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Mandi

Pots And Weight Gain?

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I had Roux-N-Y bypass in 2008 and got down to 190 prior to getting ill. Now after almost 3 years after POTS symptoms started in 2010 I am up 50 lbs. I am really struggling with this. I have been on total disability since symptoms started and find it very difficult to do much. If I vaccuum my apartment (moved from 2 story townhouse because i'd fall down the stairs) I can't do much else that day. Basically grocery shopping1 day, landry one day, vaccuum 1 day, etc. If I do more than that I litterally tip over. I have had a lot of vertigo with the POTS. On meclazine and it helps only a little.

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I think dysautonomia, whatever the origin, does weird things to weight. I have not been eating any more or any less than usual and have gained 12 pounds in the past couple of months. My weight fluctuates from week to week by 5-6 pounds but, this weight gain has been consistent. Last year, I lost about 20 pounds - no apparent reason. I have a range of clothing from small sizes to x-tra large - I asked my physician about the weight fluctuations and he has no explanation nor is he very concerned so, I just live with it.

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I gained about fifteen pounds from being sedentary after we got my GI issues under control. Then the real weight gain came when I went on long term prednisone...that cost me about 35 lbs. But I still can't get active enough to get my metabolism revved back up to get rid of that weight and I'm on a 1200 calorie diet! Ugh! Mentally this has been my biggest challenge ...yes that's right, my vanity is the thing that has been hardest to give up. :(

I can't eat less or I have hypoglycemic issues which just set off a chain reaction of POTS and migraines. It's become a vicious cycle and one I'm really struggling with.

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That has been one of the hardest things for me to deal with. I worked so hard to loose that weight and now I am stuck. I used to walk a couple miles a day and now I have a hard time walking around my apartment some days. I have had people tell me to go up and down the stairs in my building but more than 2 trips up to my second floor apartment and I am falling over. I used to not eat much at all, but when I don't eat my POTS symptoms get a lot worse.

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If I do the stairs in my house more than once within 5 minutes I'm in trouble. I try to walk the dog every day that I am physically able but she often has to settle for being let out in the yard these days...poor pup has been as affected by the lifestyle change as much I have. But back to the real topic...I also have considered trying something like glucomannan (fiber supplement found in these new age diet pills) . It is supposed to make you feel full and therefore eat les bu t I am afraid of upsetting the balance we have found with my GI tract and I'm also not sure what that might do to my hypoglycemic moments (cause I definitely don't want more of them) . The docs tell me to eat less...I love the docs I have but sometimes I wonder if they really get it???

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My experience is a little off-topic. I was taking Cymbalta for a few years and gained 35 lbs. I switched to Zoloft and the weight started to come off very slowly.

I started a very restrictive diet a few months ago to treat fungal dysbiosis and heal my gut. It's sort of like the Wahls diet or Paleo diet. I eat oatmeal with nuts, seeds, and spices in the morning. And I have a huge kale salad every night. I also eat a ton of pastured eggs. Anyway, I lost the rest of the weight and it feels so good to be back to my normal size.

As far as exercise, I try to walk a few miles most days when it is cold out. I also go to the pool. I can do both of these activities without feeling lightheaded.

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I am on Cymbalta and have been thinking about asking my dr to switch me to something else because I have had to take my Xanax more. I wil definately ask now. Thank you!

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Mandi,

My doctor didn't believe me when I said I was gaining weight due to the Cymbalta. I slowly gained about 10 lbs per year and he just said that we gain weight as we get older.

I didn't include all the details in my first post, but I will now in case they are helpful. I gained 35 lbs over about 3 years while on Cymbalta. I stopped taking it at one point and lost 30 lbs in 3 months without even trying. Unfortunately I also went into a major depression and went back on the Cymbalta and gained back the 35 lbs in under a year. I switched to Zoloft and the weight started to slowly come off again and I am finally back to my normal weight.

At first my doctor was adamant that Cymbalta does not cause weight gain. But I know my body and I've always been slim without trying. I tried to convince my doctor, but he was so certain that I began to doubt myself. Now that I've been through a few weight gain and loss cycles, my doctor says "of course it was the Cymbalta!" Luckily I think he is a good doctor, otherwise I would have found a new one after this experience.

Your weight gain might be completely unrelated to Cymbalta. But you know your body best, so don't let your doctor make you doubt yourself if you feel strongly about this.

Good luck!

Amy

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I gained about 25-30 lbs after starting on Florinef. I went from 95 lbs to about 125. I exercise very regularly and run 5ks and obstacle races, and it's been absolutely impossible for me to lose weight.

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me too! I have gained a lot of weight after starting Florinef...... my specialist says he doesn't think the low dose I am on could cause that but I know it's the Florinef.....it still has steroid components even if it is a small amount. I think it somehow has effected my hormones too in turn causing the weight gain. I hardly eat and yet still have gained weight :( it is frustrating fighting with that along with all the other annoying symptoms........

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When I started florinef I gained 3 kilos in one night. Needless to say I retained way too much fluids and hadn't been able to sleep that night due to the fluids pooling in my stomach and head. Next morning I called my doctor who told me to immediately stop the florinef. Doing so made me loose the 3 kilo's quickly.

I'm on an SSRI (Paxil) and don't gain weight on it.

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I was off Florinef for about 6 months and wasn't able to lose any of the weight. I wonder if the amount of time you've been on it makes a difference? Whether you have more of it built up, or the effects last after you stop taking it?

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I've gained about 15 pounds... I assume from inactivity but not sure bc I also eat much less now but bloat a lot...

I've been continuing an exercise plan and hope to lose it. I was 114 when I got POTS and was 129 at last dr visit... I think I've dropped a couple but its hard to tell, I look skinny in the morning but pregnant after lunch ;)

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Hi Olayak

i was on florinef for a year gained 14 pounds , stopped 16 months ago didn't loose any weight until last month but now it's going, dropped 10 pounds quite abruptly much to my pleasure ! Hang in there I know it's very frustrating when you eat well etc . 

 

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Thank you! Doctor just started me on midrodrine 5mg 3x daily because I was still fainting daily despite taking the Florinef and Inderal. Hopefully if I take the midrodrine instead of the Florinef I'll go back to my normal weight! Glad to hear about your weight loss! What helped your pots symptoms? I can't seem to keep my blood pressure up (it keeps dropping too 75/45) and great rate down (even after meds it's around mid 90s often) 

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On 1/4/2013 at 10:43 PM, westernmass said:

I've gained about 15 pounds... I assume from inactivity but not sure bc I also eat much less now but bloat a lot...

I've been continuing an exercise plan and hope to lose it. I was 114 when I got POTS and was 129 at last dr visit... I think I've dropped a couple but its hard to tell, I look skinny in the morning but pregnant after lunch ;)

I was 114 before pots, 134 after taking florinef for a year. I eat super healthy and exercise. The weight gain is awful for me! 

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I finished florinef and went onto midodrine I started at 2.5 mg and built up to 7.5 mg x3 times a day , I'm allowed to take another dose if I have a partially long day which I do occasionally . The constant dizziness subsided within a week but other symptoms still remained , it took about 6 months for me to start to see a real difference. I think for me the midodrine gave me the ability to start doing things again, i could stand without falling over ! it has been a slow progress, as you know push too much and it's a day or even a few days on the sofa again !! I still have the Pre syncopal attacks but I think I know my signs well enough to avert them on most times, drinking a glass of ice cold water in one go really helps me as hot flush is my first warning sign. As for other symptoms they still are with me on a daily basis but just not so severe most days. I am back working and running my home but spend at least one day a week so fatigued I chill out on the sofa! 

My bp now is about 110/70 I still get days where it drops 90 / 50 usually a sign a need to rest and drink . I have also learnt that I actually need to get up for 15 mins and move about at least every hour  or the sitting and resting actually makes my symptoms worse, it's a fine balancing act !  I drink water and electrolytes and try to pace mysel. It really took some time with the midodrine to stabilise my BP and on the whole it has worked well , the HR is a bit better but still goes from resting 65 to 120 without trying 

I hope the midodrine works for you , 

 

 

 

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I've gained weight over the past couple years. I couldn't keep up my activity level. 

I have a ton of bloating after eating so that doesn't help. It definitely seems much harder to lose the weight. 

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I have just started Florinef and my dr promised me I wouldn't gain weight from it, and I would just feel a little bloated. But reading all this makes me not want to take it... obviously vanity is of least concern but at the same time it sucks. I was a dancer my whole life until POTS happened to me 5 years ago and though I'm still "thin", I don't look anything like I used to. I have to eat or I won't feel well and seeing weight gain as a side effect to medication really scares me. I used to be on Zoloft which I thought made me loose weight strangely enough? And I'm think about taking that again so maybe it will balance things out. Good luck with everything, just try to remember we're all beautiful no matter our size, it's hard to feel that way sometimes but it's the truth :) 

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I found this topic something I could definitely relate to. Since I was 45 when I acquired pots, I thought my weight gain was just middle age catching up with me. I eat healthy, and very little. I even tried eating more and focusing on increasing my protein intake, but that did not help either. I have gained about 15 pounds since my diagnosis. It is very frustrating. I have been on the florinef for about 9 years. I do not know how I would function off the florinef, since it did make me feel some better. Midodrine did nothing for me when I tried it. As for exercise, I keep trying, but it is SO difficult not to overdo and have a major setback. Just got a rowing machine, and starting off slow at 2 minutes a day. Having to skip today as I feel too worn out. Might have to back off the time.  Just doing gentle yoga before that. But, prior to pots, I was active and never had to worry about weight gain.

I just have to wonder if the pots itself affects our metabolism since it affects most everything else. 

Glad to see it is not just me. Thank you everyone for sharing:)

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Hello I had weight loss surgery in 2014 lost 100lbs. Diagnosed with Pots in 2015 and have regained 60lbs. No matter what I try I'm still gaining and feel like I have failed. I'm on so much medicine do anyone know if it's normal for weight gain with Pots. Is Florinef the problem? What have yall try to lose weight?

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When I started florinef I read on the internet that people who increased up to the prescribed dose slowly didn't gain weight.  I started with half of a pill for a week and added another quarter of a pill weekly until I got to a whole 0.1 mg pill.  No weight gain.  I have also found that my body likes lower carb, higher fat diets, but not too low with the carbs.  It is easy to keep my weight stable, and only a little effort to lose.

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I have been on florinef for a solid year 2mg a day had no weight gain until I started propranolol about 4 months ago. I have put on over 10 kgs and none of my clothes fit anymore, my specialist said oh that’s ok it will help your low blood pressure! Ok for him to say I feel so unhealthy!!

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