Issues with eating

[Maili]

Hello!

I have been struggling with eating for a while now. Normally I can push food down with the struggles I face (difficulty swallowing, constant nausea and stomach pains) but now something new has come up and I thought it would go away. It's been 4 days now. 

You know when you eat something and your gag reflex is triggered? You start dry heaving? Anything I eat, my gag reflex is triggered and it forces me to spit it back out. It's been 4 days, I haven't eaten anything because when I try - I'm heaving and spitting it back out.

I have Orthostatic Hypotension but my doctors feel it was a misdiagnosis from my old care team (who were horrible) and that it's POTS. I am on midodrine and flutocortizone. My symptoms are worsening over time. My tremors are more frequent, I have really bad vertigo, I need a walker to be mobile..and now eating has become a challenge as well. I am a 26 year old female.

Has this happened to anyone before? What can I do to ease this discomfort? I ordered some ensures, protein shakes and v8s to still get nutrients but I don't know how long that will help until my GI appointment in 3 months.

 

[Pistol]

@Maili your doctor might order a swallowing study. This is done with a radiologist - they xray you while swallowing a contrast medium and they can see what happens. Then a speech therapist ( they work with swallowing problems ) may want to work with you depending on the outcome of the test. 

[Maili]

12 hours ago, Pistol said:

@Maili your doctor might order a swallowing study. This is done with a radiologist - they xray you while swallowing a contrast medium and they can see what happens. Then a speech therapist ( they work with swallowing problems ) may want to work with you depending on the outcome of the test. 

Saw my doctor today. She ordered tests for a GI and instead of 3 months it's 3 weeks. Endoscopy and colostomy. 

When I went in to see her, I had something new that happened. Last night I had a coughing fit and saw I had coughed up blood. Telling her this on top of everything she already knows - she proceeded to tell me it was my anxiety causing all of this. That hurt. I've switched my primary 8 times in the span of 2 years cause they wouldn't take me serious. My cardiology team was switched 2 times - my present cardiology team is amazing as they have prior evidence from my old care team and new evidence from recent tests supporting POTS. 

I'm at a loss again as I'm dealing with a doctor who never looked at my file, and doesn't know what POTS is. 

[MikeO]

14 hours ago, Maili said:

she proceeded to tell me it was my anxiety causing all of this. That hurt. I've switched my primary 8 times in the span of 2 years cause they wouldn't take me serious. My cardiology team was switched 2 times

Sorry to hear you are having to go thru this. I too have had to switch Doctors multiple time but have finally have a support team that gets my Dysautonomia even the dietician i am seeing is aware of POTS etc....

Hang in there and keep working on a care team that works for you. 

[Bergbrow]

@MailiSorry to hear about your struggles and the lack of care from your doctors. I too had a 2-week period where I felt I couldn’t get food down my throat. Water/liquid was fine, any solids would have to challenge the gag-reflex and everything that was chewed never made it down and had to be spit out.  No throat obstructions, just couldn’t even force it down, barely ate at all and lost almost 15lbs in less than 2 weeks.  I could handle small amounts of V8, broth/liquified soups, vitamin waters, couldn’t handle Ensure.  My doctor fortunately was fully invested bc the rapid weight loss also caused serious concern.  I tell this long story to help you get confirmation that what happened to you is real.  When you said your doc said it was anxiety, that bothered me too. Some doctors, smh.

We were never able to determine the trigger or how it resolved. You mentioned that your symptoms had been worsening and uncontrolled prior to the gagging.  I am significantly debilitated this summer so many of my symptoms are crushing me. This for now is added to the list of my “symptoms”.  Eventually I started to be able to swallow solids again.  Why? We have no clue. (Unfortunately)gained all the weight back but we’re still unclear what triggered it. Hope you can find a solution.  Sorry you’re struggling with this, I never want to go through that again.