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Alaa

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My name is Alaa, I live in Saudi Arabia and I am 26 year-old female.

During my school and college life, I would sometimes vomit empty saliva liquid in early mornings when I am stressed or with period, however it happens twice and then stops, later on I feel perfectly fine.

The question is;

How my cvs story started?

In 2014, 2 weeks before my graduation ceremony I went to gynecology doctor to ask for contraceptive pills, because I knew the date of my period is on the exact day of the ceremony, and I always get heavy cramps, but this is an important event to me so I thought the pills will be useful. However, the doctor was completely against prescribing the pills & instead she advised me to take voltaren suppository as much as I need for cramps even more than 2 would be fine to lessen the cramps & I'll be perfectly fine, so I followed her advice.(I wish I didn’t[bawl] )

I got my period on rehearsals, a day before the actual ceremony, usually the heavy cramps start on second day, so I took a suppository on the first day and another one on the second day, woke up having heavy cramps, so I took ibuprofen too. 1/2 an hour passed, then I had a killing pain in my stomach with nonstop vomiting, got admitted to hospital on the day of the ceremony (thank God we usually have 2 ceremonies so I attended the next one in 2015), anyway they diagnosed me with pancreatitis although amylase was only high. 

A month later, I got my period, took just 1 ibuprofen pill, had another episode of nonstop vomiting and again got admitted to hospital, with exact same check-ups, ultrasound, CT scan, again thy said pancreatitis, although amylase only high. They said I will be fine. 

Next period I told myself no more pills based on my own conclusion not the doctor’s, so it passed just fine without vomiting. After few months I got a normal cold, then I had to vomit once, but nope vomiting didn't stop till morning, we got tired of hospitals so I stayed home. 

Again few months later, I was preparing myself to get a scholarship from UCLA, so I had to go through exams, stress, and so on, so got another nonstop vomiting episode, this time we changed the hospital, I got admitted for 3 days, again checkups and tests, thy ended up saying it’s just gastritis, oh also I did endoscopy. So they prevented me from eating spicy food or drinking coffee. 

Later episodes became frequent like every month with events or stress or period, so we thought psychiatrist would be useful, I suspected cvs after googling, but she said am perfectly fine am just anxious because of the previous episodes I had so I expect them coming & thy come, any way she said just take half pill of chlorpromazine. 

Now it's 2015, unfortunately cvs affected my performance so I didn't get the scholarship, so I applied for a teaching job, I started the job perfectly fine cuz chlorpromazine somehow worked, however every time am stressed or I am on my period episodes will come back, not as frequent as before, but sometimes every month, maybe every 3 months, even half a year passed without an episode so I thought the curse finally broke and I travelled by the end of 2016 for vacation all that time I was fine. On vacation I got my period & again episode of nonstop vomiting started.  

The episode would start usually at dawn & ends either 10 pm or continues till 3 am. I vomit like 5 or 6 times an hour, I feel dizzy, sensitive to light & noise, after the frequent admissions & after I was sure that I have cvs based on my own diagnosis after lots of research, we decided only I need to go to emergency room, in the room none of the medications help except when we ordered them to prescribe IV ondansetron + lorazepam and they would prescribe it during the attack with struggle for hours to get approval from the doctor in charge, because lorazepam or any sedative here is not allowed only in rare cases. Even antihistamine thy would still question it, and won't allow me to take it, however vomit will immediately stop after lorazepam + Ondansetron, I wake up perfectly fine, with normal appetite, most of the times when thy delay providing me the medicine I get spasms (claw hands). 

In 2017 I resigned, I was so tired of the fact that I have to be absent every time I am stressed or on my period, besides teaching is not my goal in life, problems happened in work and my best colleagues also resigned, so currently I am unemployed freelancer.

Anyway, by end of 2017 episodes will only occur monthly with period, however they prevented lorazepam to be ordered in emergency room, they said I asked for it every month and I am a drug seeker and it’s not allowed from ministry of health. So I went to polyclinic, just to take antihistamine with normal Saline, before it made me a bit sleepy & helped a little.

however last time I got my last episode of vomiting again with period 3 days ago, the antihistamine didn't work at all, I was so tired, so sick, vomit lasts for 20 to 24 hours with period every month, there must be a solution out there. I had enough of this frequent vomiting episodes even chlorpromazine earlier to period cramps won't work, nothing seems to work, I need a doctor who can understand my case & help me & provide me proper medications & treatment. None of the doctors here gynecologist, gastroenterologist or psychiatrist ever heard of cvs or willing to search about it. 

I know I wrote a lot, and I might sound whining, but I am glad I found this forum to at least share it with people who are going through the same suffering even if oceans between us, we are still humans who share a lot of things at the end. I would really appreciate medical suggestions, or just comforting comments if you share any of what I wrote above. I know I should find a forum, an association, or doctors here in Saudi Arabia who know about cvs, but I did plenty of research, went to plenty of check-ups, they have no knowledge of this here, and after all, medicine is not as advanced as US.

 

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ginny

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Reply with quote  #2 

Hi Alaa, welcome to the CVSA Message Board.  I am one of the volunteer moderators, mom of a daughter who is in remission from CVS and I am not a medical professional.  I am so sorry you are having such a terrible time.

It has to be especially tough when your home country does not allow you to continue treatments that have helped in the past.  Do you think that you could try again for the BC medication? Menstruation is often mentioned as female episode trigger.

One of my daughters doctors felt that Ibuprofen started around 5 or so days prior to her period would decrease the production of prostaglandins and therefore help to prevent or lessen menstrual related episodes.  You don't seem to benefit from an NSAID.  If your doctor agrees, do you think this might help you to try during the days leading to your period?

Anxiety and stress as well as just about anything else that is life related can be triggers. Try googling Fiona McRonald, Phd / David Fleisher, MD for her paper on Anticipatory Vomiting. Hopefully this link will work:
https://bmcpediatr.biomedcentral.com/articles/10.1186/1471-2431-5-3 

If you review the CVSA web page you might find some of the information helpful.  Your doctor can also request a professional packet of information from CVSA-- email to CVSA@cvsaonline.org
You can request a patient packet.   Your doctor could call one of the CVSA Medical Advisors for some guidance and help create a care plan to hopefully prevent the cycles or lessen them and for care during the cycles.

In the US, adult patients also report the emergency department staff accusing them of being drug seekers.  It is natural to request the medications you know work for you.   It can be helpful -unfortunately- to not use medication names but to state your symptoms.

When my daughter was in graduate school I told the ER of her teaching hospital the medication combination that worked for her.  

Please review the supplements as posted and pinned to the message board Main Forum. If you and your doctor approve, these could be of some help for you.  

There are several members who report dietary changes have helped them.  The one thing these changes involve is clean eating-- no additives, no prepared foods.  Some have good luck with the Paleo diet, some gluten free, some are vegetarians, etc.

There is a daily journal on the web site and a cycle journal as well.  These might help you track things, are something to show your doctor, and might help you find a pattern that includes your menstrual cycle but also maybe other triggers.

I hope some of this information might be of some help.  Please let us know how you are doing.




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ginny CVSA Moderator
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Alaa

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Reply with quote  #3 
Ms. Ginny,

Thank you so much for your reply, it is definitely useful.

I really appreciate your volunteering effort[smile]

The BC pills I am scared of its side effects and I am not sure which type will be useful. 

I will try and go back to my doctor and explain again, with the information provided, hopefully this time I find a good listener instead of an accuser. 








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wynnak

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Reply with quote  #4 
Some of the pills due have side effects that are not pleasant. But, on the off chance that it could help your episodes...we always weighed pros and cons when looking at new meds for my son. 

Share the CVSA site and info with your provider. They maybe willing to reach out and get assistance. Or another option, would be to look for another provider that may be morte willing to work with you.

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Alaa

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Reply with quote  #5 
I went back to the doctor, he was willing to listen, however he said period is natural; you should not be scared of it and come up with things like CVS, because vomiting is not a disorder its just a normal reaction to cramps. 
I was like "but vomiting should stop after IV fluids and ondansetron, not lasts for 24 hours." 
he was like "you will be okay don't worry, just take proton pump inhibitor daily before meals, panadol and buscopan 4 days prior to period." 

I told him about q10 supplement, he said yes you can take it, its useful, also I asked him to prescribe ondansetron with diphenhydramine if I had an ER visit next month (period) (hopefully I don't), he said if it was during his working hours he will prescribe it. 

I started the q10 supplement. (hope it works or at least lessen episode hours)

I came across supplements posts, some were talking about periactin that it worked very well with children, will it be useful to adults, especially someone who's underweight like me, I weigh 97 Ibs and my height is 5.3

I will be waiting for your informative responses! and I will be glad to hear from those who share similar things to my experience. 

Thank you!

Alaa
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ginny

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Reply with quote  #6 
Pericatin is usually prescribed as a prevention medication for young children and in the US, it is a prescription.  As is diphenhydramine(Benadryl in the US), Periactin is an antihiistme with side effects that help some with vomiting.  Dramamine is another antihistamine commonly used to help with motion illness.

Zofran, ondasetron, is helpful for some to stop vomiting, for some it can prolong nausea and for others it might not help.  Everyone is different.

If you try coQ10, please read up on it on the message board and CVSA web page.  At the least please purchase a natural product and best if you can manage a pharmaceutical grade product.
You might also want to add in the other supplements.

Some do have nausea and vomiting and diarrhea with their periods but extreme vomiting is (from my experience) not the norm.

Maybe your doctor can leave notes in the ER to call him when you need to be seen, give you a copy of the same note?  And leave instructions for treating you even if he is not available.  There should be a covering doctor who your own doctor can speak with and instruct.  

We cannot tell you the dose to take on supplements but basically I think you are probably going to take the average adult dose as stated on the CVSA message board (dosages are posted) and on the CVSA Web Page.  



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ginny CVSA Moderator
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Alaa

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Reply with quote  #7 
Thank you Ms. Ginny for your reply. 

Yesterday, I had another episode not with period this time, its been a year now since I had an episode with triggers other than period. I had it because of sore throat, at night I felt the sore throat, I took cold medicine, and it didn't cross my mind that vomiting might occur. I woke up in the morning and my throat was painful with phlegm, so I had to vomit the phlegm (sorry gross details). Then, I went to bed again, felt sleepy and tired, but the vomit made me think oh god am I having another episode? I was like please don't think about it, or it will come, and the monster was released unfortunately. However, it was way too mild, no painful bile or stomach acid feeling. So, my sister told me, since you are not too weak as usual, instead of going to emergency room let's try and abort the episode here at home. I tried to take a bath and she let the water flow on my tummy, so as people said here, bath really helps it lessen the vomiting and prolong the remission time between each vomit. to clarify vomiting started at 10 am and I stayed home till 6 pm, but later I started to feel too weak and dehydrated, so we went to emergency room eventually and vomiting stopped at 2 am, unfortunately we couldn't abort the episode at home. Also, I noticed that when we tried to abort the episode at home, eating gel-o and drinking water is useful in a way that it lessen the vomiting pain or acidic horrible feeling. 

I will be waiting for replies, if you shared similar things to the episode above;
What did you do to relief pain? I was wondering if thinking about vomiting episodes it means its coming, I noticed this always, or thinking about it actually makes it happen, I am so confused, and I would feel controlling if I aborted an episode before it actually happen. yes, I did abort an episode once, using mirtazapine, not sure if it will work every time? the psychiatric doctor prescribed it a year ago for me to gain weight, and said it might help with episodes other than chlorpromazine which stopped to work since last year. I don't take mirtazapine everyday, in fact I only take it every now and then if I had a low appetite, to give a precise time maybe every 1-2 months. 

please share your opinion on this, responses are useful. 

Thank you!
Alaa    
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wynnak

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Reply with quote  #8 
I will comment on the thinking about it brings it on:

First, it's the stress of being worried about it that makes it work.. you don't stop thinking about it.. If it is going to be as awful as the last time, if you can abort it, If the ER will even help you.. It's all stress.. 

We changed our mind set about how to cope with it. The more my son feels in control of a potential episode, the better he does. I do my best to not let him see that I am concerned about it. That whatever happens, we are the ones in control. We have meds an supportive physicians.. so whatever happens.. we will deal with. My son is always concerned about being sick, that he is too much to deal with.. which is more stress.. I joke and tell him that it helped me with my gag factor.. We have had him sitting at the dinner table with his chuck bucket and throwing up.. we just stop ask if he needs anything and keep eating.. does not even remotely phase us anymore.

So for us, the combat was the worry. If you can find ways to work on that.

Viruses, and for us allergies, can be a trigger or type of.. Now that he has a sensitive gag reflex (17 weeks of daily vomiting between 20-40 times a day) the build up of phlegm from a cold (trigger anyway) and heavy allergies can cause him to gag and then start vomiting. So again we try to avoid them..Allergy meds and have become germaphobes.. 😉 

Hope that helps.. 

Ginny, you mentioned that your daughter can tell the difference between a regular stomach bug and an episode.



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Alaa

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Reply with quote  #9 
Thank you for your reply Ms. Blynda, 

of course any response of thoughts, opinions, advises...etc. absolutely useful.

I am wondering if you can control vomiting through thinking, like has it happened before with your son? if phlegm is a trigger, then whenever I got a cold, if I woke up not feeling well, should I not go back to sleep? should I try and spit it till the nauseated feeling stop? or should I take a medicine that has sleeping as a side effect like antihistamine?

well, what I found weird is that yesterday I still had phlegm and I did swallow it while I was asleep, though no nausea or vomiting occurred, it was normal? thank God, but why thou? is it cause I did have an episode my stomach did not triggered, or cause I didn't think about it? or cause it was less painful? I am not sure! 

I am not sure what to do to control the episode and try and abort it before it actually start, cause I do sense it when its about to come. 

I would love to hear your thoughts on that!

Thank you so much!

Alaa


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wynnak

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Reply with quote  #10 
Having phlegm in your stomach CVS or not can increase the Nausea effect. Usually why people feel nauseous with colds etc. It runs down the back of your throat any way. 

For my son, if it has a tendency to make him gag on and increase nausea, he spits it out.. He has issues with cheese now.. just the texture. If it is congealed, he spits it out.. Makes dining out exciting 😉 But, now he can tell that it is congealed and peel it off. But he won't touch it. Pizza.. same thing.. to stringy, grosses him out (due to previously throwing up noodles, its a reminder) too congealed.. won't touch it. So small window. 

My son has a tendency to have allergies, so he takes allergy meds year round to help relieve it. If it is more cold related, he will use a netty pot and medications geared toward reducing mucus. 

If the mucus is something that you wake up with.. You may address it with your doctor, could be candida or yeast overgrowth and that can also be nausteasing and cause side pain. If not some sort of other stomach or intestinal infection. 

People have found that Benadryl or diphenhydramine helps with CVS symptoms, anti-histamine diets if you feel that it is allergy related. But, My son and Ginny's daughter can both tell the difference between a virus and their CVS episodes. Though the cold or virus can trigger them into an episode.  

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