Appetite Issues With Dysautonomia?

[rmlyonsfamily]

These questions keep popping in my head as I watch K go through this struggle... so please bear with me!

Is it normal to completely lose the desire to eat with Dysautonomia? Since her collapse on April 12th, she has gone from 118 pounds to 103 pounds and really doesn't want to eat. I feel like it's a daily struggle making her put something in her. She says she is hungry, then after 2 or 3 bites she feels full and if she keeps trying to eat she gets nauseous.

[caroline]

This describes my situation exactly. I am absolutely never hungry and have lost a great deal of weight. I eat frequent small meals but i dont really want any of them.

[Jlynn]

thats how I am too.. usually after I eat a few bites I am full, but I try to make myself eat 6 small meals a day just to keep my bp up

[icesktr189]

I have that problem from gasterpariesis... sorry so short on my phone :]

[lgtaylor100]

I had the same issue with appetite for six months and lost about twenty pounds. Then my weight was stable for about six months and now I am gaining. I guess it can go either way with dysautonomia.

[Sarah4444]

I had really severe nausea until I started taking Zantac and Gastrocrom for MCAD. For me it's still hard to eat earlier in the day but I am hungrier and eat more as the day goes on. I wonder if she might be able to eat a high calorie smoothie or something in the evenings?

[enko]

I have the same problem - I'm or not feeling hungry and force myself to eat, or I'm hungry and can't eat after few bites..

[bmahaney214]

I have this problem too. My docotr perscibed me a medicine, that although wasn't created to treat this, one of the side affects helps. I can't recall the name of it at the moment but will reply again later with the information

[Lenna]

My son takes periactin to stimulate appetite, and he takes domperidone to help with nausea. Both meds have been very beneficial to him.

[lgtaylor100]

I have a better appetite in the evening? Does anyone else experience this? Late at night I am really hungry and I guess that is why I am gaining weight now. Up until 6 p.m. or so I have no appetite.

[enko]

lgail,

yes, I have that too And I can't sleep if I'm hungry so I have to get up and eat something Although, I don't get any weight no matter how much late I eat..

[sue1234]

I don't get hungry very often, but then again I eat a small "meal" every two hours for my hypoglycemia. When I had to fast in the hospital for 3 days last year, I became off/on ravenously hungry, but easily made it through the 3 days.

[songcanary]

I usually have a better appetite in the afternoon, too. So I've pretty much stopped freaking out if I'm not too hungry in the morning. I can usually make up for it later.

When I was at my sickest, my rheumy started me on doxepin and it really helped increase my appetite. It's a known side effect.

Lately I have had two relapses, each lasting about two days, and my appetite went right out the window during both of them. I think I have the world's highest sympathetic overdrive

[janiedelite]

Does she eat lying down? How about small meals or high calorie drinks (Carnation Instant Breakfast in whole milk)? Has she seen a gastroenterologist? I only ask this because domperidone really helped my nausea related to eating.

[rmlyonsfamily]

She and I have been out of town for a funeral the last few days - so I have been with her 100% of the time and watching everything she eats... I have no idea how she is surviving!!

Friday:

2 granola bars

1/8 bottle of diet pepsi

1/8 bottle of water

1/4 plate of chicken dumplings from Cracker Barrel

The crust off the biscuit

1 chicken strip later for inner

the skin off a 2nd chicken strip

1/4 bottle of water

and 1/2 of a snack size blizzard

Saturday:

1/4 cup grapes

2 pieces of pineapple

Crust off 2 biscuits

1/8 glass of water

about a cup of a lettuce salad with carrots in it

1/3 cup of berries

Grilled cheese sandwich (that I forced her to eat)

1/8 glass of water

Sunday:

Granola bar

1/8 bottle of water

4 chicken nuggets at Wendy's (yeahhh!!!!)

1/8 bottle of water

Reece cup

1/8 bottle of diet pepsi

About 1/4 cup of shredded chicken

About 1/2 cup of Augratin potatoes

THAT'S IT! I've been letting her eat in small amounts throughout the day, but when I see it all written down it's hardly anything. We have an emergency cardiology appt tomorrow (I'll post another thread for that) and I absolutely plan on asking about this.

[bmahaney214]

I take mestinon. It's meant to Improve muscle strength in patients with certain muscle diseases. It works by preventing the breakdown of a certian substance, acetylcholine, which is needed for normal muscle function.

That's all off the paper that comes with the medicine haha

I just take it to help me eat and have regular digestion. My cardiologist actually perscibed it for me. I, like your daughter, am a teenager. I was eating small amounts like her, just picking at my food. Now I have been eating more and actually getting hungry! The past week I've gone back to picking at my food, but don't know why this is.

Also make sure your daughter drinks more. I drink usually around 90 oz a day and take 1gm salt tablets twice a day.

I think the fluids and salt are to keep up blood volume, I'm not sure, but I know the doctors keep pushing the fact that I need to do this each day.

I hope your appointment goes well! Tell your daughter we're all hoping she feels better. Best of luck -Brynne

[potsgirl]

Looking at her diet, I would think that she would be very dehydrated! Also, it seems her diet is lacking in fruits/veggies and protein. I know, however, that when I really have trouble eating, that whatever I eat (Pot-Tarts, lots of bread), it's at least something. Let us know what the doctor says. I lost about 5 pounds eating the exact same diet plan I had been on before, try to exercise 3 times a week (is she capable of exercise? That might help her appetite).

Hope you figure something out! Thinking of you and Kayber.

[janiedelite]

Something I could tolerate when I was very sick with POTS was popsicles. Just a thought? You could make them with fruit juice or pedialyte?

[Rachel]

Has your daughter been tested for gastroparesis? This could explain the feeling full quickly. If she has gastroparesis a liquid/soft foods diet would help.

There are also some who are sensitive to milk protein. Eliminating all dairy from her diet (milk, yogurt, butter, whey, casein, etc.) could help to increase her appetite. Dr. Rowe at Johns Hopkins recommends at least a one month dairy free trial for his patients who have dysautonomia and gastrointestinal symptoms.

I hope you can find something to help her.

Rachel

[hilbiligrl]

Hey all. I have severe nausea with some vomiting around the clock. I normally, do not have an appetite.... either im too sick to my stomach, or everything i look at makes my stomach even more nauseous. I dont even like to drink fluids either.... when i do, i throw it right back up, so i drink small amounts throughout the day of maybe vitamin water (orange).... or if really losing the weight fast, i start up with my wheat grass shakes 3 times a day to help put something in me, as wheat grass does make me feel somewhat a bit better. In any typical month i can lose 10 pounds fast and gain it back fast, back and forth, according to if i have any appetite stimulants. Mostly, i never want to eat or drink..... too sick too. (and no, not depressed at all.... just the illness)

best wishes everyone!

tennille

[gertie]

I don't think I would ever eat if I waited until I got hungry. I have to eat because of hypoglycemia. My appetite was better when I was taking Neurontin.

Is she a diabetic? I'm wondering why she is drinking diet soda? They make my heart arrythmias worse & trigger a migraine but of course everyone doesn't react the same. I wish I knew something that would help her. Hope she gets better soon.

[MomtoGiuliana]

Is she able to drink more? Usually fluids are really important for us to feel our best. I agree with what others have said regarding trying a high calorie milkshake--either store-bought, or make it yourself (obviously eliminating dairy if that is a problem for her).

I would also discourage taking soda which can make your stomach feel full (due to the gas) and also depletes the body of some nutrients.

The other thing about not eating enough can be maintaining appropriate levels of electrolytes. I know my potassium can be on the low side at times (which is apparently not uncommon in POTS patients) but can be corrected if I eat more fruit or other potassium-rich foods.

What foods are high in potassium?

Aside from the aforementioned cantaloupe, potassium rich foods include:

Bananas

Oranges

Apricots

Avocado

Strawberries

Potatoes

Tomatoes

Cucumber

Cabbage

Cauliflower

Chard

Bell pepper

Eggplant

Squash

Crimini mushrooms

Brussels sprouts

Turmeric

Parsley

Spinach

Broccoli

Tuna

Halibut

[rmlyonsfamily]

This week has been a little better. We also got her Ensure and she loves it! She's been drinking it at least once a day. The other switch we made was from water to an all natural white grape juice, she seems to drink that fairly well.

Eating is still an issue... I guess it's one step at a time.

[mwise]

Glad to hear your daughter is able to drink Ensure. The Stoneyfield Yogurt Smoothies are great and taste much better than Ensure. I couldn't drink Ensure because of the high fat content, but fell in love with drinking the Stoneyfield Yogurt Smoothies. Giant Eagle has them. Trader Joes also carries products made by Stoneyfield. Their Yogurt is great too especially the Greek Yogurt. They have a website with their products. Danimals are pretty good too! They are pretty tasty too!

Encourage her to eat small meals. Hopefully with time, she will be able to take in more. I am on Mestinon and Domperidone which helps with motility. I like your daughter would take a few bites and feel full. I drank mostly Stoneyfield Yogurt Smoothies and made my own fruit smoothies because I couldn't eat enough calories. With time and the medications, I drink smoothies on occasion, but have been able to eat several small meals through out the day and evening right up to bed time.

I count my calories which has helped with knowing how much I am taking in. I bought the book by the Calorie King called the Calorie Fat & Carbohydrate Counter. He also has other diet guides & counters for Salt/Sodium, Protein, Caffiene, Fiber, etc....His website is www.CalorieKing.com. It has really helped me know how much I am taking in on a daily basis.

When I first was diagnosed in December 2010 with Dysautonomia, I worked with a Dietician-Beth @ the Cleveland Clinic, who really educated me (provided me with a diet) specific for Gastroparesis and Dysautonomia. She said it well, "You will need to make this a full time job." It has been and still is a full time job for me, but I am enjoying eating even if it is small meals, but some of my favorite foods again and again.

[Libby]

Another thing that might be worth considering is that after you eat, your stomach diverts some blood to help with digestion. I know I've had problems with low blood pressure after eating (post-prandial hypotension). Feeling nauseous and cruddy to begin with, then having your bp drop again can definitely set you off food.

I saw your other post about the July 5th testing. I hope you get all your answers there. It sounds like you have a doc who gets it, which is fantastic.