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Since I had a surge in POTS symptoms this year I've also had inexplicable weight gain. I haven't changed my eating habits and I eat fairly minimally, and although exercise is sometimes dicey, I've actually been able to exercise MORE in the past four months or so (since starting medication) than I was able to before - yet my weight continues to creep up. I do take a beta blocker which can sometimes cause weight gain, but I started gaining weight when my POTS symptoms increased, which was months before I started taking the BB - and I take a very low dose. I assumed this weight gain was unrelated to POTS and that I just needed to somehow eat even less and exercise even more, but then I read that POTS can be triggered by poor adrenal function, and I know adrenal fatigue can cause weight gain... anyway, does anyone know anything about this? Does ANS affect metabolism at all, or are they unrelated creatures?

Thanks!

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I don't know why, but I've gained about 50 lbs since I first got POTS, 30 of it in the past six months when I started the beta blocker. For a while I thought I was the only POTS person who wasn't skinny.

My doctors keep focusing on my weight, but I feel that the weight is a symptom, not the cause of my problems.

Good luck

Angela

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I think that when you first get ill and are unable to do the level of activity that you used to do your body seems to switch into a "save-energy" mode. It is so easy to see the pounds creep on, I blamed my weight gain on my SSRI (they are known to cause increase in appetite) but I now think I was also eating the wrong sort of food for my metabolism. Making some initial changes to my diet (increasing fat, protein and fruit/veg, decreasing wheat especially pasta) has stabilised my weight. Rather than gaining 1-2 pounds per month which I had done for 2 years solidly, I have managed to maintain my weight for 3 months. The even better news is that I think I am gaining muscle weight (am doing gentle lying-down toning exercises), my body fat percentage has decreased and my waistline and face are noticeably slimmer.

Flop

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My weight fluctuates by about 20 pounds, and I believe it is because of dysautonomia. Sometimes I gain weight and can't do much about it, and then other times that I lose weight and can't do anything about it. The amount and type of food I eat doesn't seem to make a difference. If I'm gaining weight, I can watch my diet and eat only what I need, but I still gain. If I'm losing weight, I can eat all the ice cream I want and still lose weight.

There was one time in particular that I was losing weight quickly, and I tried everything I could to stop it. I ate a lot of high calorie foods (ice cream, peanut butter, avacado, whole milk, whole milk yogurt, etc), but still kept losing weight. I would eat 3 meals a day, and I would eat 1,000 calorie snacks in between those meals! No one should lose weight on 4,000 calories a day, but I did.

My weight loss/gain isn't always extreme. Usually the weight comes and goes slowly. I don't know why I gain/lose weight, but doctors think it is related to dysautonomia.

Rachel

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I reached my heighest weight ever due to, at the time, the "unknown little demon" that was wrecking havoc on my body (I gained 80 lbs in a little over a year). When I finally started getting some answers, I knew I had to do something to get the weight off so I joined Weight Watchers in February. I like the plan because it doesn't require any special foods and the great online tools that I can use. Without much activity at all I have been able to lose 30 lbs... a little more than a pound a week. My goal is to lose about 50 more pounds, and I know it will be tough because of the medicines that want to fight against weight loss and my lack of activity, but I am going to persevere!!

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I lost 25 pounds at first, then after being put on wellbutrin I gained back all my weight plus 15 pounds more, and have since lost some of that.

Beta blockers are also on my list of meds, and those can make you gain weight also. Another thing, I think this disorder can mess with your metabolism--------------------- :)

Avoiding refined carbs, and trying to move more helps. However, moving is hard with my problems. Aquatic therapy can be helpful, and I'm hoping to start that again, once I get through some rough patches.

I know a food diary can be helpful also. Sometimes we don't realize that eating a little bit of this, and a little bit of that adds up. Especially little bites of sweets, or junk food. If I have either, I try to keep it to that ONE little bite--- ;)

Maxine :0)

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There was one time in particular that I was losing weight quickly, and I tried everything I could to stop it. I ate a lot of high calorie foods (ice cream, peanut butter, avacado, whole milk, whole milk yogurt, etc), but still kept losing weight. I would eat 3 meals a day, and I would eat 1,000 calorie snacks in between those meals! No one should lose weight on 4,000 calories a day, but I did.

Rachel, same thing happened to me! I was so freaked out by it...I'm pretty sure I figured out why (in my case) this happened. Well, it was before I was on any treatment for POTS or my fast heart rate and my rates were high literally ALL the time. Sitting would be like 90 (as opposed to 60-70 now) and standing/walking was anywhere from 120-200. I made a 15 minute walk to and from class multiple times a day which was a HUGE huge struggle! Its hard being sick and keeping up with the same level of activity as before you were sick...But because it was school and with all of my committments, I had to. So as much as I wanted to just collapse I didn't really have a choice. The way I felt after taking a 15 minute walk to class was like I had run a 25 mile marathon..My body was obviously burning up calories because of all that work so its pretty logical that this would reflect on my weight. Maybe your case is similar?

Once I started on beta-blockers I gained weight. I've gained about 10lbs in 5 months on them, and ironically, my diet changed for the better and I started some exercises. Oh well, I needed a few pounds anyways. Thankfully, I've been at a steady weight for awhile now, so I'm hoping my body has gotten used to the lower rates from the beta and my metabolism has adjusted.

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I'm also one of the people that loses weight when my POTS is bad, despite an increase in appetite and craving calorie rich foods.

Once I started on medications, my weight steadily increased and I've found it hard to eat a normal amount of food after many years of overeating whilst being very thin. Of course, age also starts to make it harder to lose or maintain weight and, like everyone else, I really need to exercise a bit to stop my weight just going up and up.

I wonder if my rate of metabolism has decreased on all these medications whilst steroids/salt loading increase appetite.

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Carly, it is interesting that the same thing happened to you. It just doesn't make sense that one could consume so many calories, but still lose weight! My situation was a little different than yours in terms of heart rate and physical activity. Years ago my hr was always 120 resting, sometimes higher. Exercise would quickly bring it to 200. During this time, though, my weight was stable.

My heart rate has continued to drop over the years (without using meds). At the time I was losing so much weight my hr would have been about 60 or 70 resting, about 120 walking, and 150 standing still. On a good day I could walk about 1/10th of a mile, so I was hardly able to exercise at all. I shouldn't have needed even close to 4,000 calories a day!!! It's one of those things that always puzzles me!

Rachel

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Hi,

I too am one of those you seems to get a big increase in weight and then a big decrease and I am now in the midst of another big increase, I have started to decrease slightly. I see some correlation with meds, not a lot with diet or activity level. I think some of it is the actual whatever is going on with my body.

Not fun! And drs. do not seem to understand that is not always within our control etc... But that's another story.

Not to mention that for my height and weight the projected highest amount that I should weigh to have a healthy weight is actually what I weighed after my appendectomy and not eating for two weeks. So, from that I know that is NOT my healthy weight! Also, I was a freshman in high school, in braces, and had also had oral surgeries that I could not eat much after. So, that is not where I want to be weight wise...

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When my pots symptoms got bad I started the year out at a healthy 165 pounds and ended it at an obese 217 pounds without a change of diet. My activity level was less since I would spend days sleeping. I now ping pong around 200 and 209. I have a strange story about losing weight: years ago I lost 12 pounds in one day and it did not come back. I lost it when 25 years ago when I was in the Marines and was transferred to Japan. I got on the plane at 165 and a day later I weighed in at 153. I ate junk food on the flight and during layovers. Looking back I know I had pots but a milder form than now.

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Do you know if hypovolemia is associated with decreased weight or not? I have noticed I've lost weight (down to 137 lbs) used to be like 160's I think. And I am eating more! Just wondering I haven't had my blood volume checked, but started losing weight around my initial episode.

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JBrian, I'm pretty sure its not the loss of blood volume that makes people with pots lose weight. Our blood does not account for much of our body weight. The weight loss/gain has to do with the deregulation of our metabolisms I think. That is the most logical guess, but someone correct me if I'm wrong.

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Hi,

I don't think there is anything out there to my knowledge that says weight loss leads to low blood volume or that hypovolemia can lead to weight loss. If anything you would maybe see hypovolemia with a rather quick weight gain, due to extra body tissue needing blood, and your body not keeping up quick enough. I think this is seen some with pregnancy?

Hypovolemia can have many causes, just as weight loss or gain can. For some the weight loss/gain can be due to meds, change in diet, increase in fluids, increase/decrease in activity etc. Also, if your adrenaline is excessive or your HR is up frequently you can be burning more calories etc.

There are so many possible reasons behind all of it. There is not one straightforward answer for much of anything. So, all one can do is try things see if it works or doesn't and then try the next thing. There is not an answer for everything. You can drive yourself nuts looking for an answer to everything. :)

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Guest tearose

My weight has remained constant, unless I have relapsed with gastroparesis. I may loose 5-8 lbs in a week if I am sick.

My digestion issues are GERD and periodic gastroparesis.

I think it is my % of body fat is what is more fluctuating. It must me related to the type and amount of exercise I am able to do.

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