I have had POTS for 10 years. Gradually overtime, I have gained alot of weight. I am considered obese. I have changed my eating habits. lots of veggies and fruits small portions of lean meat. I treat myself once a week to some chocolate. I don't loose any weight. I am unable to exercise. When I do a small amount I get so exhausted I am in the bed for 2 days. I am 31 years old. I have constant nausea due to headaches. I am at the end of my rope thinking of what I can do to fix this. I am sure my meds have something to do with this all as well. Does anyone else suffer with this?

Yes, I have a problem with some weight gain as well. I used to work out with weights and do lots of walking and was slim and trim, but over the last 2 1/2 years of being very sick, I have gained about 15-20 pounds. It makes me feel very upset because I was always 'skinny' growing up. That is how I feel comfortable.

I fought taking medication of any kind because I've been down that route before and knew what would happen--I would gain weight. Sure enough, practically the minute the meds were in my mouth, I gained weight!! And naturally, not being able to work out any more makes it impossible to get back in shape! I can hardly do ANYTHING without becoming so exhausted that I just have to lie down for a day (days) and just vegitate or sleep. Very difficult to do when you have children!

I feel your pain, Nicole. It is NO fun being stuck in a body that will not cooperate with what you want it to do.

I'm very sorry to hear that besides being sick quite some part of the days you cannot be comfortable inside your bodies. Maybe what I'm going to say it's stupid but have you try pilates? This excersise technic was developed by a man with asthma, Joseph H. Pilates, that could not do "normal" gymnastics. I have a very mild dysautonomia, so most of the time I can sport normally, even though I like to do from time to time pilates, it's reconforting.

I also gained weight after getting POTS. I was about 100lbs when I got sick and now I weigh 130. I cannot exercise either and I don't eat very well I am a junk food junkie. I find it hard to be satisfied with healthy food. I would like to eat better but I was so used to being able to eat what I wanted I can't break that habit. I was told my whole life that I needed to gain weight and now that I have my family makes comments about how much I have gained. They blame it on me now living in the country! I think it is from having POTS!!

Hi Nicole -

Are you on a beta blocker or florinef? I gained weight when I was on beta blockers, florinef and an anti-arrythmic for several years. Although I expected some weight gain with the florinef I had never realized that beta blockers cause weight gain as well. When I had to go off all those meds due to toxicity in Feb. I lost over 20 pounds in just three weeks. I also felt more clear headed than I ever had and realized that most of my "brain fog" was being caused by the meds as well. Since only being on a calcium channel blocker for my symptoms now I am maintaining my normal weight.

I know how frustrating it is. Not only do we have to contend with the POTS issues but also self-esteem issues as well. Unfortunately, weight gain is a trade off for taking meds that help our other symptoms.

Hang in there - if your weight gain is too much and affecting other areas of your life, maybe you could talk to your Dr. about other medication options.

I have POTS and once I was put on atenolol in may, i've gained 20 pounds. What's interesting is I go to phyical therapy twice a week and try to be as active as I can without overdoing it. (meaning I still try to go to grocery store, occasional walks, etc).

I started fixing my diet this week - fruits, veggies, chicken, no fast food, just a couple sodas and cookies, no candy this week. I've lost 5 pounds!!!

oh - and my specialist things the weight gain is most likely fluid retention & the fact that I was eating junk while my metabolism was slower than before I got sick.

I am happy about the 5 pounds but am being realistic - I doubt I'lll keep losing at that rate, it was probably the extra stuff.

Do you have the option of physical therapy? Its not like going to the gym, I sit in a chair and do exercises specific for the different muscles in my body. I was up to 3 pounds arm weights which was huge improvement but then relapsed due to other stuff and now am back to no weights.

That could give you some physical activity. Believe it or not, there are some days I go and am so tired when I get there but have more energy when I leave. There's only been 1 day I didn't go because my POTS was so bad and I didn't have a driver.

Even as tired as we are, the physical activity we can do is important - not for weight - but for health. Its a fine line between physical activity and overdoing it and I've learned the balance the hard way by overdoing it and relapsing.

Ok, off my 'soapbox' LOL. I hope you are having a good day today.

Just an fyi... If you suffer from constant migraines there are preventive meds that can help and have a side affect of weight loss. Topamax is one, do some reseach and talk to your doctor.

Hey all!!

I've had weight struggles too. I think it is a combination of several things if you gain weight..the type of dysautonomia you've got, the fact that symptoms make us much less active then we used to be, meds, the high fluid/salt intake stuff AND eating triggers a reflex that helps stabilize BP/HR for a short time (think they're studying this at Vanderbilt).I'm also thinking digestion causes lots of serotonin to be released which helps with pain. Folks that do not have chronic pain/symptoms like us don't really get how much relief can mean to a person...controlling when that relief arrives is even more important.

Dietary improvement is always a goal. Eating a small, low fat, palm-sized portion of protein followed by low sugar fresh veggies and no more then 1/2 cup of whole grain carbs per meal really works. Six small meals like this, each no more then about 300 calories helped me to lose 35 pounds over a 5 month period of time. This happened when my symptoms were not flaring up though and like many of you it has been an "up and down process" for me as well.

Sometimes I think gaining weight is a compensatory mechanism that helps keep the BP/HR more stable.

As always...check with your doc before trying to lose any weight...get the diet from him/her too. Losing weight too quickly can actually cause dysautonomia symptoms even in healthy people!!!

hi..

feel for u.. i was always skinny, my doc whanted me to put on weight.. now i have.. I am not owerwight, but def not skinny anymore..=) my weight and size goes up and down all the time, and dont seem to be that much influed on my food intake. And from one day to another..not fun.. i would love to be abel to exersise again..

Same here-I think its clearly exercise intolerance that makes it so easy to put weight on.

I was slim before I got ill -I would walk to work and be on my feet walking around (I worked with kids at a school) all day. I didnt need to be on a diet or go to the gym.

Since I got ill I dont eat properly-mainly because Im miserable and eating stuff that I dont really want to be eating just makes me feel even worse!!

I have put on about 10-14 pounds but Im quite short so I feel its noticeable. Im so exercise intolerant even on meds that I just dont work any calories off. I dont eat that much but I eat the wrong stuff.

I would love to be able to just walk like I used to-I think putting on weight will end up making you feel depressed as well as POTs so at some point Im going to have to be strict with my food and see if I can lose a bit.

My docs arent worried because Im not obese but I dont feel happy with myself anymore which Im sure alot of people feel like.

Hey all. Thanks for your support. I have gained 75 pounds!!!! Gradually it is getting worse and worse. My mom move in with us a year ago and that is when the weight really came on. She had me eating at every meal (big portions). I didn't complain until I got on the scale and saw what was happening. I did start feeling worse after I ate because of all of the carbs and big portions. Now I am restricting alot of that and watching what I eat. I am on Florinef and a beta blocker. Those are just 2 meds out of the 14 I take. So I am sure there are some more meds that are contributing to this as well. I have started to do 15 minutes of sitting down exercises. so I hope that helps.

Oh yeah!!! I have taken Topamax for the migraines and it did not work. I am on Keppra now for a migraine preventative.

Nicole,

I have tried Topamax, as well, and it gave me horrible panic attacks! I was completely paralyzed by fear--totally unlike me.

How is the Keppra working for you? I'm on Neurontin (gabapentin). It seems to be OK.

Hope your new eating plan-of-attack is working out for you--my mom and dad were just here and my mom filled my whole freezer with baking!!! Yikes!!!

Hey lady! I gained 100# in 4yrs. My psychiatrist had me on Cymbalta, and when he switched me to Pristiq 2 mos ago, I lost 25#. I am on most of the other meds mentioned here except florinef, but I am so finely tweaked with meds, my mds really are hesitant to change meds. Now I have Type 2 diabetes, and am not sure, but will probably go on med for that next mo. I agree with other above eat much,much smaller meals, no white anything--flour,bread,rice,etc--lots of fresh veg, and some fruit. In short check out the diabetic diets--I have a friend who is a personal trainer, and he said that his diet plans for his clients are basically the diabetic diet. You can eat a lot, but it is mostly vegetables. Check it out, and good luck.

Thanks so much for the encouragement!!!