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Katelynn87

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Okay so last night I posted about going to the ER and it didn't go well. They sent me home with stool softener [frown] They also told me my potassium was a 1.5 and the nurse mentioned that it was life threatening to be that low, but they discharged me anyway. So I had to take matters into my own hands because this is the worst attack I've had in years. I mean I threw up 3 times in front of the doctor and she told me I was constipated UGH! So frustrating. Well I went to Walmart at 2am and was looking thru every isle in the pharmacy section. I grabbed some vitamins and some medicine for a slight headache I was having and then I was wondering if I could find anything for anxiety. I found something called Nerve Tonic made by Hylands. It's an all natural pill that disolves under your tongue and the bottle says even 6 year olds can take it. So it says if you're having some sort of panic onset you can take one every 15 minutes for up to 6 doses. I also grabbed Dramamine. So I went home and took the medicine for my head, took one Dramamine **mg pill and dissolved 2 of the Nerve tonic pills and took a shower. GUYS I DONT KNOW HOW OR WHY, but my stomach pain stopped. I felt so calm and relaxed. My nausea and stomach aching subsided. I was able to sleep for 3 hours and I did wake up with stomach pains so I dissolved 2 of the pills again and I was able to make it thru the night. This morning I woke up and took two again before going drop my son off and I have been okay today. I can feel that I am still in the middle of an attack but I am able to function. I am able to stand in here and type this right now while I am cooking. What are you guys' thoughts? I wanted to share this, didn't know if anyone else has tried these.

 
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wynnak

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Reply with quote  #2 
The Dramamine would have a sedating affect. So most people would find that helpful. I'd like to know that is in the Nerve Tonic. I've used hyland's for colic tablets.. 

Thank you for sharing. Glad your feeling better. Or at least able to function. 

I would contact the patient experience coordinator at the hospital, and share. You get potassium in some of the IV fluid.. But being very low, it could spur other issues. Make them aware.

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Katelynn87

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Reply with quote  #3 
UPDATE: So everything was fine all day today... it's 3am now, I just woke up out of my sleep and threw up so bad and had severe retching for about 15 minutes. Now I am so exhausted and I'm having horrible horrible stomach pains. I get so sad/depressed when I think I find something and it ends up being a fluke. I guess my stomach just didn't feel like throwing up today or last night. But tonight it did [frown]
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ginny

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Reply with quote  #4 

Have you had the testing to rule out other conditions?

Did you have a belly x-ray for constipation or did they feel the stool in your intestines through an abdominal exam?  It is very very common for CVS type symptoms when the patient is constipated or impacted (you might review some posts from BathBoy).

Treat the constipation.  Pressure on the vasovagal nerve can bring on the nausea and vomiting.  The nerve formula from Walmart-- check the ingredients.

For your stomach not feeling like throwing up, the thought is that CVS is a neurological.  There is research online called The Enteric Nervous System: A Second Brain.  The original researcher has been in communication and said that the same neurons that line the brain and can influence migraine headaches, also line the gut.

Most important, if your testing is completed and you are officially diagnosed with CVS, no fasting, regular sleep, doctors orders to take to the ER, maybe arranging for a home health company to come over to start IVs if needed, and getting deep sleep.

Dramamine and many anti emetics are actually antihistamines that happen to help with nausea and vomiting.  Each work on different areas of the brain.  Nothing works for all CVS patients and some need non antihistamines as antiemetics.

Keep reading, review older posts.  If the doctor or nurse says constipation, and you are regular, remember that the adult CVS patient tends to have rapid gastric emptying during well times and delayed gastric emptying as a cycle approaches and often during the cycle.  Some start diarrhea during the cycle.  I don't think I would treat the diarrhea unless the doctor feels that is needed, emptying the bowel completely might ease the nausea.

Let us know how you are?


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Katelynn87

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Reply with quote  #5 
When I went to the ER they didn't do any testing... she asked me questions and I answered them. I am not constipated I've been dealing with this for YEARS. I was diagnosed in Ohio but now live in Florida. Ohio was great to me but here in Florida doctors are very mean and not understanding at all. Actually had a nurse unplug my sisters iphone and tell her "if it's so important to charge your phone, you can leave" and I've never heard of that... but anyways, I have been up all night fighting this pain. My stomach just keeps getting waves of pain. It feels like there is a balloon in my stomach. I really just want some relief. When will this end this is the longest episode I've ever had. I'm used to like a week at a time, this one has been going 3 weeks now. Throwing up every single day.
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wynnak

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Reply with quote  #6 
Are you seeing a doctor outside of the emergency room to help you manage your symptoms? GI, Neuro? They are better at helping you than the emergency room physicians.
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ginny

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Reply with quote  #7 
I agree with Wynnak, there are much better ways to manage the symptoms than the ER.  ER doctors do not have your history, they don't know you, their job is to get the patient stable and out the door.   The GI or near or PCP will run the proper tests or review your past testing from Ohio.  The heat and humidity in Florida might be factoring into your symptoms as well.

The nurse should not have diagnosed constipation without feeling your belly or running an x-ray but remain aware that constipation often occurs when a cycle is nearing or is starting.  Not everyone has a warning of an impending cycle but those who do will have time to prepare.

One of my kids was around 14 years into CVS when she had the exact same symptoms.  Had our doctor not notified the ER to run tests she probably would not have made it.  With the exact same symptoms she had a life threatening medical condition that require transport to a major medical center.  Please stay aware that many conditions have similar symptoms and even though a cycle seems to be another episode of CVS, it could be something different.



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Katelynn87

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Reply with quote  #8 
I have a new PCP here now since I moved. He knows what medications I was on before and he said the medications were not the right medications if I was still having stomach pain. He put me on 2 acid reducing medications and told me to stay away from foods with a lot of acid. I've been going thru this for a while. I know what the episodes are like. I've had my gallbladder removed because they thought it was that, I've had ovarian cysts removed because they thought it was that, I've had endoscopys at least 15+ times in my life. I've had so many unnecessary procedures done that trust me I HATE going to the ER. But when I feel like I can't even lift my head off the pillow except to vomit in the trash can next to the bed and I can't stand up on my legs then that's a problem and I need to be seen right away.

I don't mean to sound too sensitive (which I probably am because I'm in the middle of an episode) but it seems like you guys are telling me the same thing everyone else is telling me, that it's not CVS. And that maybe it's something else. That's very discouraging especially for someone who has been suffering so bad for so long. [frown] it just seems like no one understands what I'm going thru.
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ginny

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Reply with quote  #9 

There is no test to diagnose CVS.  CVS is diagnosed after ruling out other medical conditions.
There are no tests to rule in CVS.


Most who have CVS can find some help keeping a detailed journal not only of foods but barometer changes, hormonal changes, stress levels (stress can be good or bad, or from an illness or allergy).

The adult CVS doctors state that the CVS adult patient has rapid gastric emptying until a cycle is approaching. This is a CVS statement, not referring to other conditions.  CVS is thrust to be neurological based, related to migraines, and a metabolic or mito disorder of energy. 

If your PCP can admit you, you will be sedated and able to reset the brain.  Resting the brain is what Dr. Fleisher discusses in the Empiric Guidelines, and is the way to end the cycle.
 

Speaking to testing is important because CVS resembles & co-exists with other conditions.  If your doctor treats you for CVS and you still cycle,  and does not keep testing then those other conditions can be missed.


The Empiric Guidelines offers not only medication suggestions for each of the 4 CVS stages of a cycle but also suggests the tests to be run during a cycle and outside of a cycle.  The goal of CVS treatment is to prevent the cycles.  

Once out of this cycle you might bring information on the supplements to your doctor.  I pinned Dr. Boles updated information on the Supplements to the main message board forum.  


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wynnak

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Reply with quote  #10 
I’m sorry that you feel like that is what we are saying. I have read through your posts and the responses and I don’t see that. You are not alone in your struggles. This is something that is probably the most frustrating besides dealing with the condition itself. The medical care for CVS patients is awful and only getting worse. That’s why there are posts about dealing with the ER. Avoiding the ER. Getting a doctor that LISTENS is like finding a four leaf clover. That is why we have physician referrals. When you talk to other CVS sufferers, you’ll her the same thing. The Doctors haven’t heard or know how to treat it.. or they want to diagnose you them selves so they start over. It is awful. You do feel alone. That is why CVSA was founded. So I hope you keep trying. This is a complicated condition that is only complicated more by the care or lack of care that we get. I almost lost my son to this at age 13 because we couldn’t get good care. We really had to fight. Push back. Have your PCP put you back in what worked for you. You tired his way and it didn’t work. But does he know that? Have him m change you back. Give him the cvsaonline.org website that he can get information as well. Or reach out to our medical advisors to educate himself.
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rdean

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Reply with quote  #11 
Katelyn, I hope you don't mind my chiming in, but your symptoms sound a lot like my son's.  When he was in the ER, they told us he was constipated and they did a "clean out."  His vomiting stopped for about a week after that, but then it started back up again.  I could not believe that you could get constipated so bad that you would vomit again after only a week.  However, after over a year of intermittent vomiting, I decided to try a magnesium product on my son.  One thing that made his issue tricky was that he actually had diarrhea.  You think how can someone be constipated when they're having diarrhea?  The reason is that it's overflow. The constipation gets hard and liquid has to go around it.  Anyway, my son is TONS better since being on the oxygenated magnesium.  I would have never believed it. I'm not AT ALL saying that you don't have CVS.  I'm just saying that if you have constipation, it could be aggravating or triggering the problem.  Sometimes, my son has intermittent issues that come out of nowhere even when we are doing the right things.  BUT, it is much more rare and he's no longer being homeschooled, etc.  I guess what I'm saying is that treating the constipation was one piece of the puzzle that yielded huge results.  And, it's very easy to try.  Dramamine also helped my son with nausea more than anything.  I found that the children's dose was enough without the fatigue.  X-rays always showed my son's constipation.  However, I will say that the radiologist would always say it didn't seem so severe that he should be vomiting and yet, once we would go home and fix it, he would stop vomiting.  If we could keep him regular, he would be without symptoms for very long stretches. For whatever reason, it doesn't take much back up to trigger him, so we have to be very careful to stay regular.  He never thought he was constipated.  We always thought that there was no way that this was part of the problem.  And yet, treating him for constipation has worked better than any other medicine or treatment we tried.  And we tried an awful lot. 
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