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Weight change due to dysautonomia  

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Hi,

I voted that I lost weight. I have lost about 30 pounds since being diagnosed in July 2011 (4 months). I am not very tall, 5'3 and did weight 138. A little overweight for my height but I was okay with it. I had a lot of muscle an am very large chested (34 E) so even in the 130's I didn't really feel overweight because of my curvy type body. When I was weighed in the hospital last week I weighed 108 pounds. I was not shocked that I had lost weight, but was surprised by the amount. And my muscles (especially in my legs) has just deteriorated to practically nothing.

My biggest struggle is that for 3 months now I have ZERO appetite. It is like there is nothing attached to my stomach from my brain to carry that hunger signal. I could easily go for days and not eat a thing if it wasn't for my family making sure that I have something. I drink a lot of fluid (alternate between water and Powerade) throughout the day. I drink 1 or 2 protein shakes and sometimes the kids will make me a smoothie. My husband went so far last week to buy me baby food but I haven't been brave enough to try it yet. I KNOW that I NEED to eat to live and get stronger, but even thinking of eating makes me sick and I am just never, ever hungry. Does anyone else deal with this? What works for you? Do you just eat even though the the thought makes you nauseous, I am getting calories from the protein shakes but not what I should be getting I am sure. Thanks!

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I'm brand new here and as soon as I feel up to it I'll write an intro post about myself or something. My answer to this is complicated. I only JUST got the diagnosis of POTS and I'm not totally sure when my symptoms started. I was diagnosed with sinus tachycardia a few years ago and had problems with it before then. I also have severe gastroparesis (to the point that I am dependent on IV nutrition) and I've been sick with the gastroparesis for about a year. Of course the Gastroparesis and POTS are undoubtedly connected but I'm not sure which came first or even totally sure when either one started. I can say in the last year I have lost 70lbs. And I've battled severe malnutrition big time from the gastroparesis and from a severe C. Diff infection that happened a little over a year ago. I'm not sure if the severe dizziness (which was my first major symptom that lead my GI to suspect POTS) came from malnutrition (I had some scary low levels of multiple B vitamins) or if it was the other way around but I do know that around the time I became for severely dizzy (and it's only gotten worse even though my nutrition is way better) I started losing weight even faster. So I'm kind of a bit of mystery but for me, mega weight loss... likely more from the gastroparesis than the POTS though. But then again the two are probably so completely intertwined that it's hard to say.

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well, I was 130 when this all started. For a while I stayed about the same. Then after I got really sick I was down to 100 pounds and it was really hard on my body. After getting some things in order and after my pots has toned down, I'm back up to 120, which is pretty much good enough for me!

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  • 2 months later...

At my worst, my BMI was down to 11. Anorexia has a way of doing that. BMI's up to 17 now and that's about as high as it will probably get. When my weight gets higher than this, my body seems to struggle to function and the POTS symptoms get much worse. Same when BMI gets too low, but slightly different symptoms

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I've lost weight and I spend the school day in a wheelchair and many days I'm too weak to stand up and be acitve like i used to. I was already underweight but the loss of appetite is making it hard to maintain my weight where it is now and I've had a lot of bad side effects from my meds that have caused me to get sick a lot of the time! :(

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I gained about 10 pounds, mostly over time--- I was super active before, and always had a ton of muscle, which kept me fairly lean. However, I did have a horrible period where the doc I was seeing did an elimination diet and even eating 3,000 calories a day I was still losing weight like crazy. I dropped like 23 pounds in a little over a month and was only a pound or two from being underweight. However, I also had my highest weight up 20 pounds from my regular weight (and 30-35 from my pre-POTS weight). Turned out that I was in the early stages of heart failure, so it came off fairly quickly. I still am holding on to my 5 pounds of less active weight and my 5 pounds of b.b. weight though. My body is actually really good about trying to stay close to its "set point" weight wise.

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I've lost 10 pounds, and my beta blocker isn't helping me gain it back, like I thought it would. I'm really rarely hungry, (nauseated all the time), but I force myself to eat small amounts, but drinking all the time doesn't help with that either. I'm back to the weight I was when I first was married :rolleyes: . That was many moons ago. Gained some through menopause, but then lost it again :mellow: I'm 105 at 5' 5'' ^_^

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  • 4 months later...
  • 1 month later...

I would think a lot of the meds we all take could cause weight gain. And those with severe nausea as a primary symptom would lose weight.

I, so far, (six months into pots) have stayed the same-- though bloating is terrible! I even took a pregnancy test and didn't believe the scale that I haven't gained weight... Ugh!

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I agree with you westernmass, the bloating is awful. I've also done pregnancy tests since diagnosis "just in case."

I think my issue is mostly with Zoloft. I can't seem to lost weight or get rid of the bloat even though I'm eating healthy, never have soda, have cut down on sugar, and am exercising 5-6 days a week for 30 mins to 1 hour 30 minutes. Despite having done this for several weeks, the scale hasn't budged- up or down- in about 3 weeks. It's driving me crazy! I'm actually going to lower my dose of Zoloft to fight it. Here's hoping.

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  • 3 weeks later...

Developed POTS after baby #4. Less active and really difficult to lose baby weight.

Brye

I believe I also developed POTS during my pregnancy. After delivery, I dropped all my baby weight plus a few pounds within 6 weeks. But about 2 years later, I gained 20 lbs in 3 months although no change in diet or lifestyle, and my belly looks like I'm 5-6 months pregnant again. I have found the abdominal binder helps my symptoms, so I'm wondering if I have 20 lbs of blood pooling in my belly.

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I voted that I fluctuate. I gain weight and then have a hyper surge and lose about 10 lbs. in a week from nausea and associated GI symptoms. I haven't gained an ounce on the beta blocker, which I thought I might, but have noticed that without the severe surges causing these periods of weight loss my weight has stayed more constant so I have been able to control it more myself.

I have gained about 20 lbs, overall, since I got POTS but when I exercise it comes off as it should. I'm 5'10 so that's not a lot of weight on my frame, but it's more than I'm comfortable gaining. My husband swears 10 lbs of it is water from the salt because he only notices it in my fingers and my face. Someone told me the other day "you look like you've lost weight but your face is fat." Gee, thanks, I think. My clothes all still fit the same since before, so it's just weird.

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  • 3 months later...

I was just wondering if there was any relation to the weight gain or lose and the type of POTS that a person has. For example do people with hyper POTS lose more than others etc?

Ginger, I don't know that anyone has addressed hyper-pots and weight loss directly.

With a NE of over 1400...Hyper-hyper pots, I think you've made a good point, even if you don't know you've made it, Smile.

I can't seem to eat enough, or even to want to eat enough. Nausea, and just feeling too tired to eat play a part, but there has to be another element. I think that other element is hyper pots, or in my case a very high NE, over 1400.

My husband and I eat out most nights, (no shopping, no preparing, no clean up) all which require energy...So this is about energy and economics. I have no energy, but we have the economics, which I'm grateful for.

Many times I opt for good steaks and pasta. I'm so hungry when I finally eat a real meal, people serving and working in the restaurant comment. (They should not, but they think it's a compliment.)

I order a steak, a salad and a side of pasta with a vegetable. And eat it all. And then eat almost nothing for days, because it's sickening to even think of eating.

I know it is awful for so many to worry about calories and the scale...I remind people that eating should be a pleasure, and excluding excess, enjoy! Sincerely. It's so rarely that I have an appetite and even want to think about eating and when I do it's more about nutrition and finally eating.

So if you enjoy eating I hope you will continue to get pleasure from it. If you struggle with a few extra pounds you are with the vast majority of well people.

I guess I'm just saying you can't enjoy the joy of eating until it's gone.

For me the joy is rare, very rare, and it's because of hyper pots.

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My pots started when I was pregnant. I weighed 140. I only gained 6 lbs during my pregnancy. By my postpardum appt at 6 weeks, I weighed 103. I'm 5 6 so I was really sickly looking. I fluctuated between 103 and 109 for 3 years. A year ago I started gaining because I would force myself to regardless of the nausea. I'm at 122 now. Lower than what I should be but better than before.

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I've lost weight. Over three years ago I started a "diet" so to speak (really it was just eating healthy and exercising) and I used to ride my bicycle nine miles a day 4-6 times a week. I loved it. I lost about 12 lbs. Then I was diagnosed 3+ years ago and I've been losing weight ever since. Not rapidly mind you, but I've lost about 25-30 lbs. total over the last three years. I'm not complaining too much as I am down to a satisfying weight for me. I am a bit concerned though, because I have done nothing purposely to lose the weight. I've tried exercising, but that is a hit or a miss, mostly a miss as of late. As a result of being nauseous much of the time and having little to no appetite, I have to force myself to eat. I eat a yogurt in the am, something little at lunch and eat dinner that the hubby makes at night. I have also found that I can only eat about 1/4 of the amount of food that I used to eat. I get full very easily and don't feel all that well after a big meal. I'm sure that is why I am steadily losing weight. Dr. doesn't seem too concerned as I am still at a healthy weight for my age and height (43, almost 5'9", 138). 3+ years ago I was up to 166 and a size 12, now I'm down to a size 6-8. Again, not complaining too much.

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When this first began, I had such problems eating. It hurt to eat. Then I lost my appetite and was so sick the thought of food made me ill. I am 5'7" and was down to 100 lbs. I was trying to explain all of the odd (now know POTS) symptoms and the doctors would just say it was acid reflux or anorexia. It has taken over a year but I am up to 115. But everytime I have a flare up, I get so sick I can't eat and lose more. The highest I have gotten is 118. My goal is to hit 120. I was really close this month but am in the middle of a bad spell so I am now losing again.

If I ever can I would like to gain extra weight so I can have it for illness. Being underweight is really dangerous and makes symptoms so much worse.

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  • 4 months later...

I used to be able to function/run/bike/tennis in hot weather. But i can barely move in it now,

so naturally i tubbed up.

Im learning to eat correctly: sweet potatoes, bananas, turkey, egg whites, cashews, avacadoes so im targeting

back to my correct weight.

I drink no soda, and just a little decaf.

I also drink a good bit of water and i walk a slow hour six days a week.

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Up and down for me. When I was first diagnosed I had lost 17kg ...then gained it all back, then last year I lost 10kg in a very short time (four weeks) when my GI issues really flared up. Now I am about 20kg heavier than my optimal weight. It is very distressing and I am sure exacerbates my problems. I particularly hate the wardrobe issues with all the fluctuations. I have about eight pairs of jeans and at present only two fit! The others will fit again, it seems to be a random fluctuation with me. I never know when my digestive tract is going to cause me grief.

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