My appetite has been worse over the last several weeks. I am under a lot of stress (some good) so I know that is making it worse. But I also know it is not just that b/c I have struggled before with loss of appetite when i am not stressed....
Food doesn't taste as good or seem appealing. I don't really get hungry much and have to force myself to eat at times. I'm mildly nauseated occassionally.
I'm curious about anything that might help. Protein shakes have too much sugar and have upset my stomach. Maybe I need to sip on them more gradually throughout the day to prevent GI upset. I've bought some healthier shakes but they taste so awful I can barely stand it. Then I get nervous that I will keep losing weight and am not getting adequate nutrition and of course that makes me more stressed! Normally I really enjoy eating. :(
Also, I am curious about why this happens with POTS.
I have exactly the same problem.
I dont feel hungry, and if I do, nothings appealing. I also have POTS.
Im not "thin", but normal, I think :) but I also keep loosing weight.
Laura, I didn't know it was normal when you have POTS, but it make sense.
Im just eating food with alot of proteins, like cottage chesse(and because I love it).
I don't know if that was helpfull.
Gastroparesis is one of the first culprits they check for when there's not another likely culprit. Have you had a gastric emptying study? (This would have involved eating scrambled eggs with a radioactive tracer in them, usually along with a piece of toast w/jelly and a glass of water, then a series of scans at different time intervals to see the timing of the food emptying from your stomach. The entire test typically takes several hours and would usually done through the radiology or nuclear medicine department at the hospital and frequently would be ordered by a GI specialist, though it might be your dysauto doc that refers you.)
Gastroparesis can cause nausea and loss of appetite. You might want to google around about that and see if that seems to fit the bill, and/or talk to your doc about it. We have several folks here who have it and are being treated for and many more who have at least been tested for it at least once.
As for increasing calories and nutrition when you don't have an appetite (and I'm really feeling guilty giving you advice on this right now, because I'm currently having the same problem and I'm doing a terrible job of this myself ... so in all fairness I admit that this is "do as I say, not as I do" advice):
The key is caloric density. Most likely the volume of food is what triggers you the worst, so the more calorie- and nutrient-dense foods you can get, the better. (I.e., higher calories and nutrients in lower volume/area so you don't feel so full.) Nuts are high in heart-healthy fats (and ooh, you can get SALTY ones ... it's SO hard to get salt in when you're hardly eating, isn't it???) and are thus calorie-dense. The serving size is quite small for most any type of nuts, so those are a good choice. Someone else mentioned cheeses, though the issue there is that cheeses are a great source of nutrients (esp the stuff we women need for bone health!!) and both protein and fat for calories, but unfortunately it's not the heart-healthy kind of fat ... so you've got to mind that trade-off, particularly if you have issues with high cholesterol and/or heart disease yourself or in your family history. Of course there are reduced-fat varieties, but then you're not getting the same caloric benefit anymore.
I haven't tried it (except eating storebought cereals that happen to contain it), but flax seed has been recommended to me; the nutrition info checks out!
With 150 calories/oz, and the ability to "hide" ground flaxseed in other foods (or at least that's what I've been told), it might be a good way to help boost your daily caloric intake. According to NutritionData, it's a "good source" of 3 nutrients, and a "very good source" of 3 other things including dietary fiber (mmmm, fiber!) plus it has those omega-3 and omega-6 fatty acids ... so it's not just empty calories or "bad" fats.
NutritionData also has categorizes foods that are "better choices for weight gain," so you might want to browse through the various sub-categories there:
(There are also trackers for weight and water intake that you can link to from that page if you want to track those as well.)
I hope I've given you at least some info that may help. I am seeing my doctor this coming week and plan on bringing printouts of tracking I've been doing of my calorie intake to share with her to help discuss the problem. I've been tested for gastroparesis in the past, but am not sure if a retest might be in order in case things have changed in this regard. I'd been suspecting that my loss of appetite was related to the pain I've been in of late, but it's just so hard to say. There are times when the pain isn't *SO* bad, and it still feels like eating is a chore, that food is entirely unappetizing, and that if I eat more than what used to be "snack size" amounts to me I feel ill.
Take care of yourself, and keep us updated!!!
Thanks for all the info. I haven't had a gastric emptying test. I'm seeing my primary care dr. Fri. and will talk with her.
When it rains, it pours. I have been dealing with gynecological problems, high HR and BP, loss of appetite, and terrible sleep. It is overwhelming to sort out all this stuff. Thankfully, two of the gynecological issues have been resolved. hurray!
Nuts are one of the things I have found myself able to eat, probably for the reasons you mentioned, Heiferly. I feel full fast so nuts are a good way to get myself to eat without having to eat a large volume of food. I noticed reading about gasoparesis online that low fiber and low fat diets were encouraged. This is tough b/c I am losing weight more than I would like to. And I have constipation so try to eat a lot of fiber. I do eat flax seed on my already high fiber cereal, for the nutritional value and for the calories.
I need to get back to eating frequent small meals. I fell out of the habit, plus when you aren't hungry it's easy to go a long time w/o eating and even forget to eat for a long time!
Yeah, the low fiber recommendation for gastroparesis is tough, because many (most?) of us have low motility when it comes to "further down the line" in the digestive tract (perhaps even moreso than in the stomach) ... constipation is one of the MOST common complaints when it comes to GI woes in dysautonomia ... at least that's my impression, anecdotally speaking. Moreover, it frequently seems to be treatment-resistant constipation, i.e. many of us are taking one or more medications for constipation/IBS-C *and* either fiber supplements or high-fiber diets (or both-oy!) and still may not be completely regular. I swear, if a "normal" person consumed all the fiber, Miralax, Colace, Dulcolax, etc. that we take they'd have ... well ... You know it's bad when you get jealous of someone who has diarrhea with a stomach virus ... :-p
Saw my primary care physician this morning. For now, I am going to focus on eating small frequent meals. The GI dr. I saw at the Cleveland Clinic in summer of 2009 suggested this and I've done it some. But then I find myself forgetting to do this and getting off track. Probably b/c I actually forget to eat!
I know what you mean. I honestly don't feel the slightest twinge of hunger all day until late evening. I drink my fluids, but if my home health aides weren't (helpfully) pestering me to eat ... especially when they do my med reminders, because some of the med times must be done with food ... I really could go most of the day without touching a morsel of food without a care in the world. As it is, most days it's nearly impossible to eat both breakfast and lunch anymore because just eating either makes me so full I don't want any more food for HOURS after that. And they really are small meals (I mean like sometimes 4 water crackers for breakfast ... or a 6 oz diet yogurt for lunch ... it's not like I'm eating something super-filling). Dinnertime is better and I can usually get more like 300-400 calories in for that meal, but I don't know what my doc is going to say. I see her Tuesday.
At least we're all going through this together, right? :-/ Is it affecting your BPs at all? My nurse was here today and she got lower values for both my sitting and standing BPs than what they have been lately, and I'm wondering if this not eating well thing could be partly to blame? I generally don't fare well when my resting (sitting) diastolic dips under 60, so I guess I should be pushing the salt like crazy today. Not hungry for anything I could put it on, though ... tequila shots? (Just kidding ... I'm a non-drinker and am allergic or intolerant to almost all alcoholic drinks ... but that's the one you lick the salt off your wrist for, right?)
I had the gastric emptying test, it was an easy test but awful because I had to fast for the test and it was not until 2 pm so I became dehydrated, I thought for sure it would show I had gastric emptying problems but it was normal, I even felt during the test like the eggs stayed right in the pit of my stomach so go figure. I have lost 40 lbs now since I started feeling poorly, but on the days now that I feel well I try to eat, one thing I have every day is a bowl of split pea soup I mix split peas and barley and some chicken and a can of chicken noodle soup in my slow cooker and eat a bowl a day it gives me the salt and I tolerate it well, I also add olives too it and pickles I know it sounds horrible but I like it and I get lots of salt that way. Otherwise I have no appitite either, but its funny once I start to eat I can eat a bit. But if I don't force myself to eat I can go the whole day without eating. The one thing I am grateful for is that I am not nauseated anymore. I do get a very distended abdomen after eating looks like I am nine months preg. It does go down and another very funny thing for me is I was always constipated before getting sick and now I go to the bathroom 2-3 times a day I don't get that. I think this dysautonomia effects every part of your body at least for me it does ok take care Michelle
Oh, those eggs!! I don't know how I kept them *down* for that silly test! The hardest part for me was going off my anti-vomiting medicine to do the test. Blech. And I'm pretty sure they were powdered eggs or whatever. Yum (not).
Yeah, you brought up an excellent point there: anyone scheduling this test should try to insist on having it done first thing in the morning to reduce the issues of dehydration etc. because we're already so sensitive to those things and trying to do the "empty stomach" thing for long into the day just doesn't go well for us. If they're bent on scheduling you later in the day, let them know you may need IV fluids in the AM to prevent dehydration and syncope and to keep you stable until the time of the test (you and your doc know your body enough to know whether this will be needed).
It is very weird to have no appetite. I was out to eat with a friend and ordered coconut cake, which I love, hoping I would enjoy it. But it was like eating cardboard. It's like my taste buds aren't even working right. All these things I would normally eat too much of (e.g. chocolate!) aren't even appealing..........
off to sip on/force a protein shake as long as I have insomnia.......
I found the exact same thing I used to eat very healthy salads and more salads and I loved chicken now I can't eat any of that I tried to go out too eat the other day at my favorite restaruant which has a hugh salad bar and I could not stomach eating any of it I just sat there. And that was my favorite place too go. Now I find I crave things I have never eaten like the pea soup Gross, I have made so much pea soup I can't believe it and I never ate pea soup before. I can't eat chicken either without cutting it up and putting it in the pea soup it seems like anything I have has too be mixed into the pea soup its crazy. I also can go all day without eating and I was overweight but now I am down 40 lbs and losing more I am actually happy with my weight loss everyone that sees me thinks I look great if only they knew. And the insomnia forget it I can't sleep anymore either.
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