coloredblood Posted January 6, 2009 Report Share Posted January 6, 2009 Hello all, I am at a loss as to what to do. I don't eat much, small meals and I eat what I can because of constant nausea. I can't exercise at all right now. I haven't been able to for about 4 months. Even before that I noticed that my weight was rapidly going up. I have gained 60 lbs. in the past 6 months. 10 in the past 3 weeks! this is crazy and I seem to have no control. If anything I seem to see that people with POTS have trouble keeping weight on. My doc thinks it's because of the Fludrocortisone. what do you all think. comments, advice, anything?~nancy Quote Link to comment Share on other sites More sharing options...
Elegiamore Posted January 27, 2009 Report Share Posted January 27, 2009 Hello all, I am at a loss as to what to do. I don't eat much, small meals and I eat what I can because of constant nausea. I can't exercise at all right now. I haven't been able to for about 4 months. Even before that I noticed that my weight was rapidly going up. I have gained 60 lbs. in the past 6 months. 10 in the past 3 weeks! this is crazy and I seem to have no control. If anything I seem to see that people with POTS have trouble keeping weight on. My doc thinks it's because of the Fludrocortisone. what do you all think. comments, advice, anything?~nancyHi - I have the same problem, but it is a new symptom. I find that I am constantly hungry, but gaining more weight than would be normal for what I'm eating. As I have a severe hyperadrenaline POTS condition, I am reading Forum postings about blood sugar problems and adrenaline swings, but my endocrinologist just "fired" me, stating that he simply doesn't understand my condition.My POTS doctor simply tells me to eat less, and follow a hypoglycemic diet. yes, I didn't gain weight until I got on Remeron to sleep, but for nine months Remeron didn't increase my weight. Now I have gained almost 50 lbs.Could somebody please help us?Elegiamore Quote Link to comment Share on other sites More sharing options...
jump Posted January 27, 2009 Report Share Posted January 27, 2009 I had a good friend who went on remeron and gained about 60 lbs, and the weight gain didn't start until she had been on it for almost a year. I believe that drug in particular can have a major impact on weight; my friend was also ravenously hungry when she was on it.In her case, the weight gain did eventually stop, and although she was a little overweight and not thrilled she still looked fine to everyone else, and it really helped with her symptoms. After about five years she found she no longer needed the remeron and slowly tapered off, and lost all the weight she had gained without even trying. Maybe in your case the drug is the culprit, too -- have you talked to your doctor about that? Quote Link to comment Share on other sites More sharing options...
futurehope Posted January 27, 2009 Report Share Posted January 27, 2009 Hello all, I am at a loss as to what to do. I don't eat much, small meals and I eat what I can because of constant nausea. I can't exercise at all right now. I haven't been able to for about 4 months. Even before that I noticed that my weight was rapidly going up. I have gained 60 lbs. in the past 6 months. 10 in the past 3 weeks! this is crazy and I seem to have no control. If anything I seem to see that people with POTS have trouble keeping weight on. My doc thinks it's because of the Fludrocortisone. what do you all think. comments, advice, anything?~nancyHi - I have the same problem, but it is a new symptom. I find that I am constantly hungry, but gaining more weight than would be normal for what I'm eating. As I have a severe hyperadrenaline POTS condition, I am reading Forum postings about blood sugar problems and adrenaline swings, but my endocrinologist just "fired" me, stating that he simply doesn't understand my condition.My POTS doctor simply tells me to eat less, and follow a hypoglycemic diet. yes, I didn't gain weight until I got on Remeron to sleep, but for nine months Remeron didn't increase my weight. Now I have gained almost 50 lbs.Could somebody please help us?ElegiamoreI had to get off Remeron because of rapid weight gain. Also, Remeron is contraindicated (not recommended) for POTS, so I thought. It worsened my condition considerably. I even suspect it sent me "over the edge" with my POTS symptoms. Quote Link to comment Share on other sites More sharing options...
Elegiamore Posted January 27, 2009 Report Share Posted January 27, 2009 I had to get off Remeron because of rapid weight gain. Also, Remeron is contraindicated (not recommended) for POTS, so I thought. It worsened my condition considerably. I even suspect it sent me "over the edge" with my POTS symptoms.Gee - Remeron is recommended on Wikipedia for POTS (http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome), not that Wikipedia is a medical Bible or anything. I did not sleep at ALL until I finally got on Remeron plus other meds. It changed my life significantly. When I try to get off or cut down on the Remeron, I immediately get fibromyalgia symptoms back - I have CFS and Fibro also. But I never gained weight on it until the last 12 months.I'm sorry it worsened your POTS - I found that it had no effect on the main symptoms, but definitely helped me with brain fog in general; however, I am foggy from the Remeron hangover in the a.m.ANyone else with new weight gain out of proportion of your eating?Elegiamore Quote Link to comment Share on other sites More sharing options...
all4family Posted January 29, 2009 Report Share Posted January 29, 2009 Hi,After getting sick 5 years ago I began vomitting continuously throughout the day. I was on xanax. I was told I had anorexia due to rapid and exessive weight loss. After getting off the xanax, and discovering I could eat, and not throw up when laying down I began gaining weight back. I was scared because I had been told that if I kept losing weight at the rate I was, I could die. But the weight came back on almost as rapidly as it had come off. I read somewhere (maybe on here) that with ANS problem nothing is the norm. Even though most tend to have trouble keeping weight on I would think (and this is just my own thinking here.) It depends on how your nervous system is being effected, and how the drugs you are taking effect your nervous system. Because I have been on both extremes on this, and it seemed to center around the xanax for me. Or maybe just the not vomitting part because I was laying down. I still have to lay down to eat, but I gain weight very easily now. But I would rather have that problem than the constant vomitting! Anyways good luck with it, and I hope you find an answer.Suzy Quote Link to comment Share on other sites More sharing options...
momofsara Posted January 29, 2009 Report Share Posted January 29, 2009 Sara is very distressed over her weight gain. She doesnt eat excessively, and is nauseated much of the time, so its hard to understand. She gets so upset over the weight gain because its so much easier on her to get around when she is thinner. Also some doctors have told her its better for her condition to be less heavy. Its disturbing, but hard to do anything about. Exercise is not possible at this point, but we hope to have some things worked out soon for her to be on a beginning exercise program and also a good healthy diet. Just adding my 2 cents worth------Susan Quote Link to comment Share on other sites More sharing options...
yogini Posted January 29, 2009 Report Share Posted January 29, 2009 It's not uncommon to gain weight with POTS. I and many others have gained weight - but my weight gain is more like 10-15lbs. How much florinef are you taking? It is probably contributing and maybe you need to talk to your dr about lowering your dose. You might also have other things going on - have you had your thyroid checked or been to an endocrinologist? Quote Link to comment Share on other sites More sharing options...
Maxine Posted January 30, 2009 Report Share Posted January 30, 2009 Nancy, sorry your dealing with this, I know how frustrating this can be. MomofSara, Some people with chiari malformation or realted conditions have trouble with weight gain. Some people with these conditions have flattened pituitary, and pituitary disorders due to the lower brain/brain stem compression. this can throw hormones off, and cause weight gain quickly, and make it difficult to lose the weight.There are a couple of girls I met with chiari/chiari related conditions who have struggled with their weight, and had not much of a difference in their diets. Of course none of us are perfect, and if were having a good day we might eat something sweet, but a lot of us have days when we can barely eat, or get full very easily, and the overall calories are still below average.Some people with POTS start out losing quite a bit of weight on the initial "crash", but end up gaining it back---plus more-- This is what happened to me. Although it wasn't excessive, it was difficult to accept after being thin all of my life until POTs crash. I think hormone imbalances need to be investigated more closely with POTs patients, including thyroid checks at least twice a year. When I was diagnosed with hashmots thyroid it was caught early. I had gained about 10 to 15 pounds, but I was still a size 8. Through the years I slowly gained to a size 10 until I crashed with POTS. Then I lost weight rapidly, and went down to a size 6. My bone structure is bigger, so a size 6 was a bit unhealthy looking.Now I'm a size 12! And it seemed to be just like that---soooo fast. I'm not on any drugs right now to increase fluid volume. I didn't feel comfortable with it due to my CCI, and partially blocked spinal fluid flow. During my monthly cycle I get really terrible headaches, and I attribute it to the extra fluid build up affecting my CCI. The weight did come on rather quickly after taking wellbutrin. Wellbutrin was prescribed by Dr. Grubb. I take a small dose----100mg. SR once a day to control fatigue, and help raise my BP. This drug enabled me to eat again. Before wellbutrin I couldn't eat without pain. I notice a huge difference without this drug. I'm really not able to function at all without it. Even on wellbutrin my BP still gets low, so can you imagine without--- It's still has gotton down to 69/48 just a couple weeks ago. However, it's usually an average of 80 over something standing-----unless I push things too far, then I have to quickly sit------OR ELSE..........When people gain 50-60 pounds really fast I think this needs to be addressed as an urgent matter--------just as the same amount of weight loss. Docs tend to be more dismissive with woman hwo are EVEN slightly overweight-----writing thm off as healthy------------ROBUST---- Nancy---------I hope you can find some answers and feel better. Don't beat yourself up over it though.HUGS,Maxine :0) Quote Link to comment Share on other sites More sharing options...
delphicdragon Posted January 30, 2009 Report Share Posted January 30, 2009 When I was first diagnosed with low aldosterone (aka POTS) I was 140 pounds and rather healthy looking. The doctor put me on a high salt diet and told me to gain up to 150 because that might help the low blood pressure. Ever since I tried to gain weight, I have been losing it. I'm down to 128 now, trying to get up to 130/135. I am nauseous all the time and scared of gastroenterologists because I do not want a tube down my throat or in any other orifice. I was diagnosed with gastroparesis by a "prominent" autonomic specialist as an explanation for the nausea, which has been ongoing for the last 16 years or so.On florinef, I put on 5 pounds almost overnight, specifically in my hands and face. My rings wouldn't come off and I looked bloated. When I called to ask about this side effect, I was told to immediately get off the florinef as the rate at which I was gaining weight was bad for my heart, because it was just water weight. Sara Quote Link to comment Share on other sites More sharing options...
all4family Posted January 30, 2009 Report Share Posted January 30, 2009 When I was first diagnosed with low aldosterone (aka POTS) I was 140 pounds and rather healthy looking. The doctor put me on a high salt diet and told me to gain up to 150 because that might help the low blood pressure. Ever since I tried to gain weight, I have been losing it. I'm down to 128 now, trying to get up to 130/135. I am nauseous all the time and scared of gastroenterologists because I do not want a tube down my throat or in any other orifice. I was diagnosed with gastroparesis by a "prominent" autonomic specialist as an explanation for the nausea, which has been ongoing for the last 16 years or so.On florinef, I put on 5 pounds almost overnight, specifically in my hands and face. My rings wouldn't come off and I looked bloated. When I called to ask about this side effect, I was told to immediately get off the florinef as the rate at which I was gaining weight was bad for my heart, because it was just water weight. SaraI just had to say I am soooo glad I am not the only one afraid of the gastroenterologists. I have been avoiding that for 5 years now, and have a appointment for a EGD no sedation on February 17. I have been doing everything I can to think of a way to cancel without offending this Dr. as she is the one who did the right testing on me to get me this diagnoses. She knows I don't want to do it, and is trying real hard to get me in there. I have stopped vomitting again. So I don't really think I need to go. But I had stopped vomitting once before too. Sorry I know this wasn't about the subject. I hope you are able to get your weight back on. I know how that feels. I also know how the other end feels oh well.Suzy Quote Link to comment Share on other sites More sharing options...
shelby Posted January 30, 2009 Report Share Posted January 30, 2009 I have the weight problems too. I gained about 115 lbs all togther, which is a whole person and very frustrating. For me it is the inability to do anything physical, and Florinef. I hate how I look and find that meeting and talking to new people can be difficult because they look at your outside before they look at your inside. I know I am beautiful in both senses, but it is hard to feel that way sometimes when others view you as overweight and consider you lazy. You almost want to wear a sign that says "Can't Workout, Sick!!"So I know how you feel and I hope that things get better.Shelby Quote Link to comment Share on other sites More sharing options...
ana13sanchez Posted April 15, 2009 Report Share Posted April 15, 2009 WOW I am on the same situation! I have gained about 10-15 kgs since I got sick!!! I have tryed everything!! I eat just so little, it is true that I can't workout almost anything but I have never be this fat!!! I have been sad, angry, depressed, ..... but I just see that is not in my hands!! I have been on diet with many doctors, and they think I am not following it right, or think thant I am lazy.... some of them have gave me diets low on sugar and the only thing I get is a crisis.... please if someone have found the reason or a solution, let me know..... (I have been tested with an endocrinologist, she didn't found nothing wrong...) Quote Link to comment Share on other sites More sharing options...
gelann Posted April 16, 2009 Report Share Posted April 16, 2009 My daughter who has been diagnosed with dysautonomia was having problems keeping any food down. She was constantly vomiting and gaining weight. She is now following a gluten free diet and has lost weight and is keeping food down. She always wonders why none of the doctors suggested that she try a gluten free diet. She has stopped vomiting and no longer takes domperidone which was to help her stomach move the food more quickly. Quote Link to comment Share on other sites More sharing options...
futurehope Posted April 16, 2009 Report Share Posted April 16, 2009 Hello all, I am at a loss as to what to do. I don't eat much, small meals and I eat what I can because of constant nausea. I can't exercise at all right now. I haven't been able to for about 4 months. Even before that I noticed that my weight was rapidly going up. I have gained 60 lbs. in the past 6 months. 10 in the past 3 weeks! this is crazy and I seem to have no control. If anything I seem to see that people with POTS have trouble keeping weight on. My doc thinks it's because of the Fludrocortisone. what do you all think. comments, advice, anything?~nancyHi - I have the same problem, but it is a new symptom. I find that I am constantly hungry, but gaining more weight than would be normal for what I'm eating. As I have a severe hyperadrenaline POTS condition, I am reading Forum postings about blood sugar problems and adrenaline swings, but my endocrinologist just "fired" me, stating that he simply doesn't understand my condition.My POTS doctor simply tells me to eat less, and follow a hypoglycemic diet. yes, I didn't gain weight until I got on Remeron to sleep, but for nine months Remeron didn't increase my weight. Now I have gained almost 50 lbs.Could somebody please help us?ElegiamoreRemeron -- ugh!!!!! I was the fattest I ever was on that disgusting pill. They should outlaw antidepressants that make you so fat that you get depressed...LOL Quote Link to comment Share on other sites More sharing options...
BelieverEM Posted April 16, 2009 Report Share Posted April 16, 2009 I am shocked to hear of so many who are in the same situation!!! I, too, had been steadily gaining weight for over a year, despite very limited diet, and I couldn't stop no matter what I did! I have gained about 50 pounds total. No doctor would believe me, etc, and it seems like I was in the exact situation as the rest of you who responded. A few weeks ago, results came back from extensive bloodwork done by my integrative medicine MD, who found that my level of LEPTIN (which tells the body how many fat cells to make) is sky-high. Other results: I'm missing some vitamins etc (Vitamin D, Magnesium, etc), even though I take many of them as supplements. I still have high Myocardial and Gastric Parietal cell antibody levels. The test that measures the level of inflammation in the body (C4a Complement Protein) is supposed to be 0-940. Mine is 57300!!! And then the level of the thing that is meant to combat inflammation was too low to be detected. Logically, my immune system is depleted across the board. And then, he had re-done a blood panel on food allergy/sensitivity/intolerance. Almost half of 100 things tested for came back positive. To try and fix the Leptin level, I'm on a 9-step system detox, which includes an Amylose-free diet. He explained that when your system has too many toxins that it can't get rid of, it will store them in fat cells. It will keep making more and more fat cells in which to store these oxins unless it can get rid of them some other way. If anyone is interested in knowing more about this, feel free to email me. Thanks for helping me feel less alone!Erin Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted April 16, 2009 Report Share Posted April 16, 2009 See im kinda different.. im 5''11 and 121 pounds.. My POTS crash sent me down to 111 pounds but that was over a year ago.. I am on Lexapro and Birthcontrol and still cant gain weight, but however i always have a stomach because im always bloated.. Quote Link to comment Share on other sites More sharing options...
BelieverEM Posted April 16, 2009 Report Share Posted April 16, 2009 Dani, I only wish I had your problem!!! Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted April 16, 2009 Report Share Posted April 16, 2009 haha now i said that watch ill start gaining weight lol i have the worst luck ever Quote Link to comment Share on other sites More sharing options...
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