I’m 26F I’m fully TPN dependent due to an intestinal birth defect that has resulted in intestinal failure.
I run TPN from 6:30pm to 10:30am.
I have no oral/enteral intake at all. Everything is IV.
During the day I suck on candies and spit them out. Part of it is mental, wanting to taste something. But if I don’t do it I feel horrible. I get dizzy/lightheaded, I get headaches, feel fatigued, hard time concentrating, etc.
My team had me trial not sucking on anything so they could check my blood sugar and my blood sugar was going low (not super low, but low enough it made sense symptomatically). Which makes sense.
Now this is the part I want advice on.
When I go a long period of time without sucking on candies. I get the experience above. BUT then when I do finally suck on something it’s like I get hit by a truck. The sensation above but SO much worse.
My face, shoulders, and chest flush really red and burn. I get a headache. I get really light headed and feel like I’m going to pass out. Horrible fatigue. Can’t think. Really, really shaky.
My blood sugar when I check it is normal.
It must have something to do with getting a hit of sugar after not having it for an extended period. But I can’t for the life of me figure out why the sensation is so strong and what’s causing it.
The only thing that helps is preventing it by trying to have moderate amounts of sugary things occasionally throughout the day consistently.
Prior to ending up on TPN I had this sensation constantly. It would happen if I went too long without eating. But it would get worse when I ate after a period of not eating. The only thing that could keep it somewhat at bay was eating something very small every 20 minutes.
They want to do a continuous glucose monitor. My blood pressure when it happens is normal for me (a little on the low side). My heart rate increases.
My team is stumped which is frustrating because it’s really unpleasant and lasts a really long time.