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ginny

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Reply with quote  #1 
Sent by a member:

I met a sufferer at the convention last month, a lawyer in his early 30's maybe, who has an episode every 2 months for 14 hours.  He had never met anyone who suffered from the same disorder and was thrilled to meet so many people who suffered from the same, to find that he is not alone.  He takes 45 minute showers and his wife "massages his feet" in between.  This I found unusual.

 

My 13-year-old son had an episode 2 weeks ago.  He took Ondansetron, lay in his dark, quiet room with the puke bucket at hand,  and I asked him if I could try something.  I proceeeded to massage his feet. 

 

The relief was instantaneous.

 

After a few minutes, he decided to massage his feet himself.  He continued to do so. The episode lasted 45 minutes instead of 8 hours, no vomiting, no residual stomach pain.  This was his shortest, least painful episode yet.  It may have been a fluke (we applied a heating pad for the first time also) but you can be sure we will try this 3 months from now when he has his next episode.  I thought  you might be interested and want to pass this info on.  I will research reflexology online and see what I can find.

I hope we are on to something beneficial!

 


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ginny CVSA Moderator
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OntCVSMom

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Reply with quote  #2 
well I know that there are pressure points in the feet to relieve nausea because when I had my last child, Theresa, the one who ironically has CVS, I was very very nauseaous during a prolonged "transition" phase of labour. My doula massaged my feet putting pressure on a particular spot and this relieved the nausea.
Also we too have had success with a heating pad - but it doesn't always work.
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Zebra

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Reply with quote  #3 

 

I have an 11 you daughter that had her first CVS episode at age 8, and I was accused of "Uncaused" and she was accused of being "Suicidal", or pretending! The heartbreak of watching your child truly suffer and they laugh at you and make fun of you, is unreal! After 3 years of this, I have finally had my fill of this horrid treatment and I am FIGHTING BACK! Here is my plan:

1) Gather all the information you can - Tell the world!
Stick to well known and recognized sources like: WebMD, Mayo Clinic site, Johns Hopkins site, etc. Stick to the bare bones info. Too much extra stuff, and they will not read it.

2) Make an "Informative Document"
Keep it to about 2 pages, 12 pt. type, indent paragraphs, and double space between paragraphs. This makes it easy to read. Most of the medical people who NEED to read it, are lazy, and more self serving & find it easier to deny CVS exists than to actually check it out!

Make many copies. When you encounter anyone who does not know about CVS, give them a copy.

3) CVS Diagnoses code: #536.2
Make sure you place this at the top pf the first page: "CVS Diagnoses Code: 536.2" This will clue them in that there really IS a disease called CVS!!

I am tired of being accused of making my child sick, or them accusing her of "faking", or deliberately doing something to make herself sick! I am tired of both of us being treated rudely. After 3 years of this - "The buck stops here!" I have declared WAR!! I will not stop until CVS Patients and Family are treated for the disease and treated with respect! Join me in this war! We CAN win, but we have to be willing to FIGHT!

4) Attorney Name and Phone Number
Place your Attorney's name and phone number at the bottom of the page - if nothing else convinces them that you are SERIOUS, this should! I showed my "Document" to my attorney and he gladly said YES put his info on there, that should stop the Harassment!!!

5) Fired Because of CVS?? School on your Back?
Did you know that your employer cannot fire you because of your illness? They CAN re-assign you to another position (at the same pay & Benefits). And a school cannot suspend your child for a large number of absences. The law states: "Every child is entitled to a free education, appropriate to their needs." This means if your child cannot attend school enough days of the school year to pass, then the school MUST hire a teacher to go to the child's home and tutor him/her. I had to enforce this with my oldest son, who was dyslexic - they had to hire a teacher JUST FOR HIM. I had to threaten them with going to the news media and suing the school district, to get them to do it. Well, it worked - he graduated a year before his classmates!!! You can fight City Hall (or the school District) and WIN!!

This is WAR and no war was ever won, unless SOMEONE was willing to FIGHT. We MUST win, and we WILL win! I will be curious to learn the response to YOU trying these things!


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Susan Trumblay
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LBias

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Reply with quote  #4 
Good for you! I agree and support you in this war! Thanks for the advice. I plan on following it. Am looking for a lawyer as I type!
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Harper

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Reply with quote  #5 

Has anyone else tried accupucture..? I have been taking my Sister who was disgnosed a year ago after a year and half of all the flu and food poisioning and of course faking it.
Hot baths seem to help and feet rubbing... the last episode was much lighter... but increased stomach pain after?  this is a new side effect..
I'm so thankful for this website... it helps to keep my sanity..   I have another friend that I have found that has this terrible diagnois... i read as much as i can..  prayers for all that suiffer
i do hope the cure is if found soon or at least a remedy to kick its butt and make it a little more livable


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Jennifer Harper
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MichelleNichole

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Reply with quote  #6 
Definatly going to try the foot rubbing with my daughter the next time we encounter an episode...great advice here guys thank you and god bless
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Michelle Steele
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ginny

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Reply with quote  #7 
Bump
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ginny CVSA Moderator
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Anela

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Reply with quote  #8 
A few things that sometimes help me:

*Colostrum - I washed it down with water, and it kept my stomach steady for hours. I've taken it in yogurt in the past, and it didn't help.

* Epsom salt baths - I still get sick at times, but these have allowed me to drink a quart of water, slowly, if I can stay in there for a few hours , re-adding water as it cools down. You could try shorter baths for a glass or two of water. I also thought that the epsom salts might be helping to hold water in my body.

* Smoothies made from coconut milk, flax oil, and a few other things - greek yogurt. Check out the 21-Day tummy book. I haven't completely changed my diet, and still eat a lot of things that make me sick (cravings!), but I've gone two or three days without getting sick, at times. It's usually persistent, but I've had a week here and there, as well - only a few times -where I was amazed that I hadn't been sick for an entire week. It felt really good.

* Gelatin powder added to hot soup. You can also use the green can (great lakes gelatin) that doesn't gel, but my health food store only stocked the red can. I made bone broth last week, and need to get it into the freezer, because I've been too chicken to try it by itself - I'll be adding it to soup.

* I'm taking L-Glutamine added to bottles of water, first thing after I get up (one capsule mixed into the water). I found powder on Amazon, and there are testimonials on a few products, from people who used this, and/or things like probiotics, gelatin, etc to help their problems, like leaky gut syndrome.

* Gatorade doesn't help me - it makes me sick - but I sometimes add coconut water to smoothies. I'll be making iced tea out of rooibos vanilla tea, and I'm wondering if I can add anything like pedialyte to it. probably not, but I'll find a way, maybe add it to smoothies, too. I've been getting dizzy, especially when under stress.

* I can't just eat nuts anymore, but I can eat walnuts and sunflower seeds, when they've been soaked and dehydrated. I make a vegan recipe out of them - more than one - and they tend to be okay, unless something else has aggravated my stomach.

* Purple cabbage slaw. the recipe is free on the internet, by K. Snyder. April of last year, it helped me to eat chocolate ice cream, not long after I finished it. I'm wondering if it worked so well, because it was in the fridge for twenty-four hours (over that). I usually eat it right away now, and it doesn't always help. It's a mixture of red cabbage, nutritional yeast, apple cider vinegar (the healthier stuff), tamari (low-sodium), and tahini.

* I make my own salad dressing, from her book. I'll share the recipe here at some point, if there's a thread for such things. For a little while, a year ago, it helped me to digest salads. I was also able to drink a grapefruit, carrot, and ginger juice (homemade), something I am rarely able to do - fruit hasn't agreed with me for years.

* Oatmeal with banana, cinnamon, raisins, maple syrup or honey, and flax oil or coconut oil. I need to get coconut back into my diet every day, because it really helps me. It gives me energy, and perks me up. This breakfast always agrees with me, and I don't know why I don't eat it every day. I have started to add a little almond milk.

I'm forgetting something, but most of my tips are dietary, as I've already mentioned. Over the past two hours, I've had a small cup of hot and sour soup (three of them), with half a teaspoon of powdered gelatin added to each one. So far, so good... now I'm drinking sips of coke, because I saw that a doctor from the mayo clinic had recommended that to someone with gastroparesis, for some reason.
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robyntm

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Reply with quote  #9 
thank you for foot massage advise. My 20 yr old daughter events are lasting 10-15 days. We will try this..
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robyn ROBYN MILLER
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bikridr

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Posts: 6
Reply with quote  #10 
I've been a sufferer for 13+ years. The last 5+ years have been hard with episodes lasting 2-4 days, with a frequency of 1-2 times per week. I used to go to the emergency room after 3 days, but thanks to my new methods and diet, I haven't been to the ER in about 2 years. I attribute it to these tips I learned, and by changing my diet to one that is plant based, free from processed foods, and consists of lots of "smoothies".

Despite the frequency of attacks, I can sometimes thwart off the vomiting side of things after about 6-8 hours of vomiting by sipping hot tea with honey, sometimes with a little milk. Some days I just puke it up and return to bed for a couple hours until I'm awoken by vomiting once again. Then I make my tea, and hope it stays down. Most days that it works, it takes a couple teas to calm the episode into a severe stomach/throat/back ache. Much better than vomiting, but still painful. If the tea has worked, I will take my back pain meds(thank you pain management), and try to sort of meditate if you will. It seems the retching has caused harm to my back muscles and weakened them, I think that is the real cause of my herniated discs. The pain meds definitely help with the pain side of things, though on day 1 after/during puking/still dry heaving at times, unfortunately even narcotics won't touch the pain. Maybe someone has a secret to overcoming the stomach pain that I'm missing?

Meditation is something else that has helped me tremendously, unless the episode is accompanied by a migraine, in which case all bets are off. I learned to meditate by lying with my arms by my side and at first concentrating on my breathing. This was extremely difficult to master, especially on a sick day, but now that I can meditate easily, it has proven to be an asset, helping calm my body down from a tense retching mess to one that is at least a little less tense. There are plenty of sites online to learn meditation, so I won't list the steps here, but try it!

Another thing that helps me is to get dressed, as simple as that sounds. My body changes tune a little, and it's a little easier to pretend that I'm not having a sick day. If it's sunny but cold out, I will try to sit near a window in the sun, like a cat. Or if it's warm, I sit in the sun, outside. It has a similar effect to taking a shower or bath, as others have suggested, there's something about the warmth enveloping my body that soothes me. Baths help too, but I only have a shower at the moment.

I have yet to find out how to stop and episode from occurring in the first place though, so I'm anxious to learn some methods on how to do so, if anyone has figured it out.

I've just now been properly diagnosed with cvs, so I'm sure I will have some other meds on board to help before too long, thanks to a new doctor.

Having lived with cvs this long without proper treatment has led me to these steps I take to help ease the episode, and truthfully, they don't always work. But it's worth the effort if it helps even a little!
I'm writing this in between puking bouts, hoping it helps someone. Nothing is working today, despite my efforts, and I turned to this thread for ideas. Thanks everyone for the tips.
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Cvsintoronto

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Posts: 3
Reply with quote  #11 
Quote:
Originally Posted by Zebra

 

I have an 11 you daughter that had her first CVS episode at age 8, and I was accused of "Uncaused" and she was accused of being "Suicidal", or pretending! The heartbreak of watching your child truly suffer and they laugh at you and make fun of you, is unreal! After 3 years of this, I have finally had my fill of this horrid treatment and I am FIGHTING BACK! Here is my plan:

1) Gather all the information you can - Tell the world!
Stick to well known and recognized sources like: WebMD, Mayo Clinic site, Johns Hopkins site, etc. Stick to the bare bones info. Too much extra stuff, and they will not read it.

2) Make an "Informative Document"
Keep it to about 2 pages, 12 pt. type, indent paragraphs, and double space between paragraphs. This makes it easy to read. Most of the medical people who NEED to read it, are lazy, and more self serving & find it easier to deny CVS exists than to actually check it out!

Make many copies. When you encounter anyone who does not know about CVS, give them a copy.

3) CVS Diagnoses code: #536.2
Make sure you place this at the top pf the first page: "CVS Diagnoses Code: 536.2" This will clue them in that there really IS a disease called CVS!!

I am tired of being accused of making my child sick, or them accusing her of "faking", or deliberately doing something to make herself sick! I am tired of both of us being treated rudely. After 3 years of this - "The buck stops here!" I have declared WAR!! I will not stop until CVS Patients and Family are treated for the disease and treated with respect! Join me in this war! We CAN win, but we have to be willing to FIGHT!

4) Attorney Name and Phone Number
Place your Attorney's name and phone number at the bottom of the page - if nothing else convinces them that you are SERIOUS, this should! I showed my "Document" to my attorney and he gladly said YES put his info on there, that should stop the Harassment!!!

5) Fired Because of CVS?? School on your Back?
Did you know that your employer cannot fire you because of your illness? They CAN re-assign you to another position (at the same pay & Benefits). And a school cannot suspend your child for a large number of absences. The law states: "Every child is entitled to a free education, appropriate to their needs." This means if your child cannot attend school enough days of the school year to pass, then the school MUST hire a teacher to go to the child's home and tutor him/her. I had to enforce this with my oldest son, who was dyslexic - they had to hire a teacher JUST FOR HIM. I had to threaten them with going to the news media and suing the school district, to get them to do it. Well, it worked - he graduated a year before his classmates!!! You can fight City Hall (or the school District) and WIN!!

This is WAR and no war was ever won, unless SOMEONE was willing to FIGHT. We MUST win, and we WILL win! I will be curious to learn the response to YOU trying these things!

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Cvsintoronto

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Posts: 3
Reply with quote  #12 
Your daughter is very lucky to have you as her advocate!
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