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Hey all,

If you've seen my previous thread, you know i've been feeling unwell for a few weeks.

Since last weekend, i had trouble eating anything at all. I still keep up with water, but i know that skipping meals or not eating at all is not good, since i will probably start lacking minerals and go further into a negative feedback loop.

My question is : What can i do to eat if i'm currently anxious and depressed about my situation? When i eat i sometimes feel full / nauseated.

Thank you for the support and i hope you are all having a good day

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Hi @whoami!

I'm sorry you are going through this - it is really awful.  The first thing I will tell you is - DON'T PANIC.  In my case, this was gastroparesis and I'm sure any anxiety I was feeling wasn't helping.  It happened to me two distinct times last year when I was still being worked up by different specialists and not yet officially diagnosed with POTS or on any meds.  It turned around on its own both times.  Both times, I lost ten lbs. in two weeks.  I'm not overweight so it was scary but, honestly, I think it's scary no matter what someone's weight situation is.  Anyway, here's what helped me - I drank broth, Pedialyte, Gatorade, Ensure, Carnation Breakfast drinks (in a bottle, kind of like Ensure), milk, and of course water.  I had just baby-small portions of actual food - I literally bought jars of baby food and ate what I could so I would at least have some balance in what I ate - meat, veggies, etc.  I could only take a couple of bites and I would feel full.  I also ate what soup and broth I could.  Don't ask me why, but I had a very frequent craving for chicken soup when my symptoms were intense and I wasn't yet diagnosed.  If there is *any* kind of food you really like, that is easy for you to eat, now's the time to eat that, even if you can only take a couple of bites.

The second time it happened, I went to a GI specialist . . . he said it sounded like gastroparesis and when I told him I was scheduled to be tested for POTS (TTT), he said it could very well be POTS-related, so go do the test, if it's POTS get treated, and if that didn't help or if it turned out to not be POTS, to come back and see him.  I remember he told me I should be getting 1700 calories a day and I was, like, I can barely do 500.  It hasn't happened (knock wood!!) since I've been diagnosed and placed on a low dose of a beta blocker.

Have you been diagnosed with anything yet - are you taking any meds?  As I said, try not to panic because that will only make you feel worse and further decrease your appetite.  I know that is easier said than done . . . I know how scary it can be when your symptoms are out of control.  If at all possible, try to get seen by someone familiar with autonomic dysfunction, even if you have to pay out-of-pocket . . . having someone "on your case" will do wonders for your peace of mind, even if you don't get all the answers at once.  And I am sure you will also get much helpful advice from others here.  Sending positive thoughts and good vibes your way!!

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Thank you from the bottom of my heart. How are you feeling nowadays after being diagnosed? Better?

Anyway, yes my main problem is that im panicking / feeling nervous all day. Therefore, my appetite tanks and i feel nauseated all the time. I have not been diagnosed with anything. I'm in the process of changing Anti Depressants (from Lexapro, to paxil). I was on 15mg of lexapro daily and i think both the withdrawals of the lexapro and the new med (paxil) are causing me to have problem with my appetite, on top of having me nerves being pulled (constantly nervous). I'm scared constantly that my heart will stop because of my symptoms (high heart rate, etc) (despite having every heart related tests on the planet telling me otherwise). It has been such a long journey since the death of my mother :(.

On top of all that, i'm crying all day. I truly feel like a teen girl atm (i'm not downplaying what it feels to go through these feeling as a young girl, just that its how i feel atm).

I will do what you told me and try to not feel panic just because im not eating.

I am in the process of pushing for neuro referrals at the chum (montreal research institute). Apparently there is a neuro there experienced with POTS and other form of dysautonomia (maxime lamarre cliché).

Hopefully i get better soon, this is killing me 😐

In any case, thank you very much for the support and have a good day

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@whoami

4 hours ago, whoami said:

How are you feeling nowadays after being diagnosed?

Knock wood, definitely better than before I was diagnosed.  I mean, it got to the point that I wasn't functional as far as doing everyday things - I couldn't drive when I was having brain fog, dizziness and/or lightheadedness.  Pushing a cart of dog food to my car from the pet store, I became tachycardic and my blood pressure also jumped.  I had to go back into the store and sit for a while and it took over an hour for things to settle down.  It wasn't even that much stuff, maybe 20-30 lbs. of dog food, if that, that I was pushing in a shopping cart.

I still have symptoms, and flares, but I can function closer to normal now than I was able to before I was dx'd.  I definitely think the med has helped and I am grateful.

Part of the nature of this, at least in my case, is that you get an exaggerated autonomic response, which can include feeling nervous physically even when your brain says you're not.  This could be why your nerves are getting so shot.  Honestly, if your cardiac tests came back normal, I would take great comfort in that, if you can - I am no cardiologist, but it seems to me that if your heart were going to stop from all of this activity, it would have already done that!  Try not to let the worry affect the quality of your life any more than the physical symptoms already have.  Do things you enjoy, if you are able, and try to distract yourself from those thoughts.  You've got this.  I am keeping my fingers crossed that you will get in soon to see the neuro who is well-versed in dysautonomia because, as I said earlier, I think this will go a long way towards putting your mind at ease.  

You mentioned nausea - that can be another symptom of POTS.  Before I was diagnosed, there was a stretch where I was nauseous almost every single morning.  One of my mottoes at that time was, "Pepto-Bismol - not just for breakfast anymore!"    

 

 

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5 minutes ago, Delta said:

@whoami

Knock wood, definitely better than before I was diagnosed.  I mean, it got to the point that I wasn't functional as far as doing everyday things - I couldn't drive when I was having brain fog, dizziness and/or lightheadedness.  Pushing a cart of dog food to my car from the pet store, I became tachycardic and my blood pressure also jumped.  I had to go back into the store and sit for a while and it took over an hour for things to settle down.  It wasn't even that much stuff, maybe 20-30 lbs. of dog food, if that, that I was pushing in a shopping cart.

I still have symptoms, and flares, but I can function closer to normal now than I was able to before I was dx'd.  I definitely think the med has helped and I am grateful.

Part of the nature of this, at least in my case, is that you get an exaggerated autonomic response, which can include feeling nervous physically even when your brain says you're not.  This could be why your nerves are getting so shot.  Honestly, if your cardiac tests came back normal, I would take great comfort in that, if you can - I am no cardiologist, but it seems to me that if your heart were going to stop from all of this activity, it would have already done that!  Try not to let the worry affect the quality of your life any more than the physical symptoms already have.  Do things you enjoy, if you are able, and try to distract yourself from those thoughts.  You've got this.  I am keeping my fingers crossed that you will get in soon to see the neuro who is well-versed in dysautonomia because, as I said earlier, I think this will go a long way towards putting your mind at ease.  

You mentioned nausea - that can be another symptom of POTS.  Before I was diagnosed, there was a stretch where I was nauseous almost every single morning.  One of my mottoes at that time was, "Pepto-Bismol - not just for breakfast anymore!"    

 

 

Hahahaha I love your positive outlook on life, thanks a lot :). I hope too that i get a neuro appointment soon! Your words are really helping me through this :)

Something funny, however : Before i had my "flare" (ill call it that because i dont know what happened), eating A LOT (and i mean it, like, a large pizza on my own) was actually the best feeling ever. It would seems that whenever i overloaded my system with food, the blood required for digesting was helping me feeling less jittery? My symptoms were relieved and i felt a lot better. Especially heart rate wise.

Also, for the last 4 months, i was on an OMAD diet (One meal a day), so i was cramming 2000 calories in one sitting, everyday. I felt really good on that diet and lost a lot of weight (what i wanted). Went from 250 pounds (im 6'3") to 224 pounds.

But i'm glad you got better after getting on medication! Hopefully (if i do have pots) it'll be the same!

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I haven't had an appetite since March no matter how long I go without eating. I'm trying to tempt myself and sometimes force myself to keep taking in calories. Sometimes the smell of something good like pizza or Chinese food will help me to be interested in food, even without hunger. I have a lot of nausea too but I can take zofran to help with that. I try to make myself take in ice cream, cheese, nuts, etc. as concentrated sources of nutrition and calories, and I supplement with homemade shakes, too. I'm a huge foodie, though, so it's weird and disappointing to not want to eat. I usually feel worse after eating, even if it isn't much.

 

I've lost 13 lbs and was thin to begin with... the doctors I've seen recently aren't concerned but everyone else is! I've never been this light as an adult. I think it's just secondary to my low BP and not doing well. My body doesn't seem to want the burden of digestion on top of fighting to keep sort of functioning!

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@RecipeForDisaster - have your doctors ever considered appetite-stimulating meds?

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They might if they seemed to have any interest in anything that's wrong with me! I don't know what it will take to make them care, unfortunately. Maybe if I lose another 5 lbs. They definitely believe all of my issues but I think they feel emasculated/frustrated by not being able to find the cause, so they tell me I need to adjust and live with everything . Obviously in many cases that isn't healthy. BP in the low 70s as a new baseline, passing out, not eating for days unless I force myself, plus much more... come on, how does one get used to that? 

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On 7/17/2019 at 6:16 AM, RecipeForDisaster said:

They might if they seemed to have any interest in anything that's wrong with me! I don't know what it will take to make them care, unfortunately. Maybe if I lose another 5 lbs. They definitely believe all of my issues but I think they feel emasculated/frustrated by not being able to find the cause, so they tell me I need to adjust and live with everything . Obviously in many cases that isn't healthy. BP in the low 70s as a new baseline, passing out, not eating for days unless I force myself, plus much more... come on, how does one get used to that? 

I feel sorry for you :(. If i had a magic wand available, i would cure everyone on this forum instantly... There's just no reason for any of you to feel like that.

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