an open book so ask away as I am pretty awful about talking about me. My son who has the CVS diagnosis, his name is Jonathon. He is an amazing young man and I really just want to do everything I can to help him. I am looking forward to getting to know other folks who are dealing with this nasty syndrome. I have to say most of what I know is from my own research as most of his doctors, while well meaning, have not been able to give me much other than what I have researched which I am sure is only the tip of the iceberg. I don't know what else to say other than I am exhausted, frustrated and I want to take this awful syndrome from him and have it myself at this point.
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Bonnie [smile]
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wynnak

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Reply with quote  #536 
Bonnie,

Welcome. You have found a fabulous place for support and talking about CVS. I found CVSA and this message board before my son was diagnosed at 12. Things were really bad for us then. So I can relate to your struggles on several levels.  Have you considered going to Children's Hospital of Milwaukee? There are several specialists there that are crucial in CVS research. I know that CVS is expensive and hard to travel with.. But I have driven from Michigan to Wisconsin and would not hesitate to do it for my son, if we lived there. In your research, have you come across the article called hormones matter? We realized that the more my son was growing, the worse his CVS was. Not a way to keep him from growing, but medication adjustment was critical. feel free to post another topic to continue chatting, or message me to talk. You don't have to talk about you [smile] I'm sure you are like me and can talk to your blue in the face about CVS. Also, if your Doctors are working with you, see if they would be willing to look at our For Physicians tab on our web page. They maybe be able to consult the medical advisors.

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Blynda
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bspin26

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Reply with quote  #537 
Thanks for the reply. I did wonder about hormones making his situation worse. I have brought that up but it seems to get me nowhere until I go in and say, Look, this is not working and I need to see someone else. Someone who deals with this syndrome on a daily basis. They referred me to a GI doc.I will go anywhere to help him at this point. 
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Bonnie [smile]
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