repetitive vomiting and severe weight loss

[MomtoGiuliana]

I think this COULD be related to dysautonomia, so I am posting this in hopes that someone might have some thoughts about where to turn. We have new neighbors--a family--and the mom (in her late 30s) has a mystery illness. For the past year she has been vomiting repeatedly, especially in the AM, every day. She has become pretty weak and is very thin. The only diagnosis she has gotten is anorexia, but both she and her husband are convinced that cannot be correct. She has been evaluated by numerous doctors and I don't know what tests she has had, but what she has had have all come back "normal". They are at their wits' end and she is clearly unwell. I don't know if she also has other symptoms, but it sounded like it *could* be related to dysautonomia. I'd love to give them some ideas to pursue.

Oddly, apparently since they have moved to their new home her nausea and vomiting has gotten somewhat less severe. Her 10-year old son suffers from migraines, and he is also somewhat better.

Thanks for any thoughts!

Katherine

[steph37822]

Hi Katherine, sounds exactly like what I've been dealing with the last 7 years on and off (as long as I've had POTS), and much more frequently the last 11 months. So I hope I can help your neighbor, it sounds to me like she possibly has Cyclic Vomiting Syndrome, info can be found here http://www.cvsaonline.org/index.html

I was finally diagnosed at the end of May, and it was like the clouds parted and the sun started shining again to know that there was a REAL physiological reason why my body continues to make me vomit and why I'm nauseous almost 24 hours a day! I know what it's like to not have answers, and to know there's a reason I feel so sick, but not have a clue why!

Doctors think these episodes are actually abdominal migraines, blood stops going to the stomach for whatever reason. And the fact that you say her son is a migraine sufferer adds to my belief that this is what the problem could be. Also when you say these episodes happen in the mornings, for me they happen during the middle of the night, or right when I wake up. That is a classic sign of CVS, though few doctors recognize it. There is no diagnostic test for CVS, you you just have to meet a knowledgable dr. willing to really listen to the patient, and dismiss all stereotypes. (e.g. since I am so thin to begin with, most doctors automatically assumed I was throwing up on purpose as well ). With the exception of GERD, I had a thorough GI work-up 2 years ago when I started throwing up more frequently, and lost a lot of weight as well, and everything came out normal.

I would highly suggest she get to a headache specialist neurologist. And I would suggest before that appt. she start keeping a diary of her "episodes" as well as a migraine diary, if she also has "classic" migraines. A sample diary can be found on the CVSA site. She should write down when these episodes happen, how long they last, what she does to stop them (if anything) she may be able to identify certain triggers.

There is no cure for CVS, but many people can be controlled by preventative migraine medications. I am trying those medications now. I am also reliant upon Zofran to control my constant nausea. It's been a total Godsend to me.

There is a lot of info on the CVS site, suggestions for how to get through episodes, why they happen in the first place. (and yes, Dr. Grubb told me CVS runs along the lines of dysautonomia, for me already having POTS it's easy to see the connection, hers might be harder to find, if she does have CVS). If she'd ever like to to email me, you can give her my address, I think you have it from dinet photos.

Take Care, good luck to all of you.

-Steph

[MomtoGiuliana]

Steph

Thanks so much for your reply. I printed it and will give it to her. I did forget to mention that her other symptom she said she has is very bad insomnia--which is what also pointed to dysautonomia to me.

I appreciate your offer of your e-mail address for her. I'll give it to her if she wants it after reading your response.

I'll keep you posted on how she is doing and if she gets a diagnosis.

Take Care,

Katherine

[Sunfish]

katherine -

while it sounds like CVS is a very big possibility, particularly with the migraine connection, i at least wanted to throw in a quick mention of gastroparesis too. the morning vomiting tends to be a classic symptom for many with severe gastroparesis also, and when i'm having my worst spells of it my nausea is somewhat constant but tends to be worst in the morning. from new years until may of this year i didn't go more than about 48 hours without getting sick...it was horrible. and i can definitely empathize with having to dispel docs being worried about an eating disorder - but a good doc (!!!) should be able to tell the difference. medical weight loss is SO different than when one is in the midst of an eating disorder. both are serious, but as one who has dealth with both (eating disorder a number of years ago & crazy unwanted weight loss of 35+lbs this past year) there are distinct differences. ggggggggrrrrrrrrrrrrrr. one thing worth mentioning is that a gastric emptying study (for diagnosis of gastroparesis) is not definitive in that one can have a normal study & still have gastroparesis. this can be related to how the study is done, the fact that it doesn't exactly mimic normal eating, and largely that one can have slow emptying to varying degrees at various times and the test may or may not "catch" it.

i also had my GB removed this spring & while it didn't resolve my problems it was step one in helping a bit. and i never had "normal" GB attack symptoms.

re: the insomnia issue, i nad never had a problem - despite years of NCS/POTS - until this spring, after my GB surgery. part of me attributed it to my horrible nutritional status but while it's a wee bit better now it's not entirely. i thought that b/c poor nutrition can make one somewhat hyper while at the same time being exhausting. my sleep was the worst when my GI issues were the worst.

i realize you may not want to overwhelm her, but the email offer is there for me too if your neighbor wants more than one person to run things by. your neighbor is definitely lucky to have moved in next to you!

:-)melissa

[MomtoGiuliana]

Melissa

Thanks so much for your input as well. And your offer of your e-mail address.

She is very grateful for these ideas. I haven't talked to her further--actually my husband brought her the printed responses.

Hopefully these leads will help her.

Thanks a lot--Katherine

[calypso]

Could it be possible that an environmental trigger is making her ill? Did she move from another area or just into a new house in the same city?

I immediately thought of a woman I know who was getting ill from mold inside her home, growing on the insides of the walls where you can't see it. She had mostly respiratory symptoms, but I wonder if it could cause nausea as well or instead.

Of course, it could be dysautonomia, hormone fluctuations or something GI-related. Just thought I'd throw in the mold thing.

Amy

[avais1]

Oh, this poor woman! Her story sounds all too familiar. Before I was dx'd with dysautonomia, I was a frequent nauseated, vomiting, mess. From age 20 to 26, I never made it past 115 pounds, size 0-2, and it was not because I was anorexic. I knew that my GI system was malfunctioning, but every GI test I took came back "normal". All they found was that I had a redundant colon, and that I developed GERD from a small hiatal hernia I developed from vomiting so hard. Finally, I met a wonderful GI doc, who guessed that I may have an autonomic disorder. This put me on the path, and eventually to Dr. Low, and we all know the rest from here.

For me, I get severely nauseated even when I am slightly dehydrated. Also, if I am out in very humid air, even if it is cool, my body has a hard time adjusting the water balance, and here comes nausea. Also, when a person is too thin, they tend to get hypovolemic, which makes the whole picture worse, as we all know .

Anyway, she is lucky she moved in next to you. You are always so good with giving advice and letting people know they are not alone. You have probably saved her sanity already .

[MomtoGiuliana]

Thanks avais and calypso. C--I think you could be on to something there. Her husband told my husband that they did have a mold problem in their previous home. AND, both she and her son have slightly improved since the move (their old house is only about 10 minutes away from the new one.)

Thanks for your concern for her. I hope she can get a proper diagnosis soon too.

Katherine

[OCsunshine]

I apologise that I am responding to a post that was made several weeks ago, but this just sounds SO familiar. I went through a phase (many, many months) where I would wake up severly nauseous and have violent vomitting fits. My one GI doctor told me I was bullemic and I -knew- that was not true. I was not at all concerned about weight, I was trying to NOT throw up every morning! DUH! Anyway, I had an endoscopy done and several other unpleasant tests... turns out they found an ulcer in my stomach. They loaded me up with antacids and stomach meds and all of this gross stuff that made me worse. Once I gave up on it all and stopped all the meds they kept throwing at me, I got immediately better. Go figure. So I am not sure what it was, but I have a feeling the acidic level in my stomach was messed up, PLUS the stress of doctors telling me I had an eating disorder when I knew that wasn't true.

Is she feeling any better? I feel so bad for her....

-Rachel

[JaneEyre9]

Just wanted to add that i went through the mold exposure thing. It is disabling.

If the family moved into a brand new home, they could have some sensitivity to the off-gassing of the building materials. Also, if they moved contaminated things from their old house into the new one, they could be having continued lower-level exposure. Being away from the mold source, will help. Also the mold could have made their existing health problems worse.

She might want to check out the fungal research group.

http://www.fungalresearchgroup.com/

Dr. Johanning from that group was the one who saw me for my mold exposure. It was very eye opening to learn that the toxins from certain molds can set off such horrible health problems. My whole family suffered greatly. We were comforted by learning we were not crazy and that we could get help by living in a healthy environment. Hope your neighbor starts to feel better. She is also welcome to email me with questions.

Kristen

[MomtoGiuliana]

Thanks Rachel and Kristen

I will pass this on to her.

I know she started on a med following the message from Steph and consulting with a doctor. Subsequently she went to Johns Hopkins again for more tests, but I don't know the outcome of that.

Katherine