LOSS OF APPETITE

[Amyschi]

Hello.  Has anyone experienced just an extreme loss of appetite when symptomatic?   I am not talking about having discomfort from digestive issues.  I don't have gastroparesis, but do suffer from chronic reflux and dyspepsia.   With that, even if I feel sick, I can continue to eat.  This is like just a general aversion to food, where just the thought of starting to eat is difficult and has to be forced.  I have had this off and on over several years, but this seems more persistent.  I imagine I am much older than most of you, will be turning 65, and this is concerning for something more going on, I know.   But just wondered if anyone has experienced it, and if so, gotten any recommendation or have found something that helps.  It is a real concern, as weight is already low.  Thanks much.

[MikeO]

@Amyschifor what it's worth my gastro treated for SIBO. seems to be a not popular issue but it helped big time for me. may take a few treatments but at least i am eating again.

Good luck.

[RecipeForDisaster]

I never want to eat and don’t feel like I can when I’m not doing well. IV fluids always get me interested in food again - I love to eat, but it is too hard on me when I’m not at my best.

[Sarah Tee]

Yes, when I am symptomatic during the day I have no interest in eating. I don’t feel like I have nausea, but I have read that lack of appetite can be sort of a “pre-nausea” symptom. I find that food doesn’t taste all that great either. I make sure I eat anyway and choose bland things.

My symptoms get better in the evening, and then I find that things taste good again. For instance, vegies, fruit or cheese that seemed bitter or unappetising at lunchtime look and taste good at dinner.

The other factor is that low blood flow to the brain probably affects our appetite and taste buds.

[Amyschi]

12 hours ago, RecipeForDisaster said:

I never want to eat and don’t feel like I can when I’m not doing well. IV fluids always get me interested in food again - I love to eat, but it is too hard on me when I’m not at my best.

Glad the IV fluids help you!  Do you have to go to a center for this after the doctor orders?  I'm wondering if they would order :just: for loss of appetite if your vitals are maybe not severe enough to necessarily warrant it?  I'm more interested in the sensation here - I suffer from digestive upset and it is always hard to eat, but I have always been able to.  But this is more of an "aversion", as I said - just curious if anyone relates to that in specific.  Thank you!

[Amyschi]

11 hours ago, Sarah Tee said:

Yes, when I am symptomatic during the day I have no interest in eating. I don’t feel like I have nausea, but I have read that lack of appetite can be sort of a “pre-nausea” symptom. I find that food doesn’t taste all that great either. I make sure I eat anyway and choose bland things.

My symptoms get better in the evening, and then I find that things taste good again. For instance, vegies, fruit or cheese that seemed bitter or unappetising at lunchtime look and taste good at dinner.

The other factor is that low blood flow to the brain probably affects our appetite and taste buds.

Thanks, Sarah.  Funny, but I notice that too - that symptoms are better toward evening, and then eating seems to be a little easier.  Interesting theory about the low blood flow - that is kind of what I am thinking; whether the appetite itself can be influenced by the ANS and if others have noticed this as being part of dysautonomia?

[Pistol]

@Amyschi I dont feel like eating when symptomatic or in a flare. To me it always feels like I dont have the energy to eat - like if I have to even get something out of the fridge it's too much for me. When my daughter was young this was a problem because I had to make meals but could not sit at the table with my family because I was too exhausted. 

[Sea otter]

@Amyschi yes. I am the same when I am in flare. It's similar like when you have the flu and don't have appetite. Like some people have said, I also have more appetite in the evening when I feel better. And after saline I am hungry like a bear. 

[Sarah Tee]

@Sea otter, your comment gave me a little giggle. I imagined you grabbing salmon from a river with your bare hands, or raiding a bee hive. Or, with your user name, maybe eating all the seafood off a sushi conveyor belt!

[Sea otter]

 @Sarah Tee  I am glad I made you giggle. 😊

[Bergbrow]

I’ve had that aversion to food. I know I’m hungry but by the 1st bite it doesn’t matter savory or sweet, I almost can’t get it down. I try to chew it so small that I can drink it down with water.  I look at my plate and I’m trying to convince myself to eat it.  I just can’t get myself to swallow and sometimes have to take the food out of my mouth.  Aversion is the right word for me too.  I have not figured out why it starts.  This has made my weight drop down by as much as 30lbs (which I need those 30lbs).  It resolves itself usually when I finally get some stabilization of my symptoms.  But, sorry I don’t have an answer for you on how to avoid or resolve.  I’ve not eaten some of my favorite foods which should be the easiest things to eat. 

[RecipeForDisaster]

11 hours ago, Amyschi said:

Glad the IV fluids help you!  Do you have to go to a center for this after the doctor orders?  I'm wondering if they would order :just: for loss of appetite if your vitals are maybe not severe enough to necessarily warrant it?  I'm more interested in the sensation here - I suffer from digestive upset and it is always hard to eat, but I have always been able to.  But this is more of an "aversion", as I said - just curious if anyone relates to that in specific.  Thank you!

I have homecare orders to get fluids whenever I need them. It took a lot of work to get it arranged, but I feel so much better knowing I can get them at home when needed. It wouldn’t just be because I can’t eat, but for a whole slew of problems to include that. Once I did not eat for 5 days, because I didn’t feel like I could, and was waiting until I got hungry. I never did. But I also could barely sit up, talk, etc. in those cases, I am definitely food averse. I can appreciate that something looks good and would taste good, and sometimes I even acknowledge that my body wants food, but I can’t imagine eating it. 

[Sarah Tee]

I hope that the new way of measuring blood volume is going to become available in the next couple of years. One company called Detalo Health has just had its device device certified in Europe.

It just takes a small blood test, breathing in a tiny bit of gas, then another small blood test. About 15 minutes. Then the blood tests need to be analysed, which wouldn’t take long at a hospital lab.

Then we can see when we need IV fluids.

Edited to add: I suspect the new blood volume device will be used in this study in Canada:

https://clinicaltrials.gov/study/NCT05924646?term=blood volume satish raj&rank=3

I know Dr Raj and a researcher from Vanderbilt University used the device in a previous study.

[MikeO]

Well i can say i do not have a very healthy relationship with food and to some degree food adverse as well but there are plenty of reasons for it. this was so bad 2 years ago i would not or only eat once every couple of days which creates it own set of problems (trust me) still need to fuel the body. i was 20 lbs lighter during this time.

Not sure what a IV bag would do for me as every time i have been plugged into one was either for a procedure, ICU visit or ER visit and the only thing i noticed is that i would have to pee alot.

My DM trainer is a believer in the gut/brain connection when it comes to chronic issues. so a ANS discord at times?

[MomtoGiuliana]

Yes when in a bad flare I lose my appetite; I also experience nausea and sometimes bad heartburn  I've never been diagnosed with gastroparesis. I typically lose 5-10 lbs within a month, which is a lot for me bc I am thin to begin with.  

When the flare eases up my appetite returns.

[Amyschi]

On 12/15/2023 at 7:35 AM, MikeO said:

Well i can say i do not have a very healthy relationship with food and to some degree food adverse as well but there are plenty of reasons for it. this was so bad 2 years ago i would not or only eat once every couple of days which creates it own set of problems (trust me) still need to fuel the body. i was 20 lbs lighter during this time.

Not sure what a IV bag would do for me as every time i have been plugged into one was either for a procedure, ICU visit or ER visit and the only thing i noticed is that i would have to pee alot.

My DM trainer is a believer in the gut/brain connection when it comes to chronic issues. so a ANS discord at times?

Wow, that's hard Mike. I can relate.  It is a lack of appetite along with the "aversion."  It's kind of a scary symptom; thus my reaching out to the group.  I believe it is the "discord".

[Amyschi]

On 12/14/2023 at 8:43 AM, Pistol said:

@Amyschi I dont feel like eating when symptomatic or in a flare. To me it always feels like I dont have the energy to eat - like if I have to even get something out of the fridge it's too much for me. When my daughter was young this was a problem because I had to make meals but could not sit at the table with my family because I was too exhausted. 

Yes, definitely the energy is a challenge too because of all the symptoms.  I don't know how you did it with a little one, or all of you here that do.  I admire that.

[Amyschi]

On 12/14/2023 at 4:00 PM, Bergbrow said:

I’ve had that aversion to food. I know I’m hungry but by the 1st bite it doesn’t matter savory or sweet, I almost can’t get it down. I try to chew it so small that I can drink it down with water.  I look at my plate and I’m trying to convince myself to eat it.  I just can’t get myself to swallow and sometimes have to take the food out of my mouth.  Aversion is the right word for me too.  I have not figured out why it starts.  This has made my weight drop down by as much as 30lbs (which I need those 30lbs).  It resolves itself usually when I finally get some stabilization of my symptoms.  But, sorry I don’t have an answer for you on how to avoid or resolve.  I’ve not eaten some of my favorite foods which should be the easiest things to eat. 

Oh my, this is me exactly.  I am so sorry you have gone through it too, but makes me feel a little better that I am not alone, and that you have improved.  Unfortunately I have no margin to lose.  Trying to get Boost and smoothies down.   Curious as to whether you are suffering from stomach upset at the time?  Or whether it is strictly neuro? Thank you.

[Amyschi]

On 12/14/2023 at 7:49 PM, RecipeForDisaster said:

I have homecare orders to get fluids whenever I need them. It took a lot of work to get it arranged, but I feel so much better knowing I can get them at home when needed. It wouldn’t just be because I can’t eat, but for a whole slew of problems to include that. Once I did not eat for 5 days, because I didn’t feel like I could, and was waiting until I got hungry. I never did. But I also could barely sit up, talk, etc. in those cases, I am definitely food averse. I can appreciate that something looks good and would taste good, and sometimes I even acknowledge that my body wants food, but I can’t imagine eating it. 

So glad you can get them at home.  True, even if my HR isn't super bad, could still use it.  I can relate to being in that state at times, mostly bedbound with weakness.  It is so scary now, as I am 64.   May I ask your age?  If not, its OK!  I am hoping to start a thread on dysautonomia in older age.  I'm imaging there are not too many of us, but I am curious.  At my age, you start getting more into the population that has PAF or MSA, sadly, I would imagine.  I developed my dysautonomia problems in my mid-40s and really noticed it in early 50s at the time of menopause.   I imagine most of you started much younger, unfortunately.

[Amyschi]

On 12/15/2023 at 10:24 AM, MomtoGiuliana said:

Yes when in a bad flare I lose my appetite; I also experience nausea and sometimes bad heartburn  I've never been diagnosed with gastroparesis. I typically lose 5-10 lbs within a month, which is a lot for me bc I am thin to begin with.  

When the flare eases up my appetite returns.

So sorry that you have to fight that weight worry too.   I feel sorry for those who need to lose, of course, but I think it is even more worrisome not to have the weight you need, as there is no cushion.   Interesting on the heartburn - is that when you lose your appetite, or can it happen with flares only??  You have given me hope, though - thank you.

[Bergbrow]

1 hour ago, Amyschi said:

Oh my, this is me exactly.  I am so sorry you have gone through it too, but makes me feel a little better that I am not alone, and that you have improved.  Unfortunately I have no margin to lose.  Trying to get Boost and smoothies down.   Curious as to whether you are suffering from stomach upset at the time?  Or whether it is strictly neuro? Thank you.

No stomach upset, no nausea unless I force myself to continue eating. Might be neuro but odd that water goes down fine but anything more substantial, including soup requires an internal pep talk. 

[RecipeForDisaster]

8 hours ago, Amyschi said:

So glad you can get them at home.  True, even if my HR isn't super bad, could still use it.  I can relate to being in that state at times, mostly bedbound with weakness.  It is so scary now, as I am 64.   May I ask your age?  If not, its OK!  I am hoping to start a thread on dysautonomia in older age.  I'm imaging there are not too many of us, but I am curious.  At my age, you start getting more into the population that has PAF or MSA, sadly, I would imagine.  I developed my dysautonomia problems in my mid-40s and really noticed it in early 50s at the time of menopause.   I imagine most of you started much younger, unfortunately.

I don’t have POTS, and am on 2 different beta blockers (day vs. night), so my HR is rarely that out of whack. I’m glad they aren’t using that for a metric - I once routinely got to a HR of 180 walking, but not now that I’m stabilized on meds.
 

I’m 43, and I don’t have much weight cushion, either. I was really thin until I had to start meds for trigeminal neuralgia, which put 20lbs back on me, and I’m almost a good weight again. I’ve been sick for about 15-20 years, but had some of this all my life - I just thought it was how everyone felt, and believed that everyone passed out sometimes.

[MomtoGiuliana]

10 hours ago, Amyschi said:

 Interesting on the heartburn - is that when you lose your appetite, or can it happen with flares only??  

Yes the heartburn is during the flare when I have also lost my appetite.

Something goes on w my digestive system but it's never been anything diagnosed beyond "POTS".

[Amyschi]

On 12/16/2023 at 10:43 PM, MomtoGiuliana said:

Yes the heartburn is during the flare when I have also lost my appetite.

Something goes on w my digestive system but it's never been anything diagnosed beyond "POTS".

Interesting, thanks, and you are right, I believe it is definitely connected.  I was reading something that said if you have dysautonomia and vagus nerve dysfunction, it effects every system - the digestive system just doesn't receive the proper nerve impulses to digest food correctly.  This was an article relating cervical instability (which I have) with vagopathy, but I'm sure it is true whether there is a structural cause or other cause of your dysautonomia.   So many people experience even gastroparesis, unfortunately.  Wishing you good luck with the med.

[Amyschi]

On 12/16/2023 at 8:37 PM, RecipeForDisaster said:

I don’t have POTS, and am on 2 different beta blockers (day vs. night), so my HR is rarely that out of whack. I’m glad they aren’t using that for a metric - I once routinely got to a HR of 180 walking, but not now that I’m stabilized on meds.
 

I’m 43, and I don’t have much weight cushion, either. I was really thin until I had to start meds for trigeminal neuralgia, which put 20lbs back on me, and I’m almost a good weight again. I’ve been sick for about 15-20 years, but had some of this all my life - I just thought it was how everyone felt, and believed that everyone passed out sometimes.

Wow, I'm sorry, I know that's a long journey too.  Not good that you developed the TN, so painful, but kind of a good benefit with the weight gain!  Hope that at least is under  control.  Thank you.