Ever Decreasing Appetite And Increasing Nausea. Help?

[LastUnicornLady]

Hey, everyone. Well, one of my first signs of something being wrong was when I started feeling nauseated pretty well 24/7. I hardly ate, felt terrible, and when I did eat, I was convinced I would throw up, even though I never did. I actually wished that I would throw up just so I could feel better.... Anyways, the constant nausea eventually started to lessen, although I would still feel ill after eating, it wasn't as bad.

However, I guess over the last few weeks (give or take- probably give) the nausea has started coming back, and my appetite is dwindling down to nothing. I used to be a pretty big eater, which surprised most people because of how little I was. (And still am.) I would eat a good three meals a day, plus snacks in between. I mean, I really didn't go more than a few hours without at least a snack. And if I didn't eat, I would notice. My stomach would hurt, I'd feel faint/weak. It was bad.

I didn't really notice it at first, but I have definitely started to eat less and less. For instance, today, all I ate was a banana and an apple until dinner, when we went to a Mexican restaurant, and I could only eat one enchilada before feeling super nauseated. At one point in time, I could have eaten both enchiladas plus the rice and beans, and it would have been perfect. I ended up bringing home more than I ate.

And I've also started losing weight. I never really had much, but I've just gotten even smaller over time. I used to top out at about 51.5 kilos (about 114 lbs.). Now, I've dropped down to barely 48 kilos (106 lbs.), though at one point I was as low as 46.5 kilos (103 lbs.) I've tried to do more smoothies, as I've heard that they're easier. And they are! But they're so much work to put together, that I can really only do about one a day since their is so much cutting and assembling. (And I really don't do the store-bought kind.)

Any tips would be much appreciated! I don't know what to do, and this is kind of starting to worry me a bit... Does anyone else have experience with this?

[Racer]

Rice and beans, and enchiladas... good lord!!! I cant imagine that enchiladas (or food with spice, in general) is very good for sensitive stomach!

I currently take zofran for nausea, and it works a little for me, but tends to help many. If you haven't already, I would find a good gastroenterologist. If you are loosing weight, malnutrition might become a concern, something a dr can monitor.

I cant offer much advice, I have been experiencing the same problem for the past 9 months. I have tried every medication available with no luck.

[LastUnicornLady]

Haha! I don't do spicy foods. Period. It was a spinach enchilada with sour cream sauce. Very good, not spicy or greasy... Of all the things on the menu, I thought it was the best choice. I still think it probably was. I mean, I did manage to eat all but one bite of the first enchilada. If it had been greasy or spicy, I probably wouldn't have made it that far... Do you think I should bring up a GI referral at my next doctor's visit? I went to a GI doctor as my first specialist because we thought I had GI issues instead of POTS. They did a few tests, but nothing huge I don't think. Just a stool sample and exam. She was the one who suggested I get checked out for POTS. Is it necessary to see a GI doctor, or would my primary care doctor be able to monitor this? The reason I ask is because we have to pay towards a very high deductible before insurance covers anything, so it gets rather pricey...

[Raisin]

Hi AnaBanana. I have struggled with nausea as well. I do take Zofran which helps me a bit. It seems to help me more when the nausea isn't too severe. I also find it very helpful to stay away from big meals (not a prob when nauseous) and big carbs. I suspect gastro paresis but haven't had the test for this because I can't stand the thought of another Dr. Appt. . Lol I have noticed some folks went gluten free which helped and I am considering this as well. I feel for you!

[Goschi]

Give ginger a try! Either ginger-lemon tea, or actual ginger root, if the tea doesn't work! You will have to get used to the taste of pure ginger root (only try to chew on some small slices!) - for me it helps quite a lot most of the time!

[Freaked]

I have terrible nausea and vomiting sometimes, and for me adrenaline and acid seem to be the cause. What helps me are proton pump inhibitors or benzodiazepines.

[LastUnicornLady]

OK, so... a few more questions everybody! Anyone is welcome to chime in. Do you think it's necessary for me to see a GI doctor about my nausea and weight-loss, or is this something that my other primary POTS doctor can handle? Should I be worried at this point about the weight-loss? If not, at what point should I be worried? Is there anything I can do that will increase my appetite, or is this dependent on my nausea, and so, will fix itself once we take care of the nausea?

[Freaked]

I think at this point you definitely need to go to some doc about it. Really your PCP or POTS doc would be the best person to know if you need to see a gastro.

[LastUnicornLady]

I'll definitely bring it up with my doctor. The only thing is, my next appointment isn't until May. Do I need to talk to him sooner, or is it OK to wait until then? I'm hoping to wait, but is there any reason I need to contact him sooner? At what point (if ever, of course) should I do that? I'm just so lost right now...

[Libby]

My POTS neuro refused to address the nausea issue. She said that it could be anything - gallbladder issue, blockage etc - so she made me go to a gastroenterologist. Which was fine and I don't blame her. He did an upper endoscopy, biopsied for celiacs and H. Pylori and commented on the look of my stomach/esophagus. Honestly, I didn't learn much other than how annoying medical collection agencies can be when they want payment. A delayed gastric emptying study was done, and came out normal. But I was still diagnosed with GP based on symptoms. And then I was told there wasn't a whole lot to be done for me.

None of the drugs offered for GP are great. Most if not all have 'black box warnings' which mean they can come with some serious side effects. IMO, and believe me I really do understand your pain, but I wouldn't use them unless I was seriously in danger of malnutrition or my quality of life was almost nonexistent. The side effects are scary and can be permanent.

I'd really recommend talking to the GE about diet and other ways of managing GP without drugs. I think that going to see a specialist is a good idea, just in case it's something else, but if it turns out that it is GP, there's little that I learned about managing it which couldn't be found with a quick google search.

If you start feeling horrible or if you're concerned for your immediate health and safety, move your appt up. The peace of mind is worth it. But as long as you're still eating some, drinking fine and not experiencing too many other symptoms (and none of them serious), I don't think that waiting a bit for your appointment will be too detrimental. Again, if you're concerned for your health, move it up.

Regarding the smoothies - I don't blame you for not wanting the store bought kind. They're pasteurized and nutrient-less imo (and the opinions of a lot of nutritionists). What I would recommend doing is spending an hour or so prepping a lot of fruit at once. Ziplock baggie everything into individual smoothie sized portions and pop them in the freezer. Frozen fruit = no ice necessary, individual portion sizes eliminate annoying measuring. You'll need to be sure to add in some yogurt or juice to keep it from being just a cup full of frozen fruit mush, but all things considered yum!

[micheller]

My nausea helped get my diagnosis. It started with heartburn and nausea while I was pregnant. My gyno said it would stop after I delivered. Wrong. I seen a GI for 2 years, had many many tests, tried all the meds, 3 surgeries, no relief. He pretty much gave up and sent me to a GI at Froedtert. My first appt he was asking weird questions not related to reflux. He said he suspected pots. My first reaction, since I never heard of pots, was I don't smoke pot! LOL! He sent me for a TTT which was positive. I seen a neurologist there, did some tests, found out I have neuropathy. After trying most of the anti nausea meds with no relief, it's been chalked up to be a nerve issue. My nausea comes in flares. It gets really bad and I won't eat/drink for weeks, yes weeks, I lose a bunch of weight. Other times I eat nonstop for weeks and gain my weight back but my nausea is tolerable unless I leave the house. I don't have a trigger other than food itself. The med that helped the most was domperidone which is for gastroparesis. I was getting it from a local compound pharmacy but they closed. I have to order it online now.

I'm 5' 6" and my average weight before I got sick was 135-140. The lightest I've been was 103 and my drs didn't seem concerned, just said I need to gain which was obvious but how do you do that when food is your enemy? On my good weeks, the most I've weighed is 127. Still not my norm but better. I can't tolerate any foods at all on my bad days but I was told anything easily digested. Smoothies are a great idea. Can you have someone help prep them? Like Libby said, freezing portions makes things easier.

[AshleyPooh]

So I was reading up the other day how certain Adrenal dysfunction disorders are misdiagnosed as dysautonomia, because of the orthostatic symptoms that kick in with both disorders. Have you ever heard of Adrenal Insufficiency? It causes dysautonomia, nausea and weight loss, among other things like anxiety and exhaustion.

Even if that is not anything like what you are dealing with, I will say that since the ncs kicked in, I have had very crazy stomach issues. It seems like my body will suddenly 'trigger' my digestive system randomly, and I'll have to stop everything I'm doing immediately and go deal with it It's bizarre, almost like you hear people with IBS complain about. It really feels like the ncs is doing it though, because I didn't have this issue before.

A GI doc may be a good place to start, but I'd definitely ask your doctor about other things as well.

One clue to Adrenal insufficiency is hyperpigmentation. It causes the skin to darken and ' tan' almost, especially around creases in skin. So if you are becoming abnormally tan these days, I'd take that as a sign to talk to the doc about it. I used to think I had adrenal insufficiency, before i was diagnosed with ncs, but I didn't have the dark skin thing

[Lethargic Smiles]

Here's a bunch of questions/suggestions based on what has helped me.

• Have you seen a GI doctor about this?
• I'd suggest look up gastroparesis and seeing if it sounds like you. People can have it to varying degrees and it can come and go.
• Have you tried digestive enzymes with meals? (I use Source Naturals Daily Essential Enzyme -- very broad spectrum and inexpensive)
• Do you take a probiotic? (I use Ortho Moleculars Ortho Biotic)
• Have you tried ginger? I take ginger after heavy meals or before eating on rough days. I also start each day with a ginger supplement whether I am nauseous or not. Surprisingly, the brand Spring Valley found in Walmart smells more "gingery" and works better for me than more popular/expensive brands.
• How are you doing on staying hydrated and do you have enough sodium in your body to hold on to the fluids you are taking in? Dehydration causes nausea in everyone, but I've noticed since I've gotten sick, that I am really sensitive to even mild dehydration.
• Have you tried diet modifications such as gluten or dairy free? I don't eat gluten, soy, dairy, or egg and rarely eat grains. Each person's "formula" will be different of course and may change over time.

Once I got my nausea/vomitting under control using strong medications, I was able to start managing my GI issues with the aforementioned diet and supplements. The supplements really were not much help when I was throwing up several times a day The medications (Phenegran for nausea/vomiting and Reglan for gastroparesis) got me to a place where I could start managing it with supplements and avoid letting it to get out of hand again. Now I almost never need Phenegran and rarely need Reglan.