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Lady_Annabelle

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Reply with quote  #1 
Hi guys. Not sure I'm posting this in the right category..
I'm 38 and in June 2016 I had my first "attack". I woke up feeling very ill and started to vomit. The nausea never left and I got no relief from vomiting. I went to the ER and they they gave me IV fluids and several different anti sickness meds, none of which relived the symptoms. They don't listen. I had several different doctors come to ask me questions. "Where is the pain?" etc etc. There is never any pain. Just the worst nausea imaginable. Sometimes it gets so bad I can't lie still. The thirst is indescribable, doctors and nurses tell me I shouldn't drink any water but the truth is I would rather die than not drink the water. I can get through gallons in an episode, and it all comes straight back up. Usually within seconds. Sometimes I induce vomiting because it gives me some kind of relief, even for a few seconds. Since June 2016 I have had probably more than 15 episodes. Usually it starts early in the morning upon waking and can last from 24 hours to 6 days. Afterwards I feel so weak and exhausted for days. My esophagus is so sore I can't eat much or drink hot fluids. My teeth are breaking at the front due to acid damage. I am a mother to a 3 year old and when I'm sick I have to get a family member to take him. This is never easy. There isn't always someone available and believe me when I say I don't even have the energy to make a phone call. Along with the nausea and vomiting comes pure exhaustion. Even if I've had a full night sleep. Between vomiting I doze in and out of sleep, never for long because I vomit several times an hour. Once I know my son is taken care of, I go into my "zone" and I'm gone.
I am attending a surgical and medical consultant, they have done endoscopy, and colonoscopy, nothing showed apart from damage to my esophagus from the puking. They ask me questions during my appointment and send me home none the wiser. I had gallbladder surgery on Feb 14th (gallstones had been present for several years but had never given me any trouble. I guess they wanted to eliminate them from the equation) incidentally I was well for 5 months after this surgery but in July I had another episode and have had 2 more since. I only go to hospital if it last more than a day or two, for the IV fluids. I am usually left on a stretcher, very uncomfortable and noisy and the worst place to be when you're so ill!
I do smoke weed. I guess I smoke up to a gram a day...and have been for a couple of years now.
Now, to throw a spanner into the works- I JUST FOUND OUT I AM PREGNANT. Dad is working abroad on a 2 year contract, not ending until 2019. (He will hopefully be home for the birth and for holidays (he's a teacher) )
I am so so scared. I am scared morning sickness will turn into episodes. I'm scared of it all. What happens after the baby comes and I get sick? I am trying very hard to quit the weed. I suffer with high functioning anxiety disorder and I guess this doesn't help my situation.
Guys I haven't actually been diagnosed with CVS but I have done so much research it really feels like this is what I have...
I'm not sure what I'm asking of you guys. I guess I am just reaching out for support from people who will actually understand! And tips if you have any...
Thanks for taking the time to read..
Annabelle x
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ginny

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Reply with quote  #2 

That is a lot on your plate.   I guess first things first.  Did you smoke marijuana before the vomiting started?  If so, maybe not smoke to see if the smoking is the cause of the vomiting.  There is a condition called Cannabis Hyperemesis Syndrome and it has symptoms similar to CVS but it is caused somehow by the Cannabis where CVS is a functional disorder.  

You might need help stopping the Cannabis especially if it is helping your anxiety.  Anxiety and CVS are common but so are anxiety and CHS.    

As you know, for the baby health you will need to consult with your OB about what is safe for you to smoke --if any amount is safe.  You might need to have help finding an alternative treatment for the pregnancy that will hopefully continue to help you.

I don't know if any anxiety medication is safe during pregnancy, your OB might be able to prescribe something to help the anxiety.  

Some with CVS have been able to use certain medication for at least part of their pregnancy.

Some do improve during pregnancy.  I hope that is the case for you.  

There is an Irish branch of CVSA that you can locate on the CVSA web page.

If you belong to a church or community organization, you might find some support there for you and your three year old. 

There are some dental hints in the Message Board archives.  I recall being told no tooth brushing right after or during a cycle but it is ok to rinse with warm water.  You don't want to bring the acid into more contact with the teeth.  Please search in the search box topics such as "teeth" and "dental" as well as pregnancy.

If safe for the pregnancy you might have some luck with the supplements CoQ10, LCarnitine and later Vitamin B or additional Riboflavin (B2).

Be sure about the quality of the CoQ10.  Carnitine is available as a prescription, Carnitor.  Vitamin B can be fine but some need additional B2.  I am told all B vitamins can be hard on the stomach so CoQ10 is first introduced.  

I hope you will update us on how you are doing.



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ginny CVSA Moderator
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Lady_Annabelle

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Reply with quote  #3 
Thanks for your reply...
Well I've just been through a 36 hour episode [frown] went to the er as advised by my doctor. I got seen to straight away and got my own cubicle, an upside to this madness I suppose! Anyway as usual nothing relieved me until it decided to pass on its own. I got two shots of Stemetil which I think might have helped for a couple of hours.
I'm so exhausted and just don't know how I'm going to get through the next 9 months and beyond. It's hard having little help and support. I lost my Nan last June 16 also, she was the person closest to me in the world, she raised me from the age of 1 after my father died. So she was in the same hospital as me during those first two episodes, and passed away the day I was discharged. Surreal...
Anyway, I'm rambling. One day at a time folks xx
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ginny

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Reply with quote  #4 
You probably will not be able to have many tests done while pregnant to rule in CVS but I hope you are having the safe tests to be sure you do not have another illness that needs to be treated.

Have you had the opportunity to review any of the other message board posts about pregnancy?

I copied and pasted the updated dosages and suggestions for the supplements on the Main Forum.  Your attending might approve some or all of the supplements.  In particular maybe extra B2 might be of help.  Be sure to check with the attending.

It does sound like you have a good ER.  Sleep is the most important component as it resets the brain.  Would your ER allow you to remain in a quiet dark area so you can get some deep sleep.  I don't know if there is any medication to help sedate you that you can safely take while pregnant but hopefully just the quiet and dark may help you to get the needed sleep.

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ginny CVSA Moderator
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Lady_Annabelle

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Reply with quote  #5 
Ginny thanks so much for your reply.
After my last post I fell ill again and was admitted to hospital. I never felt as bad in my life and wanted to die. Nothing helped and the thirst was so unbearable. I had gnawing cramps under my ribcage that just wouldn't go away. 8 days, my longest episode yet. The good news is I finally spoke out about my addiction to cannabis. I know I have to address that and quit in order to at least rule that out as the problem. I truly hope that it is! So I'm clean now for 5 days and feeling positive. The morning sickness is unpleasant, being sick/vomiting has become the bane of my life. I feel so much empathy for all of you who suffer with this debilitating condition and hope and pray that what I have is CHS and not CVS. I guess time will be the answer... I still feel so thirsty and am drinking gallons of water daily. I don't know if this is a side effect from quitting or that I'm genuinely psychologically damaged from the effects of dehydration and am drinking like a maniac to get past that. The thirst is the worst. Dry mouth from puking and being unable to hold down any water. It's very upsetting. Nobody could understand unless they'd been through it I'm sure!
Stay strong! xx
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ginny

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Reply with quote  #6 
I hope you are getting over CHS and not dealing with CVS, too.  Please let us know.


I have heard about the thirst for many, especially adults, during a cycle.  What I don't know is anything about CHS and the thirst.

I wish you the best in your quest for an accurate diagnosis and a successful pregnancy.

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ginny CVSA Moderator
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Lady_Annabelle

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Reply with quote  #7 
I'm feeling so awful most days. I quit smoking the weed about 5 weeks ago, but have been admitted to hospital 4 times since then for vomiting. They are treating me as if I have hyperemisis. Because I don't have a diagnosis... so I don't know what I have now all I know is I'm so sick of being sick. The episodes are a bit different to before, I don't get the sweats, and it comes on more slowly than before. So maybe I have hyperemisis on top of "the other thing". I feel so helpless because nothing I can take of do seems to help. I'm taking expensive medication for the hyperemisis, Cariban, 2 a day, but still feel so sick all day long, vomiting on and off. It's been over a week since my last bad episode. That's the longest I've stayed out of hospital since this started about 6 weeks ago. I'm not 12 weeks pregnant and no sign of this sickness leaving me. I wish this thread could reach more women who have gone through the same. I wonder were your experiences similar? Will the sickness just continue? Or will it ease off after time? I know nobody can answer that. Only time will tell. I just feel so awful 😭
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wynnak

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Reply with quote  #8 
I don't have CVS. My son does. I will tell you that while I was pregnant, with him, I was sicker than a dog. I was diagnosed with the Hyperemesis Gavardium. They Could not at all stop my vomiting. I slept and puked. That was it. I existed on Dr. Pepper and Salt and vinegar chips. It was all I could keep down. I hated having caffeine during pregnancy.. But it was all that sounded good and relatively stayed in. I always tell my son, who is the CVS sufferer, to eat what his body is craving. It usually has something that he needs vitamin wise. Not that Chips and soda had much.. but it stayed in for the most part. 

What have they tried for the nausea? 

There are CVS sufferers that either struggle with the elevated nausea during pregnancy, or do better. I'm sorry things have been bad for you. Have you reached out to our Ireland support people listed on the international links on the website? Look through the message board as well, comment on older topic threads to see if you can get people talking about it. The site will email people that have commented previously.

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Blynda
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