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abbirose92

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Hi there, 

My name is Abbi. I'm 25 years old, female, and I've struggled with episodes of violent vomiting my entire life (well, 21 years). I'm still having weeks at a time where nothing will stay down, violent illness, and no doctor has been willing to help me. Not sure if others are familiar with responses from GI doctors when there is no actual disease of the GI system. I've had all the tests, with no answers, and now I've been sent home from a week in the hospital with an NJ tube because my weight is so low and I'm still struggling to keep down enough to stay hydrated. 

I'm at my wits end, but refuse to give up until I find an answer!!

Anyone live in California or on the west coast and had success with a particular doctor? Medication? Way to speak to general doctors about this so they don't call you crazy? I was misdiagnosed with anorexia due to my vomiting and fear of eating at age 10, so let's just say that my medical record is stamped with "crazy" and it's hard for me to be taken seriously. 

Any advice, please reach out, feel free to email me! I'd like to gather resources and see what I can do to help myself since no doctor has been willing to really try at this point. 

Sending positive vibes!! 

Abbi 😉

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wynnak

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Reply with quote  #2 
Abbi,

We've been there. Several times. I still worry about what the future holds for my College age son as he transitions to adult care. 

He had an NJ tube as well for very similar reasons. That and he threw up so long and so much for a couple months.. 17 weeks to be exact.. that his stomach had learned to push the food back out.. it "learned" to rotate the other way. So the NJ was to by pass the stomach. I hope that is helpful for you. It literally saved my son.

We live in California. Northern California. 

But there are at least two doctors in Southern California that I know of. (Email cvsa@cvsaonline.org for a list let them know for adult and you location.) Dr. Boles is in Pasadena and I have been  to a lecture where he talked about CVS. I think he tops either very close or before 25. You may check out a post we put on here about him going back into practice. His is private pay.. and I know that isn't an option for everyone. Besides him, there is Dr. Emeran Mayer at UCLA. I know several people that see him as well and are very happy with his treatment.

There is a TON of information on the website. We would take it to the doctors trying to get help.. any help. 

My son goes to UCSF in San Francisco. Dr Boles is a medical advisor for us. There is also Dr. Jaradeh at Stanford. I would think that Dr. Mayer would be the closest to you. Is that a possibility for you? 

Tillisch is another one that I know people have gone to at UCLA, and she has talked about CVS in a youtube video someone took that I saw. We are working on getting her on the referral list. 

The medications are tough as they all work differently for people. Amitriptyline is usually where people start. 

It is not uncommon to have these struggles.. we changed GIs several times and even Neurologists several times. Although we are treated strictly by Neurology now. I should probably mention that Dr Jaradeh is a Neurologist.

Do you currently see GI? Have they tried consulting Neurology?



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abbirose92

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Reply with quote  #3 
Thank you so much for your kind response, and I'm sorry your son has dealt with this as well. 
After four weeks of nonstop vomiting and the placement of an NJ tube, I can finally keep clear fluids down and I am SO grateful. I've seen so many doctors and had many tests done, and now doctors are pretty much referring me to specialists because they say they don't have knowledge about CVS and how to treat it... I've resolved to doing my own research and calling doctors (I did email for doctor resources and am calling doctors in California who are knowledgeable) GI doctors seem to want a problem that they can "fix" and I'm not that... so thinking neuro/GI combo is what is going to need to happen. 
I will call Dr. Mayer and see if I can get an appointment. For now, the NJ is providing me with enough nutrition to survive (bypassing my angry stomach, thank goodness) and I need to get the weight that I've lost in the past four weeks (about 20 lbs) back on. This constant cycle of losing and gaining weight and ending up very underweight has doctors convinced I have an eating disorder, which is not the case. I have gotten used to awful comments from doctors and their refusal to help me and handle it pretty well at this point, thank goodness. 
Tried amytriptaline, and had no success, but have been successful with anti-seizure meds in the past and hoping to try that route again to see if I can stop the cycle. 
I seem to be the only person invested in finding a solution to this and not just a feeding tube to get me out of the way. I am one determined lady. 
I appreciate all your advice and I am going to continue to make phone calls today 😉 


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wynnak

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Reply with quote  #4 
I agree with you on several things there.. We had the same experience. I think you will see that most do. 
Most Doctors like to have a reason that your sick. Be able to see something physical. We felt that once all the tests had been done by GI's.. Then there wasn't much left for them to try. That was when we went to Neurologists.
The neurologist, for us, was the one that combined with Nutrition, opted for the feeding tube. My son is told each time he reaches 7 weeks of vomiting that he will get a tube. Now our team is ahead of the vomiting. They are treating more of the symptoms that the episodes. They literally don't want him getting sick. 

I hope that you can find that with some of the doctors down there. There are some really knowledgeable ones. Let us know how you fair.



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abigaillinda

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Reply with quote  #5 
Hi Abbi,

My almost 20-year-old daughter has suffered with CVS for ten years.  Last summer she saw Dr. Boles who upped her supplements and meds to therapeutic levels.  My daughter is still working through getting to those levels but has not vomited since July.  Hallelujah!  She still experiences nausea and fatigue but has been able to mitigate their intensity (more on that below).

This article was posted on the CVS site, and it has been helpful for her:
http://cvsa.websitetoolbox.com/post/updated-supplement-dosages-9301511

The journey is so hard, Abbi, but once you find a doctor who listens and understands, it becomes do-able.  I hope you find the patient/doctor match that gives you relief from your symptoms and understanding for your mental health (instead of someone always doubting and labeling you as "crazy").  My daughter has also found a functional doctor in our area who helps her implement Dr. Boles's protocols and writes the lab reqs (since we live in NY and he cannot practice here).  

My daughter has also found a nutritionist to help with discovering food triggers and implementing a ketogenic diet which so far seems to be another piece of this complicated puzzle.

Mentioning that, she has found five pieces of the puzzle that work together:  (1) meds at therapeutic levels; (2) supplements at therapeutic levels; (3) hydration (she must drink enough water daily-- and it's a lot-- plus she is also using Propel water which has electrolytes); (4) diet (watching for food triggers and keeping her blood sugar steady); and sleep (restful, refreshing sleep-- which is hard to come by).  She has started using HeartMath to calm her nervous system when she is stressed.  You might look into that.  HeartMath also helps her to get a more restful sleep.

Your protocols may look different, but keep researching until you find what works for you.  {Hugs} 
Linda


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abigaillinda

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Reply with quote  #6 

Oh, one more thing, Abbi.

My daughter tried Amitriptylene with no success when she was younger.  Last year Dr. Boles upped her dose to therapeutic levels.  So don't give up on Amitriptylene. 

That said, be careful though.  I have read on this board that for some people Amitriptylene does weird things.  It's all so individual. 

Just want to encourage you not to give up until you've tried therapeutic levels of meds and not the typical levels most docs prescribe.

In fact, even the doses of supplements my daughter was using were not at therapeutic levels.  So Dr Boles told us what those are (which I can't share here on this site), and my daughter continues to up her supplements and meds until they come within Dr. Boles's guidelines.




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ginny

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Reply with quote  #7 

I think you can now share your doses on this message board.  Wynnart-- correct me if I am wrong?

Also, I posted the dosages of supplements on the Main Forum, and pinned it.  It would be good to know if things have changed.

 


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wynnak

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Reply with quote  #8 
Haven't confirmed that WE can.. but if it isn't you or I. We can encourage them to NOT post them because dosages are different for individuals. My 6'3" kids is not going to take the same dosage as an eight year old. Plus there are things like tapering on meds and even supplements so your body can adjust to them that you are NOT going to be told by people. SO we definitely recommending that you DO NOT share dosages for these reasons. And recommend that you do ask you physician before starting or adding to your supplements because they can have interactions.


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