At the end of my rope with nausea, vomiting, and malnutrition.

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There's so much to this situation but I'm just going to stick to what's most relevant (and try not to omit anything in the process). It's extremely hard for me to type or use my voice so I'll be working on this over the course of the day--so if it's a little disjointed that's why. 

So I've had health problems all my life but things got debilitating in 2013. I came home from work nauseous one night, threw up a few times on the way home, and have never had a better day ever since. One thing led to a trillion more and my current major diagnosis list is:



-Pompe/Glycogen Storage Disorder Type II

-Ehlers Danlos Syndrome, hypermobile type

-MCAS mast cell disorder



-Myalgic Encephalomyelitis (like CFS)

-Degenerative Neuromuscular Disease

-Large & Small Fiber Neuropathy

-Hypercapnic Respiratory Failure

-Autoimmune Disease


-Colonic Inertia


-Interstitial Cystitis


-Trigeminal Neuralgia

-CIRS/chronic inflammatory response syndrome


-MFTHR gene mutation and some kind of carbonic anhydrous antibody issue

-Thoracic Outlet Syndrome

(Mental Health:

-Bipolar I


-PTSD and c-PTSD


I've been diagnosed with a lot of other things, smaller by comparison, along the way (chronic migraine, orthostatic hypotension, scoliosis, cervical kyphosis, chiari, bulging discs, foot drop, hearing loss, vision loss, lumbar radiculopathy, craniocervical instability, tachy-brady syndrome, reynaud's, etc. etc.) but those are the big ones. (I'm definitely forgetting a lot but bear with me. :s)

I'm being tested further for more specific details on the neuromuscular and autoimmune diseases, but they know that much so far. 

I'm bedridden and in and out of hospitals a lot. I need a wheelchair to get around because I can't use my legs and constant dislocations make bearing any sort of weight with my legs or arms impossible. I can't even sit up longer than 20 or so minutes without needing to lean on something for support, and then by 30 or so min I'm falling over and unable to stay up any more by any means. All my major and most minor joints are in mechanical braces, my neck needs a hard brace, I need AFOs and multi podus boots for my feet, and I can no longer sit myself up or turn over or really do much on my own. Fine motor skills are also going. 

There's still a lot we don't know or haven't tested for yet but that's so far. 

But on to the post point. 

I'm getting particularly bad with my stomach issues and none of my doctors actually seem very concerned. I'll list what's going on and also what we've tried already so all the answers aren't for nothing--because I've tried A LOT. 

For the last four years I've been nauseous 24/7 but it's gotten progressively worse. It used to be helped enough by zofran 8mg once or twice a day that I could eat two small meals a day but it's only gotten worse and these last few months have entered what feels like really dangerous territory. 

I'm never not nauseous. It's become overpowering and absolutely nothing makes it any better. When I eat or drink any amount, no matter how small or big, it gets astronomically worse starting half an hour after starting to eat and building until peaking around 2-2.5 hrs after the first bite. Sometimes sooner sometimes a little later. I feel full within a couple bites. 

Liquid is actually often a little more nauseating than food, but they're both so severe it doesn't feel like much of a difference in the end at all. I vomit about 60% of the time I eat or drink and 40% of the days I don't. 

I already know I'm gluten and lactose intolerant, so those things haven't been in my diet for years. I also cannot tolerate any artificial dyes, flavors, additives, etc. so everything I eat is all natural, and I react extremely violently to sorbitol, higher fiber foods, and higher fructose foods so I avoid most fruits as well.  

I'm down to eating one tiny thing every few days or sometimes once or twice a week, and drinking a little bit every other day or so. 

On top of the nausea I get frequent stomach pain, constant heartburn, (neither of which surprise me at all), and for some odd reason when I do try to eat or drink it makes me SO. HOT. and dripping with sweat for anywhere from an hour to a few hours after. 

I AM on fentanyl patches and duexis for chronic pain and used to be on a large list of medications and other treatments, but this all started BEFORE I started any of those meds and I've tried going off them to help. I'm actually off just about all my meds minus my patches now because I can't tolerate the water to get them down anymore and most dissolvables have dyes, sorbitol, and/or other allergens/problem ingredients and have just made me sick. 

So far I've tried:

-Zofran, up to 8mg three times a day

Sometimes to stop myself from vomiting I'll take three together and it does stop the vomit but doesn't totally help the nausea. I usually ejd up taking 5-6 a day just to not throw up though and I only get 15 at a time so three or four days and I'm out. 

-Eating small but frequent meals. Didn't work because five minutes into the first meal I'm too sick toneat any more or again for tue rest of the day. Same with small sips of liquid every hour; the first try does me in for the rest of the day. 



-All the compatible OTCs I can get my hands on. Nothing even touches the nausea. 

-I've even tried aromatherapy. 

-Breathing techniques, made impossible by my inability to breathe right or hold/control my breath. 

-CBT and DBT

-Mirtazapine, which I can't say got enough of a run because that was around the time I had to stop my meds--which has made everything else exponentially worse on top so these last few months have been nine times extra nightmarish. 

-Cutting lactose and dairy, gluten, artificial/processed foods, and other irritants 

Psych involvement has been ruled out by my psychiatrist, two therapists, the insurance's psychiatrist, two hospitals' psych teams, and the home health care's social worker, so please don't bring that up. We've EXHAUSTED that possibility. 

I had a gastric emptying test in 2014 and it was fine, as well as two endoscopies and a colonoscopy which didn't give any answers either, but nothing related since then. We tried a barium swallow then too but I just threw it up. But in 2014 things were immensely better than they are now so we want to redo some of those, but ingesting things is a no-go so I don't know how we'd go about any of that. 

We've ruled out:

-Psych causes

-Chron's/Colitis as of 2014

-H Pylori

-Lyme Disease and other infectious diseases


-Cancer as of 2014

-Medication involvement

-Celiac/lactose intolerance and other allergies/intolerances (I have gluten and lactose intolerance and a lot of allergies and intolerances, and cutting all these things did help for a long time, but it's not enough anymore) 


-CO poisoning

I did get c diff in the hospital once but that was well after this started and was cleared up. 

I'm getting nervous that I'm eating and drinking almost nothing and vomiting more frequently than before and nothing is working, or only works very little. And for so long I was dropping lots of weight and I'd bet I still am, but I'm noticing that my stomach looks BIGGER than it has in months. It always distends when I eat but I mean in general, I've just gotten a bit fatter. (Just my stomach and a little bit in my face though; my arms and legs are skinny as ever.) 

I've really been trying to eat a bite of something every day but the last few months and ESPECIALLY the last few weeks, I really can't do it more than once every couple days or so--and EDS has ruined my teeth, so I really am trying to vomit as little as possible because I know that's been making it worse; just last week two of my teeth's fillings have come out (it's not really fillijgs, because they're not cavities--I've actually never had one. I have segere enamel decalcification and I get pits along my gumline that we fill as they come.) 

Note: I've never had a sip of alcohol, never did any drugs including pot, and only smoked for five months in my youth. 

OH, and I'm 21. Had lots of health issues all my life but they really became debilitating starting in 2013 after a fall off my old horse that hasn't been deemed related yet, but I sincerely think occured because of the balance issues and dizziness I was having, not the other way around. I got my job because of my ability to stay on a horse through absolutely anything; there was no reason for me to fall that day when she just stumbled a little bit. 

What do you guys suggest? Once it hits five days without eating and three without drinking I do go to the ER but they keep sending me home because I have an appointment with a new gastro in mid-November. Not sure they could help anyway to be honest. 

I'm just at the end of my rope and if I had the physical capability I'd definitely have killed myself years ago. I honestly wish they'd just give me a GJ already and call it a day, and my own regular nurse keeps telling me to ask about TPN of all things (but I don't want to ruin my liver and I want the option of venting my stomach) but I know those things won't happen without a diagnosis which has been impossible to get! (And I know when it comes to that they'll start with an NG which will be absolite torture as my gag reflex is so hyperactive I gag when I brush my teeth -_-).

I'm just so fed up with everything.. I haven't had a day remotely worth living in the last four years. 

Any suggestions/advice? What happens if they still can't diagnose anything with the new guy in November? What's left to look into? 

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  • Posted

    I would ask to be put on a drip to get nutrients into you.  I wouldn't worry about not getting a diagnosis; worry will make you feel worse. Wait to see what your specialist says in November.  With the number of conditions you have, any one of them could be the cause of your current symptoms.  EDS can cause gut problems on its own.

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    • Posted

      Huh, I didn't see this a few minutes ago when I came tonadd a few details but it says you replied 13 minutes ago. Weird s**t. 

      Yeah, my home healthcare nurse keeps telling me when she makes her weekly visit "you need to be on something while you're working this out because not eating or drinking between now and November isn't an option".......but no one else seems to agree. 

      That's been the issue with so many of the people I've seen while trying to compile a half decent medical team. I live on Long Island where exactly 0 high end doctors or much of any kinds of specialists are so most of my diagnoses have been made far away where I can't follow up with the same teams (Columbia, Children's Hospital in the past, Mayo Clinic, Cleveland Clinic, etc.) and now with so much mobility and travel trouble we can't dream of going far away anymore for a complicted number of reasons. As it is I try to make no more than three appointments a week but I've only been making it to maybe one, and that's 10-45 min away places. 

      I did try Stonybrook but the specialists I've seen from there have all either openly given up or written it off as "in my head" despite the MULTIPLE LETTERS FROM 6+ SPECIALISTS I have in my big 5" medical binder explicitly stating that's not the case. A Stonybrook neurologist even dropped me on the ground after picking me up out of my wheelchair with my dad's help and commanding me to stand because, despite EMG results and no reflexes below tue waist, she thought I was faking--and then refused to help my 60 year old father pick me up off the ground. And three friends from my morility disorder support group had horrific experiences with their GI care, so I'm not even gonna try going to them for that, though when I was 16 I did go to a Stonybrook gastro in her own office who told me to go home and "eat prunes", despite a sorbitol intolerance, and even told me the diarrhea it gives me might solve my problem?? So I have my own experience with them to draw more of a concise conclusion from. I hear they're great with cardiac and cancer, and I will admit their psych ward is like a vacation, but I will not be going back--which leaves the city as my closest venue for more advanced help, but I can't get there as stated above. 

      Like I just said in my own comment to my post, everyone I see now is on the same page thinking it's gastroparesis, which does go hand in hand with so many of my currently diagnosed illnesses, but can you test for that without eating something? 

      I'm definitely trying to cut down my stress as much as possible but when you feel like actual death every day and new symptoms keep popping up, it's hard to keep your head on right, y'know? Especially because traditional stress relief doesn't work for me; I can't do breathing exercises with respiratory failure--it all gives me intense chest pain and slow breathing makes me feel extremely suffocated and dizzy, and then my hands go numb, and it's just a mess, and meditation...I've never had any patience for. It makes me /more/ anxious. In so many treatment places I've been while trying to get a handle on my mental health (including four years in residential school which, thanks to DID and having had a different host at the time, I remember very little of as a whole) they'd often make us do an hour of meditation, whether the particular program did it every day, or once a week, or whatever, and it just makes me anxious, then agitated, which goes to anger, then panic, then dissociation, so it's like...finding things that relax me is so hard. Some stimming aids that autistic people use have proven extremely helpful even though I'm not autistic, so that sort of stuff has been a big help, and I'm really not a very anxious person by nature unless something in particular is triggering it...but the things that do trigger it make me explosive; my anxiety has always presented as anger, violence, and self harm instead of like light headedness, nausea, jittery, heart rate, etc. But now I'm off on a weird tangent. 

      Yeah, it's extremely frustrating when your problems, even after a real diagnosis, are blamed on anxiety or depression because once you answer "are you depressed?" with "of course", at least a lot of the local doctors I've come across, immediately shut their ears and declare that's the issue. But the illness is causing the morbid depression, not the other way around. Who wouldn't be depressed when confined to a bed 24hrs a day, only leaving for appointments that are torturous to get through or frequent hospitalizations? Who wouldn't feel a little bit (or a lot) hopeless losing every single friend and thing they ever enjoyed to disability--and knowing it'll never go away or get much better? When breathing, picking up a glass, sitting upright, talking, and everything in between is an endless struggle I'd think it's natural to have a bit of a mental health response. And every single patient I've ever spoken to agrees, and exactly zero medical professionals outside of mental health do. It's SO frustrating. 

      But yes, all in all, I am keeping my stress to a minimum the best I can. It used to be a lot worse since I used to be extremely emetophobic, but when you throw up five days a week or more you're desensitized pretty damn fast. 

      Sorry for going off and rambling; I don't think so well anymore and I lose my train of thought constantly. Brain fog is a lot worse than people think. I have to constantly check what I've already said and what I'm replying to to stay on track at all. 

      I'm just crossing my fingers I make it to mid November without incident..

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  • Posted

    I don't remember if I mentioned, and I can't find it in my post, but I also have very frequent heartburn, and plenty of colon/intestinal and bladder issues we're still trying to work out. (Even when I'm in the hospital for weeks or months and on constant fluids, I only urinate once every 40-60+ hours and don't feel like I have to at all until it's an emergency. I've tried going on a schedule but nothing happens if I don't feel like I have to go. Bowel movements are the same; once every 7-10 days no matter how much or little I'm eating, odorless, often mucus-y, often clogs the frickin toilet, always breaks skin coming out and a few times recently there's been blood that's browner than the bright red torn-anus blood. Tried fiberous foods and supplements a while ago and all I learned was that any amount of extra fiber (or just particularly fibrous foods) gives me explosive diarrhea all day. But we've come to agree that the constipation is NOT causing the nausea/vomiting as this started two years after the nausea and vomiting did and things that did temporarily improve the intestinal issues did not result in any help with my stomach, so that's been a source of frustration as well. I was a very infrequent urinator all my life though, though it was always once a day, not once every 2-3 days. (My mom has brought up that she once asked me in first grade when I started a new school "how are the bathrooms?" and I replied "I don't know; I don't go during the day." And she replied "but you don't go in the morning before school either.." to which I replied confidently, "Because I go at night before bed!" And her response was "you go ONCE!?" and that's when I learned that that's not normal.....but we never looked into it because of money. And I drank two bottles of water at school or more every day, and drank in the morning, and with every meal at home, so back then it definitely was not dehydration. One of the many mysteries of my childhood that makes a lot more sense now than they did back then. 

    I don't know if any of that is relevant but figured it wouldn't hurt to include. 

    (Also my breath and for some reason my tears always smell like sulfur, so idk what's up with that. It made my old GI insist the issue is gastroparesis, which everyone is telling me now seems most likely especially because of my EDS and possible mitochondrial disease, but the old GES was fine. Maybe now it would be different but if I throw up what I eat how will we be able to test for it. 

    OH and contrast tests are a no-go because of a shellfish allergy so please keep that in mind. (I'm allergic to so many things and intolerant of so much besides; it really limits what I can even try if eating itself weren't an issue. And then the mast cell disorder doubles the problem. Nothing can be easy, it seems.) 

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  • Posted

    Horrible condition! OMG.

    Many things you stated are linked to each other, hEDS sucks greatly when it manifests in other organs, not 'only' joints.

    Since also blood vessels are easier compressed, everything just lax, ligaments inside not holding as they should,


    SMAS and MALS looked at thoroughly and excluded?

    For MALS the best way is a doppler ultrasound of the celiac artery, in expiration supine/standing and inspiration. Don't worry, my daughter couldn't stand either, she just sat fully upright, (yet was not fully supine due to positional induced vomiting). need a doc, who knows what he is doing. 

    We are in Australia and pretty 'stuffed'.

    Technicians -who do not even note the physical position of 'not fully supine' (supine has the higher pressure = velocities, if that was the case)-forwarding the ultrasound pics, this is not good enough for MALS diagnosis. (My daughter had high velocities supine expiratory, above the 200cm/sec cut off, but since oh dear no kink could be seen, dismissed as 'most likely insignificant'. thanks. This teenager has no arteriosclerosis to explain high velocities..... We will fly to Europe.....if we can somehow.)

    Sometimes it is not the blood vessel that is suppressed (and causes vomiting and nausea), it is the same diaphragm  ligament cutting into the coeliac plexus nerves that can cause havoc.

    I am also there now to find a pain specialist or whoever to trial a celiac plexus nerve block, this is diagnostic if it helped symptoms or not. (quite a thing to do, they go from 'back spine' to front stomach area with needle, but one is desperate)

    For MALS and SMAS an MRI with sagittal plane would be great (yet we had an 'abdominal' MRI, but no sagittal plane as the question was 'abdominal pain' and they just look for tumours, volvulus, the big even it came back 'normal', there might be something up. Always depends what indication was.

    On our list is also a head MRI, to see the posterior fossa, where the vomiting center lies. (braces yet don't allow that harmless imaging yet)

    My girl also suffers abdominal continuous cramping pain in one spot (appendix is gone and no ovarian cysts), colonic inertia and has some hyper mobility (some call it hEDS, others refuse to call it that way since only 5/9 Beighton score) and there is nothing that seems to help.

    Her colon is also far too long. Visibly far too long, 'elongated, tortuous'.

    We have looked at a full faecal microbic assessment and found nothing interesting. Yet we add Clostridium butyricum (as no eubacteria were found, which produce butyrate = anti inflammatory) and Lacto LGG and boulardii to our daily regime.

    There are some hEDS supplement regimes and some find them helpful (we didn't).

    We have started 'electrostimulation' therapy for colon stimulation as even a too long colon would be no problem....if it worked (had nuclear transit study, all far too slow)

    (4 electrodes diagonally placed, 45minutes in a certain setting program 4 on that TENS machine) with physiotherapist, who works together with a GI doc. It should tell in ..... 3 months if it worked.

    Other GI docs have given up. "Celiac ruled out, diets tried, sugar breath tests negative, scopes done, appendix out. What do you want? Just keep Movicol up."

    My girl has gastroparesis proven though (milk and egg).

    I am sick of diary free, gluten free, grain free....nothing helped.

    A leaky gut could cause a lot of intolerances. (We seem to have none, fructose and the likes no problem, also in colon biopsies those responding enzymes were all really there in abundance)

    So is there a way to address the gut's health? With probiotics and the likes.

    We have to be low fibre due to gastroparesis, but others don't have to and can add 'probiotics'. ? 

    And oh wonder, one does not get certain colon motility drugs, why not?

    Did you ever get any?

    I plea and plea and nope, never any prucalopride, linaclotide and the likes tried.

    I will not use hydragogues like Senna, bisacodyl and Aloe Vera on a daily basis. They can damage the colon nerves in long term. 

    We do use magnesium citrate and Movicol, but it doesn't cut it.

    and "lucky" you get the Fentanyl patches, we were told to have to stop opioids after few months (that were given after a year of intense pain and missing school) soon and her abdominal pain is so bad without, stopping due to 'effect on brain' or 'getting used to it'....but there seems no other option.

    We can only choose between cholera or the plague.

    I tell that to everyone who says 'omg, your teenager is taking tapendadol'. Yes, and so thankful for it, would actually need it twice a day, not only once, and not because of being used to it, because from the start only covering 10 hours and would have needed more from the start. Sleep become very much impossible for longer than 20min and never relaxing.

    And yes, one didn't get the side effects of the oh so slowing down opioids before taking them.

    Can't stand that argument anymore either. We know if something got worse and yet, there are compensatory anti-opioid constipation effect drugs out there.

    We also take low dose Amitryptiline as an abdominal pain helper (yet, TCA do tend to rather constipate yet again)

    We were recently told to take anti-depressants (SSRI) Fluoxetine, apparently doc thinks it can do something for motility (?), but it is not proven for that off label really if you try to find studies. The placebo just the same.

    In general SSRI could hang more on diarrhoea side and TCA more on constipation side.

    But it is too little evidence to use it for that indication.

    Also with Amitryptiline and Ondansetrone (my girl takes 2x8mg per day, highly expensive, but can't stand nausea otherwise), this is another serotonin effect with SSRI and could get too much.


    No one gives TPN quickly (the vein nutrition), I asked for it often, when nausea vomiting were so bad, that she went on retching after ridding of food and couldn't tolerate any sugar drinks anymore. One has to be passing out before they get it at the ER.....I am so over the ER, that we simply stay at home even she reeks of ketone, try to give her frozen icy poles and electrolyte sticks and water simply to survive the worst days even an into vein hydration, not even nutrition, would be best. So we are back to freezing electrolyte liquids and put a bit of glucose in drinks, if she can't handle any food. It comes and goes in waves re severeness.

    Currently can handle cottage cheese! (actually was THE life saver), milk, apple puree.

    But she tries everything as her appetite is not bad currently...and it comes simply back up.

    We also ordered a full nutritional drink, via UK.

    It's like tube food, but just not administered via tube.

    I asked my GI here if he could allow it (as that company does not sell it in Australia without doc permission, duh), and he said 'just keep veggies and chicken meat up'. Hugh? Not getting it, are you, she lost 10kg (20pounds) in this year, she can't 'just' eat.

    So we self help where we can

    and I can't wait to press all the dismissive docs a final diagnosis into their dismissive faces.

    'just needs more physio'. Have you heard that before?

    Ah btw, there is a good hEDS physiological therapy book and need to work with physio together apparently.

    Living Life to the Fullest with Ehlers-Danlos Syndrome.

    I doubt it will do anything for colonic inertia or nausea...... but for joints.?

    Was NJ tube ever tried or suggested? (prior GJ through skin) An NG makes no sense. Don't let them put a tube into stomach, that rebells, it needs to lie in duodenum or jejunum. We don't need those useless trials when vomiting is an issue already.

    All all the best,

    and yes, we found a lot of info and doc suggestions via other social media. You might want to read and ask away there, too.


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  • Posted

    oh dear, 'moderated', might not get through.

    Send you pm.

    BTW MTHFR depends which mutation (location) and if hetero- or homozygous mutation at that location.

    If you had a

    MTHFR A1298C heterozygot (only one, not both bases different) mutation,

    it would be very common (40% of us) and usually no problem in VitB household.

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