A pretty discouraging diagnosis

So last weekend I became horribly sick again. You know, less than a month after last time. The anti-nausea medications weren’t doing squat and I was afraid it was going to last forever like last time, I went rushing off to the hospital — the only place that was open over the holiday weekend. And they told me they think I have something called Cyclic Vomiting Syndrome.

As far as I can tell, Cyclic Vomiting Syndrome is the same kind of rubbish diagnosis that New Daily Persistent Headache is: it basically means “you keep puking on a regular basis and we have no idea what’s wrong.”

The doctor said my stomach, kidneys, pancreas, gall bladder, etc., were all “happy as clams.” Yet I keep throwing up and I keep having these spells of throwing up and that’s been happening for years now. I had a scope done five years ago and nothing untoward was discovered.

I saw my family doctor on Tuesday and they think the same thing. They’re trying to figure out what to do about it and I’m feeling very discouraged. They tried to get me to swallow an anti-nausea pill in the office and the mere thought of trying to do so made me puke again. (After puking, I swallowed the pill and kept it down. Go figure.)

I feel much better today, and was able to get some updates in, but the thought of this happening over and over and over and over again is very discouraging.

There are certain unpleasant physical sensations I can sort of put out of my head and carry on with life, but nausea’s not one of them. Furthermore, I am concerned about my medicine. I have to take four pills every morning and four every evening and that’s very important. I need to be able to take those medications and keep them down or, within a few days, I turn into a nervous mess and terrible things start happening. Once, like three years ago, I was throwing up almost every day for a solid month, and as a result could not take my medicine, and by the end of the month I’d slid into a terrible depression and the house was a tip because I was too depressed to clean it and I was a complete wreck as well.

So, I hope there’s something that can prevent this stuff from happening but I’m not optimistic.

On the bright side, I got a lovely email from someone working with the U.S. Marshals who complimented my work. I also had a lovely conversation with a lady who is trying to set up a database for missing Native Americans and wanted to know how it’s done, and I told her all my trade secrets.

21 thoughts on “A pretty discouraging diagnosis

  1. Diamond Lil May 31, 2018 / 7:04 pm

    I am disappointed that none of the doctors you have seen has ever considered prescribing a suppository for the nausea?!

    Western medicine does not appear to work for you.

    I started developing car sickness last year, has happened when I’ve been driving as well as my husband driving me. Not fun trying to safely find a place to pull over to puke.

    No explanation either, as I’ve told me dentist, urologist, gynecologist, eye surgeon…

    Missed a flight last year due to wretching on the drive to the airport. So now I try to keep Dramamine with me at all times.

    Out of the blue sickness is bad, but to me not as horrific when it occurs because of kidney stones, and that one time I was on a ship in the Irish Sea.

    Just keep a bag handy with paper towels, puke sacks, a bottle of water for rinsing.

    • Meaghan May 31, 2018 / 7:14 pm

      Someone advised me that the anti-nausea disc melts, whose taste I cannot tolerate, can be effective when shoved up the lady bits. The person called it “hooching.” 😂

  2. Patrick Kerrigan May 31, 2018 / 8:23 pm

    Have you looked at natural products. There is a guy who served as a corpsman in Vietnam, who has a website that talks about eating better. Also educating people and medical personell about medical issues caused by fungus. Also, it would be interesting to see how others might be dealing with similar problems.

    • Meaghan May 31, 2018 / 8:43 pm

      I haven’t looked at anything yet; my family doctor’s office just confirmed the diagnosis yesterday.

  3. marsyao May 31, 2018 / 9:26 pm

    Cyclic Vomiting Syndrome and New Daily Persistent Headache ! Meaghan, would you mad at me if I burst out laughing while reading this line ? But wish you be well soon

    • Meaghan May 31, 2018 / 9:27 pm

      The headache finally left, albeit long after it wore out its welcome.

  4. Patrick Kerrigan May 31, 2018 / 9:56 pm

    I found that studies have found that CVS is possibly connected with migraine headaches. It might be a form of migraines. Also Coenzyme 10 and L-carnitine has been helpful along with amitriptyline.

    Also there is a CVS Association in Milwaukee. They have a website http://www.cvsaonline.org.

    Also the National Institute of Health has a toll-free number 800-411-1222 for clinical trials.

    All this came from the National Organization for Rare Disorders.

    • Meaghan May 31, 2018 / 9:57 pm

      I had migraine headaches as a kid, from age 7 to 14 or so. I also have a history of migraines in my family; every female on my mom’s side of the family has had them. Plus that horrible Great Headache Crisis which wasn’t a migraine but was a great deal of misery.

    • Meaghan May 31, 2018 / 9:59 pm

      Thanks for all that info, btw, I will check this stuff out. It’s good to know that other people care about me.

      • Pl May 31, 2018 / 11:05 pm

        Hope u get well soon. My granny, a partier back in the day said the cure for an alcohol induced upset stomach was full fat milk or something high in fat. U could tailor this between bouts of nausea, even if u don’t drink.

  5. Shari Salem-Kizziar June 1, 2018 / 7:32 am

    Meaghan, please look into changing your diet. My daughter has Immune Thrombocytopenia (autoimmune disorder that attacks the platelets, so she lives with low platelet count.) Can be risky if injured, so she must stay out of all contact sports, has been hospitalized many times when counts drop very low, etc. But anyway, to my point. We changed her diet to the autoimmune protocol diet. Not suggesting this one for you, but entirely organic and whole foods, no processed. Start juicing every day (get a masticating juicer and some good recipes). You need to heal your body. Get with a functional medicine doctore (holistic) and sip bone broth DAILY. Become a health nut, I am serious. You will see VAST improvements in body and mind. My kiddo? Platelets have climbed to a safe level with no awful drugs, just diet. Best to you.

  6. Ally June 1, 2018 / 2:35 pm

    My sister suffered through several years of the same type of thing. Every couple of weeks went into non stop vomiting episodes with terrible nausea. She ended up in the hospital several times because of it. She had (almost) every test done and they could never find out the reason until recently. She was hospitalized a few months ago and just as they were going to release her another Dr took over the shift and read the results of her ct scan and found out that she had kidney stones. She had a quite a few of them most of which were too large to find their way out. She finally had a answer after years of suffering. It’s crazy to me that it took that long to find out what was causing her symptoms and that after all of the hospital and Dr. visits that no one thought to look to see if she had kidney stones. Just figured I’d share that with you just in case you weren’t checked for kidney stones. I hope you fell better and get some answers soon!

    • Meaghan June 1, 2018 / 5:25 pm

      I know I don’t have kidney stones. I appreciate the kind advice though!

  7. Bella June 2, 2018 / 1:08 am

    M – recent CAT or brain scans? Know a 9 year old non verbal autistic. All of the sudden, CVS. Docs found a benign brain tumor.

    • Meaghan June 2, 2018 / 9:36 am

      I had a some kind of scan in February after I hit my head in the Pizza Hut bathroom. Nothing untoward was discovered.

  8. Siege June 5, 2018 / 5:24 pm

    A friend of mine had something like this, which (after many unpleasant tests and scopes) turned out to be a stress response. She had good luck with a little menthol inhaler sort of thing, as well as very strong ginger drops to help with the nausea.

    I hope you feel better soon — you do amazing and necessary work!

  9. perl June 9, 2018 / 5:08 pm

    Seriously, nausea is the worst. I always say that if I had to only have one medicine (and I’m on a ton of them) I’d choose the Zofran. I can take whatever pain but nausea is a big ol. nope. The Zofran comes in dissolving tablets (but taste horrible) if you haven’t tried that. Sorry you’re having to deal with this!

    • perl June 9, 2018 / 5:11 pm

      Also, do you have anxiolytics around? I’ve found that taking .25 of lorazepam along with the Zofran really helps. I feel panicky when I’m nauseated – something to do with the gut/brain connection, I guess.

      • Meaghan June 9, 2018 / 5:17 pm

        I’ve got like five bottles of Vistaril.

  10. perl June 9, 2018 / 7:07 pm

    I was just reading about it out of curiosity (avoiding cleaning the house) and saw this on medscape “The combination of lorazepam and ondansetron appears to be more effective than ondansetron alone.” I was on to something, I guess! I wonder if a tiny dose of Vistaril (like 12.5 mg) would be helpful? Or if it doesn’t make you too sleepy you could try 25 mg. Just throwing it out there.

    • Meaghan June 9, 2018 / 7:07 pm

      Thanks for the suggestion!

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