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Can't Stop Of Gaining Weight!


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After being a very fit person, I am with this disease, dealing with all the symptoms.... and gaining weight!! I have been sick for about 6 years, but since 3 years ago I can't stop of gaining weight, no matter what I eat, I have always eaten weel, taking care of what I eat, usually healthy things, almost nothing of animal fat... etc....but keep going up on weight.... now I am in the same situation before I was diagnosed with dysautonomia, nutriologist I have seen they simply can't belive I can't lower my weight, or don't belive I follow my diets..... I am now, 10 kgs overweight..... and it seems nobody can help me..... at least to understand why..... I wonder if this thing also comes from dysautonomia. I am thinking on see a bariatric doctor.... anybody with the same problem?...... :)

Now, I am taking efexor (18 mg), and concor (bisoprolol 1.25 mg).

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After being a very fit person, I am with this disease, dealing with all the symptoms.... and gaining weight!! I have been sick for about 6 years, but since 3 years ago I can't stop of gaining weight, no matter what I eat, I have always eaten weel, taking care of what I eat, usually healthy things, almost nothing of animal fat... etc....but keep going up on weight.... now I am in the same situation before I was diagnosed with dysautonomia, nutriologist I have seen they simply can't belive I can't lower my weight, or don't belive I follow my diets..... I am now, 10 kgs overweight..... and it seems nobody can help me..... at least to understand why..... I wonder if this thing also comes from dysautonomia. I am thinking on see a bariatric doctor.... anybody with the same problem?...... :)

only thing i would suggest is focusing on your calories in vs calories out. You may have already done this but figure out what your BMR(basic metabolic rate) is, you can use this calculator here. http://www.internetfitness.com/calculators/bmr.htm

Find out what your basic metabolic usage is, add in any exercise you might get. I would suggest eating 500 calories less per day than you use. Depending on your metabolism it may need to be less though.

So if your total BMR with exercise or whatever is 2000, try eating 1500 calories per day. I would focus more on how many calories you are getting vs what it is your actually eating.

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I was jus recently diagnosed with POTS. I am having the same problem. I do not have much of an appetite at all, I pretty much pick at food but I am still gaining weight. I am on 2 medications and I did read on them and I know that some side effects are weight gain, but I keep reading on here that most people with POTS have a problem trying to gain weight!

Could be a medication fighting against you maybe

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Hi,

What meds are you taking? I gained 50 lbs on mirapex. Sometimes we need to accept that the medications will be a priority. That doesn't mean that you should stop working out. It is o.k. Keep in touch with your doctor. Mirapex works for me. Although there are many different medications that can cause this. P.S. watch whAT YOU DRINK SUGAR, etc. Miriam

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I was jus recently diagnosed with POTS. I am having the same problem. I do not have much of an appetite at all, I pretty much pick at food but I am still gaining weight. I am on 2 medications and I did read on them and I know that some side effects are weight gain, but I keep reading on here that most people with POTS have a problem trying to gain weight!

Could be a medication fighting against you maybe

Hi another arizonan, there are a few of us here, so your not alone in arizona. Welcome!! A long time a go, they put me on dexamethazone (steriod) because they thought I had lupus. I too gained a ton, and I ate like a bird. Having first dropping down to 96 then gaining to 156 in months, I knew it wasn't what I was eating. Having been both thin and heavy, I believe people when they say they don't know why they have put on the pounds. For sure medications can do it, sometimes your hormones aren't right. I turned out to have PCOS/hyperinsulinemia. Steriods were like spraying gasoline on a hot fire. So what meds did they put you on and why?

Where here did you get your tilt table done? How did you get to the point that they decided you should have one? It's hard to find the right doctors here in arizona.

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I was jus recently diagnosed with POTS. I am having the same problem. I do not have much of an appetite at all, I pretty much pick at food but I am still gaining weight. I am on 2 medications and I did read on them and I know that some side effects are weight gain, but I keep reading on here that most people with POTS have a problem trying to gain weight!

Could be a medication fighting against you maybe

Hi another arizonan, there are a few of us here, so your not alone in arizona. Welcome!! A long time a go, they put me on dexamethazone (steriod) because they thought I had lupus. I too gained a ton, and I ate like a bird. Having first dropping down to 96 then gaining to 156 in months, I knew it wasn't what I was eating. Having been both thin and heavy, I believe people when they say they don't know why they have put on the pounds. For sure medications can do it, sometimes your hormones aren't right. I turned out to have PCOS/hyperinsulinemia. Steriods were like spraying gasoline on a hot fire. So what meds did they put you on and why?

Where here did you get your tilt table done? How did you get to the point that they decided you should have one? It's hard to find the right doctors here in arizona.

I got mine done at Chandler Regional Hospital. I went through 2 cardiologists and my 2nd scheduled it and about 15 mnutes into it he looked at the tech and said POTS....I had no idea what he was talking about, or that he was talking about me for that matter...brain fog had already set in haha....I was put on Topiramate for supposed migraines by my neuro and now trying Bystolic for POTS symptoms from my cardio

Where do you live?

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Could be a medication fighting against you maybe

I got mine done at Chandler Regional Hospital. I went through 2 cardiologists and my 2nd scheduled it and about 15 mnutes into it he looked at the tech and said POTS....I had no idea what he was talking about, or that he was talking about me for that matter...brain fog had already set in haha....I was put on Topiramate for supposed migraines by my neuro and now trying Bystolic for POTS symptoms from my cardio

Actually not to far from chandler regional, south east of the ocotillo area. I was wondering if bystolic might work better for me. I've been on the increased dosage of inderal for 6 wks, ever since my tilt table was done. I'm still struggling with supine hypotension and standing hypertension, heart rate is getting as high, but is still hitting the lows when I'm sleeping. Love to know who your cardios were.

Do you know how to pm yet? (private message someone on the forum)

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Maybe it is something here in AZ!! I was overweight until I first got sick, then I couldn't stop losing weight to the point they told me I had anorexia, due to the rapid loss. But I was getting very sick on medications. Then once I was able to keep food down, I not only gained I gained rapidly, and a lot. The last doctor I spoke to said that I was "eating myself to death". But the doctor who diagnosed me with pots seen my extreme weight changes, and I think related it to the dysmotility. (though I would think that if you can't digest as well that would make weight gain harder, but who knows. ) And I don't eat a lot more then before. In fact I feel very sick when I don't eat. So I feel stuck here with it, but at least it is better then vomiting all the time. When I tried to tell the doctor that told me I was "eating myself to death" that I fill up quickly he said that you can't fill up too quickly, otherwise you wouldn't have this problem. (even though I have proof of my slow digestion. ) I think that if you are thin it is easy to believe it is just a fast metabolism, but if you are overweight then it is because you just eat too much!!! UUUUGGGGHHHHH!!!! Sorry you are experiencing this!

Suzy

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I have been told by doctors based upon symptoms that I have low stomach acid, and could possibly benefit from betaine HCL with pepsin. So I tried a low dose right after a meal with meat. It worked. Many irritating symptoms that are not POTS/dysautonomia related were reduced! I've just been doing it a few days so i don't know about weight loss, but the betaine HCL has helped tremendously with hunger, bloating, digestion issues, and I don't crave eating right after eating.

Before taking the betaine HCl, I did do some research and found that regulating the stomach HCl is an autonomic function somehow tied into the vegas nerve??? I'm not sure what all that is about - I just found it curious that HCl production is dependent in some ways on the autonomic system.

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  • 9 months later...
After being a very fit person, I am with this disease, dealing with all the symptoms.... and gaining weight!! I have been sick for about 6 years, but since 3 years ago I can't stop of gaining weight, no matter what I eat, I have always eaten weel, taking care of what I eat, usually healthy things, almost nothing of animal fat... etc....but keep going up on weight.... now I am in the same situation before I was diagnosed with dysautonomia, nutriologist I have seen they simply can't belive I can't lower my weight, or don't belive I follow my diets..... I am now, 10 kgs overweight..... and it seems nobody can help me..... at least to understand why..... I wonder if this thing also comes from dysautonomia. I am thinking on see a bariatric doctor.... anybody with the same problem?...... :)

Now, I am taking efexor (18 mg), and concor (bisoprolol 1.25 mg).

Ana,

I can REALLY relate to your post (that I just read). I am on Metoprolol, and so much of my added weight is water weight! I am also doing research into bariatric surgery (duodonal switch). I try to get to the gym three times per week, but have to use the weights and recombant (sp) machines as the treadmill nearly kills me. People keep saying "Count your calories," "watch the sugar," "watch the carbs," etc. like it's MY fault. Everyone who knows me tells me I eat like a bird.

Caron

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My cardio seems to be blaming all my current symptoms on my weight. I went from a perfectly healthy weight of 56kg (8st 11lb / 123 pounds) to my current 87kg (13st 10lb / 192 pounds).

I basically gained 2 pounds a month steadily for 3 years from the time I started taking Paroxetine. In the autumn I had a huge push at dieting and managed to loose a bit of weight but I got a sinus infection at Christmas and my weight shot back up again.

Flop

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This is somewhat debatable science/fad diet theology but it would explain your weight gain if your POTS was the sudden onset type:

Cortisol and weight gain

If you are suddenly sent into a perpetual fight or flight mode (like POTS does) and your body compensated by pumping out the cortisol you would be getting "pseudo-Cushing's" weight gain/blood sugar issues. My Cortisol consistently sits at the high-normal threshold, but it does not increase upon stimulation like it should, so it is too high for Addison's but doesn't skyrocket like Cushing's. I guess my adrenals just aren't fried yet. I have kept the same body weight since puberty, except for after having my children. Then it came right back down. My BMI set point is stuck, regardless of what I eat. Even now my weight is the same, unless I don't take my dDAVP, then I can lose 4-8 pounds of water in a day.

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I gained 45 pounds in 3 months...after I'd had POTS for a couple years. I know via my records my weight was stable for at least 7 years prior.

The only thing I changed was my BCP - the pill to Mirena IUD so I'm finally just going to go back to the pill and remove the IUD. I've read online a lot of women have weight gain from it so I'm hoping it's part of the problem. I also have to be very careful with calories after I get it out. But a lot of women said they ate well and exercised with Mirena and the weight gain kept coming.

Silly hormones. :o There is a side effect of 'weight gain' and my current doctor at least thinks it could be playing a part as even though it's a rare side effect, someone has to have it, right?

I also started a Beta Blocker in January, but I think that only added a few pounds (5?) and water weight.

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Church says Amen!!!! There is SOMETHING CRAZY about POTS.

I have lost 13 pounds in one week, then gained it the next. I have lost or gained as much as 4.5 pounds in one day.

The one thing that I find irritating is that by all nutrition sites and scientific calorie calculations, they tell me to eat 2000 kcal per day. I gain weight like a tornado if I go above 1300 and that is with daily exercise, 8 hours of work each day AND I had a metabolism measurement by a nutritionist that said I burn 1700 kcals per day if lying in bed.

Believe me, I have tried 2000 kcals a day of healthy food and I was up a pound every day. Despite what they say, it is not about calories in vs calories burned- that is a bunch of bull crap. It is a dynamic process and there isn't anyone who can figure it out. Add POTS and it is an impossible puzzle.

We have enough struggles, we don't need this one- but here it is.

Sorry for the rage and the capital letters. I'm single and Valentines whole frikin' week (when did it become a whole frikin' week?!! Its supposed to be a DAY) puts me in a bad mood. People prance around work with their crappy flowers like they've been chosen to have tea with the Queen. Have they had a good look at their spouse/boyfriend because I have and I wouldn't touch that mess with a 10 foot pole....just sayin'....

OK I feel better now. Just 3 more days to go....

Kits

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I've had the opposite problem with nutritionists and weight. They tell me I should eat about 1500-1550 calories a day for my age and activity level, but I eat about 1650 and stay the same or lose weight. I'm slightly underweight as it is. Trouble is, I'm just not hungry enough to eat more than my 1650, and sometimes that's a struggle! I'm sure there are others who just aren't hungry, or at least nothing sounds good to them, too. What do you folks do?

Cheers,

Jana

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When I've been thin (a lot of my life), I was told I needed to gain weight. When I've been unable to eat, I was told to eat. After I explained that I was unable to eat, a rude doctor tested me for anorexia nervosa (honestly, he had a lot of more reasonable things to test for which I haven't been tested for yet; apparently, the only and exclusionary criterion for medical testing is lack of necessity).

Any other time, people tell me to lose weight.

When I was really sick and couldn't eat properly for months, I resolved to eat as much as I could when I could because I had been so worried about starving to death and not having enough body fat to burn. After the worst of it, it hurt terribly to eat to capacity and beyond but I did even though I liked certain things about being thinner. I couldn't eat for a time the next year too but I did put on 30 pounds over two years. Here and there, I really can't eat because of one or another disease problem and I'm glad I have the extra weight at those times. I feel better a little heavier.

But I hate the comments and hate the fact that people say I'd be all cured if I were thinner; I keep repeating that I was sickest at my thinnest, could not be cured at that time or subsequently by weight loss, and that I gained weight on purpose. I also mention that at the rate I'm going, I'm going to be so sensitive to every food there is that I should try to enjoy any food I can while I can. I'm still waiting on wheat sensitivity ;) but I've developed almost every other possible one.

The easiest thing for me to have done would have been not to eat when it hurt but I couldn't imagine becoming emaciated and more ill from being thin (and being suspected of having anorexia nervosa after I denied it) if it were at all preventable.

The irony of course is that any nutritionist would feel completely qualified to tell us what we should eat and what weight is ideal for any of us at any particular time without knowing the first thing about this disease -- but for regulation of any other body system, there are specialists who will refuse to treat us.

I don't know what the climate is like in Mauritania, but there, it seems you could have two groups of admiring friends who appreciate one weight or the other you could cycle through. That seems socially ideal for people who can be too thin or overweight at different times:

http://news.bbc.co.uk/2/hi/3429903.stm

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But I hate the comments and hate the fact that people say I'd be all cured if I were thinner; I keep repeating that I was sickest at my thinnest, could not be cured at that time or subsequently by weight loss, and that I gained weight on purpose. I also mention that at the rate I'm going, I'm going to be so sensitive to every food there is that I should try to enjoy any food I can while I can. I'm still waiting on wheat sensitivity ;) but I've developed almost every other possible one.

Well, be careful what you 'wish' for...my Celiac Disease markers came back positive and I'm trying, but it's so.difficult.for.me. I guess I should just start eating mostly fruits/veggies and some protein as I'm not happy with my weight. I am so sad about it.

But I agree. If you are not doing anything to cause it, they should test you for what you think might be the issue...and not accusing people of starving themselves (too thin) or overeating (overweight). I'm sure I look like I eat my fair share of ice cream and donuts. I don't.

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First, be sure to give yourself full credit for what you do accomplish. Chances are you deserve a gold (or sodium) medal already! You're among an elite group of champions here. Some skinny, some fat, a few passed out track-side after running the course backward in a brain fog haze... but each giving it 110%... even when "extra effort" means thoroughly relaxing oneself (in the face of an oft overstimulated system)! :)

I suppose we've got general impediments to weight loss like fatigue, exercise-intolerance or whatever else tends to plague us. Should also screen for other/related conditions like thyroid/adrenal stuff or depression... and of course med side-effects. But beyond all that, it seems plausible that an autonomic dysfunction could entail disruption of any number of key "low level" metabolic things. Maybe that could skew us chronically one way or the other, just like some of our bodies get mis-calibrated for temperature. Consider how many different things come together via the hypothalamus (interconnecting, informing & empowering the autonomic nervous, central nervous & endocrine systems). I wouldn't know specific suspects or what is realistic to consider, but the notion seems reasonable and I can ramble about some of it!

One thing comes to mind that is mentioned in research for dysautonomias. We tend to show relative-hypoglycemic response (an unusually rapid drop in blood glucose). This seems to support the notion that at least one very key metabolic response is getting goofed for some of us. Not only might this undermine the body's energy supply at inopportune moments, but it seems that coordination and cascading of other key responses that are not as easily measured or understood could just as well be thrown off.

If glucose chronically drops more rapidly than in "normals", it kind of implies that the conversion of fat into glucose is "blunted" in an ongoing or ill-timed manner. On the other hand, "sympathetic stimulation" which many of us get too much of, is generally associated with freeing up energy stores. But who knows, maybe chronic over-stimulation leads to desensitization to this signal for some (like in the "fat-burning" adrenergic receptors)? Obviously I'm just speculating (perhaps unrealistic or misguided notions here).

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  • 5 months later...
After being a very fit person, I am with this disease, dealing with all the symptoms.... and gaining weight!! I have been sick for about 6 years, but since 3 years ago I can't stop of gaining weight, no matter what I eat, I have always eaten weel, taking care of what I eat, usually healthy things, almost nothing of animal fat... etc....but keep going up on weight.... now I am in the same situation before I was diagnosed with dysautonomia, nutriologist I have seen they simply can't belive I can't lower my weight, or don't belive I follow my diets..... I am now, 10 kgs overweight..... and it seems nobody can help me..... at least to understand why..... I wonder if this thing also comes from dysautonomia. I am thinking on see a bariatric doctor.... anybody with the same problem?...... -_-

Now, I am taking efexor (18 mg), and concor (bisoprolol 1.25 mg).

I have had the same problem... and this October will be having bariatric surgery. I am hoping to see marvelous results that will have me so much healthier! HAs anyone else on here had bariatric? Can you let me know how it went?

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