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Momofhearts

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Reply with quote  #1 
Hi there everyone. I'm pretty new here, but I was hoping for maybe a little support or advice.
I havent been disgnosed by a doctor yet, so please dont yell at me. Part of the problem is that we dont have insurance so we self pay for doctor visits right now. Im looking at all the testing I need to get done and I just burst into tears. I dont know what to do, but I feel quite strongly that I could have CVS.
This is my 4th adult episode now and piecing this together makes so much sense for me. We couldnt figure out why I just keep getting 'food poisoning' but noone else who ate the food did. Or we even thought I was getting contact poisoned by something.
The very worst part of it is the head fog or whatever you want to call it. Im so effing scared when it happens. I refuse to take any medicine during an episode because I feel straight up high out of my mind and anxious and scared that Im dying.
I cant catch up on sleep which I need SO BAD because my husband just doesnt understand. Im responsible for taking care of our kids 24/7, literally. My husband has a stressful job and if I tell him I desperately need sleep he just gets upset and says so does he. With the insomnia accompanying my condition, I just cant sleep with the kids up, nor should I be.
Im scared the kids are going to need me when im in an episode and cant even stand up. My mind is so foggy I keep forgetting important things.
Im usually better in about 2 days, but ive been in a recovery stage for over a week now because im so stressed out. Im hungry but my husband is trying to feed me things like pizza that just make me want to barf looking at them. He probably thinks im faking the whole thing, even though ive read material from this website to him.
I just feel like im dying all week and i am so scared and crying and shaking constantly just thinking "help me, help me, help me"
I asked my husband just for a single hug the other day so i could try to calm down and knoe he cares, but he wouldnt do it.
Please help me
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ginny

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Reply with quote  #2 
Welcome.  No one here will yell at you.  Unfortunately without the testing it is impossible to know if you have CVS or another condition with similar symptoms.  Some of the other conditions are controllable with medication or need surgical intervention.  Is there a community health center where you might be able to establish a medical relationship and find some low cost or no cost help?

Is it possible to attend the Family Conference at the end of this month-- lots of information to be had plus the speed date with a doc could be very helpful for you.

Have you been able to review the information on the CVSAonline web page under the Resources and Research tabs?  

If you have CVS you must get sleep.  Regular pattern of sleep is thought to be important.  If you hd diabetes and did not get your meds, you would go into a diabetic coma.  Your stress and lack of sleep could be triggering the cycles.  Maybe your husband would better understand if you compare these cycles to another chronic condition such as diabetes?

As for what your husband is trying to have you eat, those who have used a dietary approach to CVS have stayed away from prepared foods, some do a Paleo diet, some Mediterranean diet, some gluten free but all seem to be off processed foods.

It must be very difficult to be in a stressful relationship, have small children and have a chronic condition.  You can post here, you can vent, let us know your concerns, no one will judge you or yell at you.  CVSA also has a Facebook page to join, if you are on Facebook you might want to check it out.

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Momofhearts

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Reply with quote  #3 
Ginny,
I appreciate the speedy reply. I've done a little research on low cost health care previously, for my kids, and so i know theres not much close to me.. I would likely have to go downtown and secure childcare while I go. Part of the problem with getting sleep and getting to doctors is that I dont have any reliable childcare, my family cant help and my husbands family mostly lives out of state. I will continue to look, but it overwhelms and stresses me so much to do it. We have been able to self pay for other types of things because we know whats wrong and what we needed. Im so nervous to try and explain to a doctor because 1. Theres no way we can afford to pay for that many tests 2. The doctors that cater to low income communities can be sooo demeaning and are very skeptical of anything. I used to be on medicaid and they just wont take you seriously for anything. As an example once, i almost bled out in an ER because they were "waiting me out" they thought i was drug seeking or something.

I hadnt actually seen the page for the conference yet. I didnt know about it. It looks awesome, its not out of the realm of possibility, i will definitely bring it up with my husband.

I have reviewed many but not all of the information under said tabs. Im continuing to read and learn more. Im so thankful for it. It took me from thinking i was dying from something i would never figure out, to lets make a plan. I stsrted two days ago logging every single food and drink i consume and also my activities all day and how they make me feel. Im ready to do anything and everything to stop these episodes. Im researching a good diet for me. I thought i had a good diet before, but i will follow any diet if it means i can eat food readily again.
I hope if i have all this in hand a doctor can really help me out and take me seriously.

I thank you for your ideas on how to speak to my husband. I like the idea of explaining that sleep is part of my medicine. Im considering if i need to arrange some sort of childcare at night, and give myself a sleep aid at night for a few nights..

There is literally no way to sleep right now.. when my 6 month old is asleep, my 3 yr old will scream and bang on my bedroom door. When they are both asleep my husband expects me to get him things and tend the house. Its so incredibly stressful when i want to fall down and sleep but i cant and i am starting to lash out from the irritability and chronic sleep deprivation.

Thank you so much for the welcome and advice. I really needed to just talk to lose some of the stress since my husband is not there for me right now.
Hes going through his own crisis at work, and i think that he thinks i blame him for the condition, whatever it may be. It frequently strikes after i eat food he has prepared, and the last episode struck on his birthday right when he got home to celebrate. So i know hes feeling bad in his own way, but omg i just need a little encouragement and love right now.
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wynnak

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Reply with quote  #4 
I will also mention that he can call in to the support calls and listen to what others experience. Maybe that will help. We have had parents of adult children call and it has helped them understand.

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ginny

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Reply with quote  #5 

The mention of the birthday -- happy occasions are often a stress trigger.  Two little kids means your hormones have been up and down.  Some do well on birth control as a prevention to the episodes.  The formation of progesterone can make a difference and the progesterone only BC might be one to stay away from.  With a 6 month old, you probably have an OB/Gyn.  Please speak with that doctor, if possible.  This doctor is probably familiar with menstrual cycles with vomiting and possible CVS.

A gyn friend told me that prostaglandin hormone release can trigger vomiting.  She suggested Ibuprofen started around a week before a cycle is expected.  If you are back to periods and not nursing. maybe Ibuprofen might help.

Sleepy antihistamines can be helpful as an antiemetic.  When reviewing the CVSA web page, please print and read the Empiric Guidelines.  This will explain the stages of CVS from the well time, the prodrome (if you have a prodrome, you might be able to pretreat), the actual cycle, then recovery.  Sleep resets the brain so I hope your husband can read this also and better understand.

If possible your doctor could call  CVSA medical advisor and discuss treating you.  I think tests are going to be requested.  On the CVSA web page you can review the NASPHGAN paper.  This paper matches symptoms to suggested tests and possibly you might be better able to target tests that would be helpful and rule out others.  This is a pediatric paper but could be helpful.

I think if you can arrange some sort of help so you can sleep and destress you will benefit.  Do you have a church that might offer some support?  Volunteers might be able to help with night sleep, help to let you rest if you have an impending cycle.

For the diet, try to cut out additives first.  Online you can review the suggested Migraine headache trigger foods to avoid-- this might help as well.  Some say no meat, others eat a lot of meat.  Not everyone will respond to a diet change.

Finally, pay attention to bowel habits.  CVS patients often have rapid gastric emptying when well and then gastric emptying slows as a cycle approaches.  Diarrhea can actually indicate constipation as the liquid stool runs around old dried up stool that is kind of stuck.  Bath Boy is a CVSA member from the UK.  If you can review some of his posts you might get a good idea about how gastric emptying can be a vomiting trigger.

Many of the prevention and treating medication can be constipating so watch out when you are taking meds.  

Let us know how you are doing.  I think calling in to a support meeting as suggested by Wynnak is a great idea.  Maybe both your husband and you could be on the phone together.


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ginny CVSA Moderator
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hope7511

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Reply with quote  #6 
I'm so sorry you are going through this. But we had the insurance problem too.. Where are you from may I ask I may be able to try and help cause I've looked into it all
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Momofhearts

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Reply with quote  #7 
Wynnak and ginny, thank you, you gave me a lot to work on and I feel I am making good progress. Many of the things you mentioned I have tinkered with and found the best solution for me.
Also, I wonder if anyone here has found anemia to have any connection? I started taking an iron supplement and it has helped immensely..
Hope7511, Thank you so much for your concern. Denver, Colorado area.
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wynnak

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Reply with quote  #8 
There was mention at the conference that a good portion of people attending were anemic.. Noted by a functional doctor. I believe that it falls under the autonomic dysfunction if I remember correctly.. But I wouldn't quote me. Can be tied to POTS and other conditions that can be comorbid conditions associated with CVS. The doctors that spoke mentioned that addressing a lot of the comorbid conditions would help to regulate and stabilize CVS. 

Again, this maybe in the Conference write up in the Member newsletter. I suggest that highly. 


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