Nausea and Gastroenterologists

[cmep37]

Since hearing the word dysautonomia for the first time a fortnight ago I've been reading about it and have realised that my nausea is definitely related.  I was referred to a gastroenterologist and have finally got an appointment (I've been waiting 18 months!).  I think my nausea is 2 separate problems:- 

1) Nausea related to orthostatic issues/POTS.  About 30-45 mins after I eat (and it doesn't have to be a big meal a slice of toast is enough) my heart rate and temp spike unless I'm lying down.  Sitting down even with my feet up isn't enough, my heart rate will still reach 120ish.  Once my heart rate  reaches 120ish I start to retch.  If I don't take Zofran/Ondansetron I'll retch until I'm sick, with the Zofran I don't vomit, just retch.  If I am sick the food is barely digested (sorry to be disgusting).

2) Nausea related to gasroparesis.  I'm never hungry, full after I've eaten a couple of bites, have problem swallowing food or drink (it kind of sticks in my gullet) and about an hour after eating I feel sick.  It's a milder kind of nausea than the first type related to my heart rate, I never retch but I feel very queasy for a couple of hours and it's worse if I eat anything heavy or rich. 

Even to me, this sounds completely ridiculous when I see it written down - after my experience with the cardiologist who told me it was all in my mind I'm reluctant to get another pyschosomatic diagnosis.  Is there anything I can do to make myself seem more convincing?  And does it sound like dysautonomia to you?

 

 

 

[Sam1]

I'm new around here, so take my opinion as you wish.  However, I am working on a PhD now (not in the medical field, but the principles of research apply the same).  What I have learned between my personal health issues and school, is that you should never try to self-diagnose.  Educate yourself on every aspect of the situation that you can, but understand that being informed is not related to a diagnosis, so be cautious when asking others or yourself if they think that certain symptoms can be x, y, or z conditions.

With that said, sometimes I feel like my body just completely stops digesting food.  Those instances are at times precursors to an episode.  I kept a log looking for triggers, but it didn't seem to be associated with any type of food; greasy burgers, pizza, spicy etc.  If I ate smaller meals that helped, but what made a bigger difference was taking digestive enzymes.  A huge difference; I found some good ones that contained enzymes and bile and take them religiously after eating every meal.  They're cheap and seem to help the issues (the specific brand I found works best for me is made by Swanson; the GNC and a few other brands did nothing at all).  The second thing I do is try not to sit upright for extended periods of time after eating.  If at home, I'll recline on the sofa, if at work I'll get up every few minutes and move around a little or use the standing desk.

When the issues started happening I also thought zofran was the only thing that would make the situation tolerable, but imo that stuff isn't good for you to be taking all the time, plus I feel the higher doses may make you drowsy as well.

Hope that helps. 

[Christy_D]

My son's number one complaint is nausea.  It was so bad he had to stop going to school in the 8th grade(he is now 21).  Nausea is still his worst complaint, but not as bad as it used to be because of medication.  He has POTS and MCAS.  His MCAS doctor prescribed him clonazepam.  It has been the most helpful medication for his nausea, and he has tried just about everything.  He was also diagnosed with gastropareisis, but a couple of years later he was retested and no longer had that problem.   Zofran did not help at all for him.

[cmep37]

Sam, it was a very sceptical cardiologist who initially told me my problems were psychosomatic but later agreed that I have a lots of symptoms suggestive of POTS, dysautonomia and joint hypermobility syndrome.  Before that I had a diagnosis of ME/CFS and fibromyalgia and for 13 years I just tried to get on with things thinking there was nothing I could do to help myself beyond pacing, doing whatever light exercise I could manage and making sure my diet was good.  After my appointment with the cardiologist, I tried to talk to my GP about dysautonomia but he said he'd didn't know what it was, never mind know if my symptoms were related to it and after getting him to ask round the other GPs in my practice, none of them are any better. My GP is lovely, and believes there is something physical wrong with me and so I've no desire to change practice given that awareness of dysautonomia in Northern Ireland is very low.  I've been referred to see a rheumatologist who specialises in joint hypermobility and for a TTT but the wheels of the NHS grind very slowly and it could be months before I see anyone or get any results. 

Believe me, I have no desire to take medication I don't need - for years all I have been taking for a list of symptoms as long as my arm is co-codamol for pain.  I could deal with the nausea associated with slow digestion without the Zofran as I've had that for years but without taking it for the nausea associated with my heart rate speeding up I can keep nothing down.  Before my GP prescribed it I had lost 10 pounds in three weeks (my BMI is normally around 19 so I'd fallen into the underweight category) and I was vomiting after just drinking water.  I periodically try to stop taking Zofran to see if I can manage without it but after 2 or 3 days of being sick after every meal I always have to start again. I would love it if it made me drowsy - I have terrible insomnia and sleep problems!

I've been taking probiotics for years but they haven't made any difference to my nausea - excuse my ignorance but are digestive enzymes the same thing?  ChristyDrake thanks for telling me about your son and that he did find medication to help a bit - I've only left the house 4 times in the last 5 months, all of which to attend doctors appointments and I'm getting to the end of my tether... 

[Sam1]

Digestive enzymes are completely different than probiotics.  I also take probiotics on a daily basis; pills in the morning and drinking Kombucha (fermented tea) in the afternoon.  The digestive enzymes actually assist in breaking down the food while they are in your stomach.  Probiotics are the good bacteria that break down and process food even further in your gut.  Think of eating in multiple stages; stage 1 is chewing, stage 2 is churning int mush in your stomach (digestive enzymes), stage 3 extracting the nutrients in your gut (probiotics) - that is a very generic process, don't bash if it's not medically correct lol.  If you decide to try digestive enzymes, look for one that contains bile, that seemed to be the difference for me whether they worked or not.

I also understand your concerns with weight loss, during the worst episode of nausea and brain fog I experienced (was last summer), I dropped around 10 pounds in 3-4  (from 192-182) days and have only gained 3 pounds of that weight back.  I am so glad to have found this site because it was getting to the point where I thought all 10+ doctors and specialists were right and it was in my head.  After tens of thousands of dollars in copays for colonoscopies, endoscopes, invasive EP cardiac studies, cardiac ablations,  an implanted recorder in my chest, tons of ER visits, TTT, a billion blood tests... a singular fresh off the boat resident said that my symptoms matched up with an autonomic issue because of the length of time they lasted not a single one of the specialists ever mentioned it.  And these are all doctors at Vanderbilt University, where they have an outstanding autonomic clinic.

Don't stress about the doctor's knowledge of this topic in your country, we are all going through the same issues that you are.

[Guest KiminOrlando]

I'm in the U.S., so things were slightly easier for me. It did take 15 years to get someone to believe me, but they did a gastric empying study on me once I got the dysautonomia diagnosis. I was told it is common to have gastroparesis with dysautonomia, but not everybody does. I didn't lose weight because of thyroid and other issues, so that is why they didn't believe me. I had pernicious anemia, which I was later told was a symptom,  but again, I don't know if everyone with gastroparesis has that. What I can tell you is that my gastro put me on a med 4 times a day for gastroparesis and it changed my life. It isn't approved in the U.S. so I have to get it specially made. It is approved in the UK. I rarely have to take anti-nausea meds anymore. I'm not sure the rules of the forum allow me to post specific medicine information, so I won't. 

What I will tell you is to eat like you would normally do when you go to take the test, if they order it. If you get sick there, that is fine. It will let them document what is happening. If you have any more questions, please feel free to ask me. I hope you don't have this because there is no cure. I hope it turns out to be something easy to fix, but if you do have it, it can be managed with the right meds.

Good luck.

[Guest ANCY]

I have Dysautonomia and gastroperesis and it is a valid thing to look into if you are having stomach troubles. Mine was diagnosed with a gastric emptying study. GI started me on Domperidone, which works well for me, and also Zofran as needed. Currently waiting for the ok from cardiologist to restart these medications because I had a prolonged QT on an EKG a couple weeks ago and have been off them since.

It has been a struggle, I Currently get 100% of my nutrition through a feeding tube and that has been punctuated by periods of iv nutrition. Hoping to start eating at least a little again if I can get back on the Domperidone.

I have had a GI Dr tell me there are a 1,000 reasons for me to be nauseated, meaning it might not be the gastroperesis every time.

Managing any kind of constipation has been key in getting the best control of my symptoms. 

I hope you are able to find a cause for your problems and get some relief soon!

[Bigskyfam]

I referred myself to a gastro doc. Glad I did. He basically said you have dysautonomia things are going to be difficult with your gi. Whoa. Was nice to hear but to the point and a little sad. Small meals high fiber high protein watch sugars and spice. Water and questioned the Powerade ingredients.

i have slow gi, tachy and flushing after most meals, weird food allergies and the lovely bloating. I take zofran when necessary.

so for now it'll do

[mwise]

I too have gastroparesis, take Domperidone, Tums, 6 small meals that are low fat/fat free, drink smoothies when I can't tolerate meals. I also take a probiotic once a day. It is a work in progress to keep weight on, but as the Dietitian at Cleveland Clinic said you need to make it a 24 hour process to figure what will work for you. I too at one point was looking at a tube feed, but made it a goal to work to eat even if it were a few bites and liquids daily to eating 6 small meals a day. I even manage to eat out now and than with family and friends. Everyone's treatments are different and you have to try different things until you find what works for you. Good luck.

[TCP]

I've had nausea every day for around ten years now. All gut/autonomic related. I have slow motility 'gastroparesis'. Gut has greatly improved on low histamine diet. I'm not so constipated and the nausea not so intense. 

[cmep37]

I saw the gastro yesterday and at least he didn't tell me my symptoms were all psychosomatic.  His main comment was that he was a bowel specialist and that he didn't really know why I'd ended up being referred to him as my issues are more upper GI related.  He's ordered an ultrasound of my abdomen and an endoscopy plus blood tests for celiac and vitamin deficiencies.  He said when all those results of those are back he'll see me again but in the meantime to stick with the Ondansetron since it's keeping me from vomiting. 

[EmD]

I'm sorry the visit with the GI didn't get you many answers, doctors who aren't informed about dysautonomia can be frustrating from my experience. One of my biggest complaint has been the GI symptoms associated with POTS, what I've found to be most helpful is my own trial and error. I've figured out a handful of food I'm able to eat without too much complaint and on my worst days I'll try to have a few bites sporadically through out the day. I imagine everyone is different, but the food I've had success with are; mashed potatoes, meal replacement drinks-orgain is my favorite, refried beans, and rice. As I said it took some trial and error, but I find food that is already soft is easier on my stomach. Additionally I received a tip from someone else with gastroparesis and GI symptoms related to POTS that has really helped so I'll pass it on, try to stay sitting up for an hour after eating and if energy permits go on a like a slow walk around the block. I hope this helps!! Good luck!