Cyclic Vomiting Syndrome Message Board
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kyzar

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Hello, I am a new member.  I read a previous post about bringing paperwork to pamphlets to ER, to assist doctor's in treatment of cycles.  I am not a cannabis user and trying have been dealing with this hell for 5 years.  My questions is regarding ER, I see a wonderful specialist that is quite a drive from my home, but when I get to full blown for days, I must go to ER. I have had half way decent ER trips and horriific ones.  One of those visits, I was on day 6, of pains/projectile vomiting, migraines, and day 3 of getting a few sips of fluid in.  By the time I arrived, I was so weak and nearly passed out. My vitals were 220/200. HR 200.  It took them about 45 minutes to even get an IV in and the doctor sat there, letting me suffer in agony.  He got irritated because I could not talk long enough without vomiting.  After, several hours of fluids, he was discharging me to my families protest because I could not sip anything at that point.  He told me to go home and sip Gatorade. I felt like I was dying and knew the cycle was in full force.  He still sent me home, vomiting and in pain.  Two hours later, my family had to take me back because I was so lethargic, I could not lift my head to vomit and pain was horrid.  The second ER doctor, admitted me and my stay was 6 days, thankfully, the staff put me on a pain pump, fluids, nausea meds etc but I still spent 4 full blown more days in cycle and 2 attempting to rest and come out of it.  I wait so long to go to ER because, they can be so mean and nasty, and this time I waited too long.  The last time I went on say 2 of cycle, ER MD said,, severely dehydrated and did IV fluids, nausea meds and Benadryl. I laid withering in agony between vomiting begging for pain relief.  Because the sound is so loud, (I cannot control how loud it is) and there were only curtains, this other patient was screaming oh my Gosh, shut her up and starting screaming, everytime I vomited.  FOr the pain, Benadryl?  Seriously?  I ended up begging to be sent home after 4 bags of fluids, because I would rather be in agnony in my own bed than surrounded by people screaming at you to stop vomiting.  I could not understand why he would not address my pain, and when I explained I felt like my throat was closing up and I was having trouble breathing, he stated if you can talk you can breathe.  Again, my vitals dangerously high.  Fever rises when I am vomiting, as well.  It has gotten to the point, where I will lay here, feeling half dead before I go to ER because I have treated so poorly.  I found, if they start fluids, with PM, nausea meds, it helps the pain and if I fall asleep, that is the best thing that can happen.  This has been the most debalating  things, I have ever experienced. Pure hell. What do you give ER doctors, or any doctor that can help in the process? Thank you for taking the time to read this and I appreciate any and all information.  Does anyone know why hot baths seem to help? 
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wynnak

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Hot baths can help relieve the stomach pain. People use heating pads etc. some can not tolerate heat. My house is 60 degrees right now and my son is doing so well because of it.. tThe rest of us are freezing [smile]
If it takes you a couple days to need emergency treatment, is there anyway to get your PCP or specialist to help you? That is what we generally do. Our pcp can arrange for fluid and meds at an infusion center. Because we generally have a couple days before things get bad.. or we go to his specialist. They will generally have direct admit orders for him. This may be something you discuss with your Doctor especially if they are sympathetic. We only go to the ER for additional fluids. We use urgent care as well before the ER.
It’s the opioid crisis that is causing ERs to not give pain meds.
My son likes the icy hot patches on his stomach. Not sure how he found that out.. most likely to avoid telling us he was in pain.. but we had some from a shoulder injury he had.. and I guess it sounded good. 😞what he tries to get pain relief.

I also try to contact the patient advocates, or ED department head to talk about my experiences and give them info on CVS. Ask how to avoid that type of treatment, or ways that you can get help when you come in for your condition since you do end up in the ER because of it. There are pamphlets on brochures you can print on the CVSA website under info pack.

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ginny

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The ER Doctor assigned to your case is responsible for the care of a patient with an unknown medical history (to that doctor).  It is an awesome responsibility to have a patient in crisis and not know much about them other than the vitals and what stat blood work will show.

It is possible to meet with the head of the ER department, a patient liaison, a hospital admin, and to agree to formulate a treatment plan for that ER.  This does not mean that every doctor on duty at the time you arrive is going to follow the plan.  If you can have a doctor who is on staff at your local ER, you might have better luck with needed medications.

Some have orders for a home care plan with IV started during a cycle and medications administered.  Some are direct admitted during a cycle and if you can arrange for this you might benefit greatly.

All your medical testing has been completed to rule out other possible conditions? You can review the Empiric Guidelines and the NASPGHAN on the CVSA web page.  NASPGHAN is pedi but the gist is there to help you.  CVSA is running an adult study but publication and acceptance is a year or so away.

Benadryl is a drowsy antihistamine and has anti emetic properties, as do many antihistamines. Not everyone will respond to the antiemetics being used, and the ER staff will usually respect the patient who says "Compazine does not work but Zofran seems to help"-- or something similar.

As you have discovered, sleep is what resets the brain.  My daughters best IV cocktail always involved heavy sedation.  Various antiemetics were used but the only way of stopping the cycle was in sedation.  The typical mix of meds is dosage higher than many doctors are comfortable, Ativan (which can be dissolved at home under the tongue as it has no taste), an anti emetic (Zofran ODT has been helpful because no swallowing is required), and what ever else the doctor feels comfortable with trying at home. The Empiric Guidelines will offer suggestions of meds and at which stage of the cycle to start them.

Some ERs are better at recognizing Abdominal Migraine than they are at understanding the term CVS.  CVS and CHS are now being interchanged so if there is pain involved, you might do better saying you have Abdominal Migraine.

If you are unable to talk, bring a short letter hopefully written by your CVS MD explaining the condition and suggested medications to end the cycle.  Maybe your CVS MD would suggest admitting into a dark quiet hospital room is the preferred treatment.  Your CVS MD could also try to call the ER and discuss your most beneficial treatment plan.

Planning in advance is the only way I know about the prevent some of the horrific ER experiences that seem to happen to many adult patients.

If you do not feel ready to go home from the ER, there is always a hospital administrator on call.  You or your caregiver can insist that this admin be contacted as well as the medical centers attorney and patient liaison.  

On the message board we have read about patients calling rescue from one ER and being transported to another ER where their treatment was better.  I don't know if this is always possible or if health insurance will cover the transport.  

Hot baths also help migraine patients, esp with cold on the head.  This is thought to have to do with blood vessel constriction and dilation.  Hot showers and baths are talked about on the MB.  One member said he is helped by a shower varying between very hot and very cold.  He feels this hot/cold "shocks" his body out of the cycle.





 



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