JuneFlower Posted February 13, 2014 Report Share Posted February 13, 2014 My daughter has lost so much weight, she may have to be hospitalized . She does not have anorexia nervosa nor has anyone suggested that . Has anyone heard of POTS causing weight loss? She's having a few more tests soon.June Quote Link to comment Share on other sites More sharing options...
LastUnicornLady Posted February 13, 2014 Report Share Posted February 13, 2014 I, too, have lost quite a bit of weight since my diagnosis- in spite of being on a steroid. If your daughter has issues with nausea, loss of appetite, or vomiting, those could all be causes of the weight-loss. If she's not getting the nutrients she needs (through no fault of her own!!! I'm not suggesting anorexia at ALL!), then she could be just not eating enough. This is the reason I've lost weight... Or, if she's having issues with (sorry for the TMI) diarrhea or some other kind of absorption issue, then it's possible that, while she's getting enough to eat, the good things she's eating aren't really digesting very well. Or it's also possible that there's something else going on that you don't know about yet. I know that a lot of POTSies (myself included) end up having a lot of things ruled out before their diagnosis, but it's still possible that they missed something. Be sure to keep us updated! Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 13, 2014 Author Report Share Posted February 13, 2014 The only thing she seems to sometimes have is loss of appetite. She was having abdominal pain & vomiting but that's gone. They are testing her for Addison's in 2 weeks and going back to GI to try to get some answers. Thanks for your input.June Quote Link to comment Share on other sites More sharing options...
srb Posted February 13, 2014 Report Share Posted February 13, 2014 I'm sorry to hear about your daughter's struggles, June. I have struggled off and on with unwanted weight loss, even prior to my recent presumptive diagnosis. I have always had a low BMI and some GI issues here and there (no diagnosis). Loss of appetite was one of the reasons for the weight loss in my case. Over the spring/early summer of 2013, however, I changed my eating habits, trying to consciously gain weight. I was drinking lots of protein shakes and trying to eat bigger portions. This hardly made any difference. Now that I have an idea of what's going with me, I realize I was doing all the wrong things. I have recently gained some weight after switching to the high salt diet, eating 5x a day/grazing, eating slowly, etc. I also broke down and went to a naturopath (something I had never tried before). He gave me numerous supplements to help with digestion, protein absorption and adrenal fatigue. Apparently the numbers he looks at were all pretty off for me. I'm still not 100% sure how much the supplements did or didn't help.Best wishes for getting your daughter the help she so needs! I have experienced that being underweight is a pretty lonely place... most people don't want to hear about it or make unkind jokes and don't understand how it can affect one's health. Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 13, 2014 Author Report Share Posted February 13, 2014 Yes that is true but I don't think anyone has been saying anything to her yet. She's only 13. But I can understand what you are saying. Frequent meals have been suggested. We'll see how it goes. June Quote Link to comment Share on other sites More sharing options...
angelloz Posted February 13, 2014 Report Share Posted February 13, 2014 I absolutely suffer from unwanted weight loss. It was one of my first symptoms and I had a loss of appetite. When I have a flare I start to drop. What helps me is eating frequently and trying to add in a few fats..butter, hamburger etc... I have gained back 10 pounds but this has taken forever compared to the time it took to lose weight. I am still 18 pounds lighter than my pre- dysautonomia weight. I feel better when I can keep on some of my weight. Had many tests but no real answers. Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 13, 2014 Author Report Share Posted February 13, 2014 I wonder what causes the loss of appetite in Dysautonomia. Maybe the circulation in the stomach is disrupted in some way? Thanks for letting me know she's not the only one!June Quote Link to comment Share on other sites More sharing options...
Lethargic Smiles Posted February 14, 2014 Report Share Posted February 14, 2014 I always wonder if the ANS spending more time in sympathetic (fight or flight) mode has something to do with it -- like maybe it burns more calories in that mode? Also, if we think evolutionarily, our ancestors would have benefited from not feeling hungry while in sympathetic mode -- all their focus could have been on outrunning the tiger or whatever. Quote Link to comment Share on other sites More sharing options...
Lethargic Smiles Posted February 14, 2014 Report Share Posted February 14, 2014 I'm sorry your daughter is so ill. It's good to hear the doctors are taking her condition seriously.Does your daughter have any discomfort after eating and/or does it feel as though the food is just sitting there? Is she constipated at all? Is she bloated? I guess what I'm asking is, does she have any GI symptoms at all? Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 15, 2014 Author Report Share Posted February 15, 2014 She has a GI dr who is following up with her this week. She has all those symptoms but not all the time. I don't know about the flight or fight in relation to illness...Thanks for commenting. June Quote Link to comment Share on other sites More sharing options...
gjensen Posted February 15, 2014 Report Share Posted February 15, 2014 I lost a lot of weight going into this. Way more than was good for me, and it was pretty fast. I did have a variety of GI symptoms that came and went. I could not suggest possible causes etc., but . . . Ensure and the equivalents helped me turn it around. They are pretty calorie and nutrient dense for such a small portion. I have been able to gain a third of my weight back, and my system seams to be in better shape. I can eat more now. I am still concerned about muscle loss, I wonder f I have not lost more than what can be explained by any deconditioning. Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 15, 2014 Author Report Share Posted February 15, 2014 gjenson-Thanks . Yeah I can't get my daughter to drink any of those nutrient dense things. She will sometimes have a carnation instant breakfast . It has 2x the protein but that's it . The nutritionist said she is in bad shape and at risk for cardiac failure etc. we are going back on Monday for weight check. If she hasn't gained, she is going to recommend a program to help her eat. ???? Not sure what that means. She has been eating and is not anorexic. I will talk to the pediatrician if I have to about this.June Quote Link to comment Share on other sites More sharing options...
gjensen Posted February 15, 2014 Report Share Posted February 15, 2014 I am wondering how much weight she has lost. From where to where. I am also wondering if her system is not running slow. My issue initially was swallowing, but then my system got so slow that I could not get anything in me. I would literally be full from the day prior. That was not good for the appetite. Another thing I did was replace water with coconut water etc. I would get a 100 calories instead of none. I do not know if your daughter would like it. My wife does not like them, but I think they taste pretty good. They were especially refreshing to me then. Not as much now. I do not like the flavor of some of the Ensures, Boost, etc. There is some I like or can tolerate though. Maybe there is a brand with a flavor that she would like. I also made a chocolate peanut butter milk shake. I took the carnation breakfast,added it to the milk, through a scoop of body builder powder in, made a chocolate milk shake with it, and added peanut butter. It was tolerable, and more sugar than you might want, but it had a lot of calories. I needed the calories. I could not afford to burn what little I was getting. I definitely took my vitamin everyday. Of course I do not know why, and am not a nutritionist, or a doctor. I can only share what I did to fight the issue I had. I was trying to achieve small victories. It is good to hear the doctors taking it seriously, and digging in to know why, and want to do something about it. That is a positive thing. It is a lot easier to address a problem if the problem is known. It is good to have a doctor want to cover all of the bases. I wish your daughter well. You as well. I am a parent to. Quote Link to comment Share on other sites More sharing options...
xRobin Posted February 15, 2014 Report Share Posted February 15, 2014 I too had a rapid weight loss of about 7 pounds around the time I developed POTS symptoms, from loss of appetite. I'm so sorry that your daughter is having to cope with this. For me it was a little easier to eat at night, so I would drink try to drink calories during the day, protein smoothies or milk or whatever (ensure is pretty gross but I drank that sometimes) and then eat a couple of meals or a meal and a snack later when the idea of eating wasn't so sickening. I tried not to worry about what I was eating, just getting the calories in.Thankfully, for me, my appetite returned and I've been able to put the weight back on. I hope the same happens for your daughter. As a mom it must be tough for you to see your daughter struggle so my thoughts are with both of you! Quote Link to comment Share on other sites More sharing options...
srb Posted February 15, 2014 Report Share Posted February 15, 2014 Very interesting, xRobin, I also typically do much better with eating at night.JuneFlower, my primary tried to suggest an eating disorder with me and nutritional counseling. In my heart, I knew that wasn't true, but after a while it started messing with my mind, erode my confidence.Snacking when I feel the least bit hungry has really helped. Quote Link to comment Share on other sites More sharing options...
Lethargic Smiles Posted February 15, 2014 Report Share Posted February 15, 2014 I lost almost 20 pounds at one point from POTS. I went from 133 to 116. It was a result of gastroparesis and nausea/vomitting, but even when I ate, it was really hard to put on weight.What helped me was small meals, not drinking with meals (this is what they told me to do at Mayo to help with the food just sitting there), getting calories from drinks when I could (I don't like to ingest much sugar, but to put on weight, I'd drink pop), adding fats/sugars to foods, and using digestive enzymes with meals to help them break down and get moving along more easily. I like Source Naturals Daily Essential Enzymes.Staying hydrated was important for me too. If I get even a little dehydrated, I am instantly nauseous. Quote Link to comment Share on other sites More sharing options...
Krissy21 Posted February 16, 2014 Report Share Posted February 16, 2014 I have lost about 10 lbs since my pots started and now borderline being underweight. I weigh about 110lbs now but I struggle to keep it there and am not able to gain any. I try to eat small frequent meals that are high in protein and calories. Milkshakes are lifesavers. I hydrate with regular Gatorade as well to get the extra calories from that. Some days I am hungry non stop and others I have no appetite at all. I was told the same thing that Jackie M said about the sympathetic nervous system and fight or flight response affecting appetite and digestion. Basically, the autonomic nervous system has two parts, the sympathetic and the parasympathetic. The sympathetic is your "fight or flight" response so blood is directed away from the digestive system and to the muscles, heart, lungs, etc. Your heart rate increases while digestion slows down. The parasympathetic is your "rest and digest" response. The opposite effect happens here and you are able to digest food better. I was told that people with autonomic dysfunction spend a lot more time in sympathetic mode. This is why we have a harder time digesting food and actually feeling hungery since our bodies are not in the right mode for eating and digesting food. I hope that explanation makes sense. Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 16, 2014 Author Report Share Posted February 16, 2014 Krissy21- yes that does explain it. Thank you.Thanks to everyone who posted on this topic. My daughter went from 95lb to 83. She is 5'3" so that is a very low BMI. But the nutritionist also did extensive testing and found she is just burning her own muscle right now, would have no appetite at this weight and metabolic rate and probably has the beginning of osteoporosis. I am taking her to be weighed tomorrow which is just over a week since her initial appointment. Hopefully she has gained something.I will look into finding recipes for yummy shakes that I can add calorie dense powder to.I have to hide it cause if she sees a lot of food, she just stops eating and says she is full.June Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 17, 2014 Author Report Share Posted February 17, 2014 So my daughter gained 5.8lb! It's mostly muscle and good stuff too. The nutritionist is happy and no longer worried. I am really thinking the weight loss was from Effexor. We are weaning her off. We have an appt with Dr Boris in a couple months. Maybe she'll get better before then? Just thought is update. Thanks ya'llJune Quote Link to comment Share on other sites More sharing options...
gjensen Posted February 17, 2014 Report Share Posted February 17, 2014 That is great news. Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 17, 2014 Author Report Share Posted February 17, 2014 Yes it is, thank you. I almost feel silly taking her to the POTS specialist. But she is always so up and down. I guess I'll keep the appointment and see how she does over the next 3 months.June Quote Link to comment Share on other sites More sharing options...
Lethargic Smiles Posted February 17, 2014 Report Share Posted February 17, 2014 That's wonderful news! My fiancé takes Effexor and it tends to decrease his appetite and back him up.Has she been diagnosed with POTS? Think of it like this: POTS specialists tend to take awhile to get into. By taking her, you will be able to gather information and a plan to be prepared for if there is a "next time" with the weight loss and any other problems. Hopefully there isn't! I found it helpful that Mayo laid out a plan of what medications may help in various scenarios so my GP could just go off of that rather than me always having to call Mayo. Of course, most doctors are much more available for followup than Mayo's autonomic clinic doc tends to be since they are mostly for consult, not carrying out treatment, purposes. Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 17, 2014 Author Report Share Posted February 17, 2014 Thank you Jackie M. Yes she has been diagnosed with POTS with overlying very low blood pressure. Her cardiologist said if she still isn't well after he gave her some meds, that she should see a POTS specialist. She takes midodrine and nadolol and now she isn't passing out but she still has many other symptoms. At this very moment she feels pretty good. So I feel funny taking her to a specialist that is 2 states away.June Quote Link to comment Share on other sites More sharing options...
srb Posted February 18, 2014 Report Share Posted February 18, 2014 Wonderful news! I also was told that I was digesting muscle last fall and that was pretty scary... so glad you have found professionals that can help your daughter. I wouldn't feel funny taking my child to a specialist if she had this diagnosis. Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 18, 2014 Author Report Share Posted February 18, 2014 Now we finally have the opportunity to meet with Dr Julian Stewart. I just have to send over her records. I spoke with his nurse today and she was very nice.thanks srb-yeah it's just that she has been great the last week. Maybe as she gains more weight all her POTS issues will go away?June Quote Link to comment Share on other sites More sharing options...
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