Katybug Posted January 11, 2012 Report Share Posted January 11, 2012 So, we always talk about the nausea/vomiting/diarrhea/cramping/no appetite part of POTS. I have that multiple times a year and I usually lose 15-20 lbs. in about 2-3 weeks when it happens. I have not had one of these episodes since late summer and I am not complaining about that.But, I have a new thing going on...I can't seem to stop eating. I am almost never satiated. If I do feel full, it only lasts for 1/2 hr. to an hr. I have gained all the weight I lost the last time and then some. And, honestly, the eating is out of control. It is almost compulsive and I have never had this problem before. I often notice that it is associated with my POTS symptoms in one way or another. Today, I couldn't get warm and I had just eaten lunch (a LARGE salad and a small chicken salad sandwich) so I should have been full. When I finally gave in and ate more (much more) until I "felt" full, I also became warm. I also find that when I feel like I need salt, I will have a compulsion to eat large quantities but once I do, I feel better all over. Dizziness and weakness go away for a while. I have been tested repeatedly for hypoglycemia and diabetes and have no problems there (at least not according to labs and blood sugar monitoring.)Does anyone else experience this? It is getting out of control for me and I am excercising but of course that is limited to what I can do without bringing on more problems. Quote Link to comment Share on other sites More sharing options...
JennaC Posted January 11, 2012 Report Share Posted January 11, 2012 Have you been tested for gastric motility problems? Before I was treated for gastroparesis, I was hungry all the time. the thought being that delayed gastric emptying results in a starvation effect. Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 11, 2012 Author Report Share Posted January 11, 2012 I have been in the past but maybe its time again. Quote Link to comment Share on other sites More sharing options...
peregrine Posted January 11, 2012 Report Share Posted January 11, 2012 I get this from time to time, where I just want to eat constantly, or feel like I'm starving even though I just ate (does sound a bit less severe than yours, but the symptom sounds the same). I always thought it couldn't be due to my guts moving more slowly - wouldn't I feel full longer then? - but JennaC's explanation does make some good sense.Any chance you can keep healthy high bulk low calorie snacks around? Things like carrot sticks, or salads, hot tea (to warm you up without giving you calories), soup, etc? Does sucking on a piece of hard candy constantly keep it at bay? Quote Link to comment Share on other sites More sharing options...
anaphylaxing Posted January 11, 2012 Report Share Posted January 11, 2012 How long have you been on Florinef? Steroids make me ravenous Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted January 11, 2012 Report Share Posted January 11, 2012 I felt this way when pregnant, which I think is normal w pregnancy, however I do believe that POTS was playing some role too. B/c I had the worst POTS symptoms of my life during and immediately following pregnancy. Eating more protein helped to some extent. I also agree on bulking up with raw veggies. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted January 11, 2012 Report Share Posted January 11, 2012 I'm thinking along the line of Anaphylaxing. I believe cortisol tends to make one hungry. Even though I see you don't take it, possibly your adrenals are putting more out? Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted January 11, 2012 Report Share Posted January 11, 2012 That is a good point. I think, for my case, pregnancy causes higher cortisol and I think on top of that I was producing more due to the "stress" of POTS. I suspect many of us produce more cortisol due to orthostatic stress, etc. Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted January 11, 2012 Report Share Posted January 11, 2012 Candidiasis will do this too. You can get tested for this or just treat it via diet and supplements. The info is on the web .. Are you gluten and dairy free ? Both of these can act as opioids in people with leaky gut which makes you crave them ... Eating too many carbs will definetly make me eat more frequently too tho. They just don't hold me like real food does. Fats help but not as much as eating some meat ... tc ... d Quote Link to comment Share on other sites More sharing options...
Clairefmartin Posted January 11, 2012 Report Share Posted January 11, 2012 I'm feeling this way too! I eat, and am starving 1/2-1 hour later. I have been blaming it on emotional eating, but my docs yesterday thought it was something more.I mentioned gastropareis, but they seemed to thing some sort of adrenal deficiency was more likely. We'll see.Feel better! Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 11, 2012 Author Report Share Posted January 11, 2012 Thanks, everyone. Those are some good leads. I forget that the Florinef can have other steroidal effects besides just holding on to salt/fluid. This did start after being on the Florinef for a little while. I have tried seeing if different combos of food, for example low carb, lots of veggies and proteins, would make me feel fuller than moderate/high carb diet. That's what makes me think it might me autonomic issues...I should feel full after eating 3/4 of a dinner plate of veggies and a chicken breast but I don't. I know logically I should feel full but I don't. Same with high carbs...I still don't feel full. I have been tested within the last month for candidiasis and I don't show infection. If you think of anything else, let me know. I'm gonna work on these ideas in the meantime. Quote Link to comment Share on other sites More sharing options...
Trach Posted January 11, 2012 Report Share Posted January 11, 2012 My daughter has always eaten significantly more during a flare or migraine. The worse the POTS flare or migraine, the more she eats. She exhibited this type of eating behavior before she was on medicine for migraines and throughout her med changes. My daughter's doctor believes the extreme eating is due to a dysregulation of the hypothalamus.Whenever my daughter was hospitalized and saw staff neurologists, the doctors were shocked as to how much she ate (Especially since she is not overweight) and the temperature of the room (55 degrees!) Quote Link to comment Share on other sites More sharing options...
issie Posted January 11, 2012 Report Share Posted January 11, 2012 This can also be a sign of malabsorption - I've had this in the past. Your body thinks it's starving because you aren't uptaking the nutrients from your food. You need to start using enzymes with every meal and also using probiotics to get the imbalnce of the flora corrected. This will settle down that "I'm starving", feeling. You very well might be starving - your body thinks it is because you aren't getting what you need from what you eat.Issie Quote Link to comment Share on other sites More sharing options...
Chaos Posted January 11, 2012 Report Share Posted January 11, 2012 I've had similar symptoms too. Even sometimes when I'm nauseated I have the feeling that if I eat something it may help. Usually doesn't but still feel like I want to eat. It's funny because some days I have the feeling that I eat and 7-8 hours later I still feel full and am having reflux and then some days I eat and feel hungry almost immediately. Those are the days I really think chocolate may be the answer. LOL. Never is, but I keep trying. When I first was sick to the point of being disabled, I lost 17 pounds. Slowly gained back 7 of those but after being on Florinef briefly, I gained 10 pounds in 1 month. Haven't been able to lose it (even a year after stopping the florinef) and have gained another 8 no matter how hard I try to watch what I'm eating. I exercise as able but that usually results in migraines and days of being wiped out if I exercise enough to help lose weight.If you find something that helps please let me know! Quote Link to comment Share on other sites More sharing options...
Chaos Posted January 11, 2012 Report Share Posted January 11, 2012 Issie- my body seems to be absorbing fat just fine. LOL Wish it would absorb some nutrients along with it. Quote Link to comment Share on other sites More sharing options...
issie Posted January 11, 2012 Report Share Posted January 11, 2012 Issie- my body seems to be absorbing fat just fine. LOL Wish it would absorb some nutrients along with it. Oh, you're too funny!!! I know, mine is too. Have the same issues with weight gain and can't seem to get it to budge. I need to get some off and I know I'd feel better. But, sometimes chocolate does call. You know they say if you need mangnesium you crave chocolate. I just like the creamy, silky, lushious feel in my mouth and the taste doesn't hurt either. LOL!!Issie Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 11, 2012 Author Report Share Posted January 11, 2012 issie,I am familiar with probiotics but can you tell me which enzymes you are referring to? It would make sense that this may be malabsorption issues. For reasons I'm sure you don't want me to describe, I know I do not digest my food completely, so I very well may be malnourished in the true sense of the word. (Even though, I too, am currently absorbing fat just fine. ) Quote Link to comment Share on other sites More sharing options...
issie Posted January 11, 2012 Report Share Posted January 11, 2012 The enzymes I use are: Similase by integrative therapeutics and the probiotic is Probiotic-10 50 billion by NOW. I mail order them from a place out of NJ and they are about 50% off of retail. Don't think I can list them on line. But, if you PM me I'll give you their phone number. Real nice bunch and they can get just about anything you want at 30-50% off retail. Best place I've ever used for supplements. I've tried a whole lot of different ones and these work the best for me.Issie Quote Link to comment Share on other sites More sharing options...
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