POTS and your weight

[Guest Mary from OH]

Please check one of the above as to how POTS affects your weight. Thanks!!

[Gena]

Mary,

Thanks for posting this poll. I've been wanting to know this myself. I lost some weight when my POTS symptoms intially struck me this past summer. I was already underweight. Now it's a struggle to gain even a pound! Iknow some people have the opposite problem though. It's really strange how it can affect us so differently. My doc in Birminham said that most people she sees with dysautonomia are underweight though.

[calypso]

For me, there should be a category called "ridiculously excessive weight loss."

Amy

[yogini]

I just got back from my cardio's office. He noticed that I had gained some weight, and told me I was looking much healthier than when I first came to see him in Feb. I am 5'3" and weighed 103 when I came down with POTS. I actually went to my GP last year (before POTS) because I was losing weight without even trying. (I also went to him beacuse I thought my heart was beating too fast at the gym, and he didn't really do anything except run some blood tests which came back normal. LOL) I now weigh 116, in part due to florinef and inactivity. But my cardio says this is a much healther weight for me. I would prefer to be around 110, but getting my POTS symptoms under control is more important than my weight. In short, I don't know how to answer the poll, but I think my former weight loss contributed to my getting POTS. I was able to gain it back, though!

[dizzy]

I voted no change, however I have been underweight most all of my life.

[MomtoGiuliana]

I voted weight loss only b/c the first time I developed POTS symptoms (when I was 30) I went down to 118 lbs (and I am 5'10"). The weight loss was the primary symptom, along with a rapid heart rate and dizziness. Of course, during that time I also was diagnosed with Hashimoto's thyroiditis, which, although very mild, was likely contributing to these symptoms. Once the thyroiditis was identified and stabilzed, the POTS symptoms SLOWLY went away (I was not diagnosed with POTS at that time).

Now I am 150 lbs. I don't think my pregnancy/post partum POTS affected my weight very much.

Katherine

[goldicedance]

Weight loss, for sure, when POTS rears its ugly head. When I was first taken with POTS, I had weight losses. Now, whenever POTS gets exaccerbated, there is weight loss--caused primarily by fluid imbalances--i.e., more out, than in. That's the reason for DDAVP.

[ramakentesh]

WHen i first came down with bad POTS i lost soooo much weight that they thought i had an overactive thyroid - a battery of tests all proved negative though.

My doctor told me that the same mechanism is at play - an overactive nervous system.

[Guest Julia59]

I lost weight at first----then gained weight after I was on medication to control symptoms. I believe the wellbutrin is the culprit---and propranolol is known to cause people to put on a few pounds, and i'm also on that. Inactivity from exercise intolerance doesn't help.

Julie :0)

[leah1321]

When I first got sick, I lost 25 lbs fast eating like 3500 calories a day. I put some back on, but not much and then struggled for four or five years to keep weight on and ended up 20 lbs underweight for a while. I am petite, 5'4.5" so 20 lbs under was a big deal. I am now trying to lose weight because a medicine I took made me rapidly chunk up. In a few months I went from drastically underweight to a little overweight. I am now only a few lbs over, but I would like to have more control over my weight and I seem to have none.

[bluebeauty875]

I have gained weight. I'm going to a dietition to see if it is due to my health or to my eating habits which have not changed! It's so frustrating! The stress of being over weight certainly doesn't help my POTS.

[juliegee]

I checked weight loss as that's a big probelem for me when my POTS symptoms flare. However, when things are under good control, I actually have to be conscious of my diet and exercise as I'm 45 and my metabolism is slowing down:-) Those who are my age know exactly what I mean! That being said, when my symptoms flare, I can lose 20lbs (that I don't need to) in a month. Interestting survey!

Julie

[JenniferInOhio]

I voted no change. I've always been tall and thin...and pale.

[arizona girl]

I was always very tiny for my age and had presyncope episodes starting in grade school.

When I really flared up in my early 20's though I dropped down to 96 pounds and looked anoerexic, I eat though. Then they put me on dexemethsone and I gained 25 in months. I've always wondered in the dex contributed to the pcos/metabolic syndrome or if I always had the high insulin, and was like putting gas on a fire. So I'm up to 150 now. Though I do loose weight when I'm on glucophage. I'm only 5'2 so that's a lot of weight for me and it's not what I'm eating, as I don't eat much, I get full so fast. I joke you always get two meals for the price of one with me.

I've come across a few articles that talk about the high insulin being linked to the autonomic dysfunction. Any other shorties who've gained or have pcos or metabolic syndrome?

[mae]

I voted weight loss. I was losing weight rapidly when symptoms worsen thoughout the month and gain when symptoms are milder. So through the month I can go from 103 to 96 every single month and never above 103. and I'm 5'3

Mae

[toddm1960]

I have gained alot of weight latly because of my lack of activity and the fact that I feel hypoglycemic all the time. Or at least every 30 minutes, so it seems I'm always eating now. Does anyone else have this?

[Heiferly]

I've had major weight gains and losses since I've had POTS (as much as 50 lbs either way). The gains seem to be med-related, and the losses I had to FIGHT my way back to my normal weight after I got off the offending meds using mainly diet (due to exercise intolerance). I definitely don't easily lose weight since having POTS, and if anything, I am prone to gaining unless I restrict my calories.

[MelissaCrystal]

I've been able to lose 20 lbs in 3 weeks and gain it in a week. Mine fluctuates a lot. Lately it has just been going up though, because of no activity and having stomach pains. I'm always wanting to eat to try to make my stomach feel better. I have ulcers and I don't feel good when I get the slightest bit hungry.

[mattsmum]

Geez I can I change my POTS to the weight loss kind? Suspected florinef I dunno but am always hungry have gained 10kgs since starting it then took that off last year through extreme agony. Have always been fat suspect always will be fat. So if any of you are on medication which contributes to weight loss I WANT SOME!

You can just see it in the pooling of the legs and fluid in the legs looks horrible I hate it!

[willows]

When I first had POTS I lost weight and went down to around 7 stone , I stayed like this for about 10 years , then having had the children ( 3 live ) and the miscarriages ( 4 ) and the big problems with my digestion system getting worse and worse over the years I now find that my metabolism is running extremely slowly.

Most people have around 1200 to 1000 calories when on a strict diet , I have around 1000 calories on a normal day and have to go down to 500-600 if I want to loose weight , which blows away any help I could get from one of the normal weight loss clubs etc as they do not understand how POTS works or how it has effected by metabolism .

So far I've lost 21 lbs since Christmas , but I've had to have a few weeks off the diet when I've been unwell as I have needed to eat what I call 'normal' to get over the infections etc.

I have another 28 lbs to go ................ and I'm hoping to have achieved this by the end of June or abouts .

Loosing weight is so very hard especially when your diet is restricted . I know I should be eating tons and tons of fruits and veggies each day and be keeping off the things I cannot ever digest , but my mind is willing ..........its just the body who keeps stuffing things into its mouth when the rest of me is not looking ......................shhhhhhhhhhhhh, dont tell the left hand what the right hands doing or there will be fights !!!!!

If anyone wants to loose some weight and swap recipes or tips etc message me.

And YES , I take a drug to help me loose weight ( from my doctor) and its not that awful drug that makes you run to the loo every few minutes because you have eaten to much fat , the drug I take helps you eat less and its really does work , I had to fight the local health authority to get it , but as I am at risk of a heart attack, stroke or other nasties they decided that it would cost them less to give it to me than to treat another condition if I got any larger .

Ami .................not quite sure what she's doing at this time , what is the time by the way ...........OMG its 3:30 am in the morning ooooooooooooops I'm off to bed now Bye XXXXXXXXXX

[Griffin]

I gained weight due to having to rest all the time which I always attributed to my Chronic Fatigue Syndrome. I have probably had hypotension & tachycardia all the time as well which is in itself either causal or result of CFS.... so who knows which it is really attributable to !!

[Batik]

I gained weight after many years of ME/CFS - not sure when the POTS kicked in. I managed to lose it the other year. The forum at 3fatchicks.com is pretty good if you want to lose weight. I lost 25% of my body weight and have been maintaining that loss for a year now.

[TCP]

Bloating, meds etc 5.5 stone increase.

[angelloz]

Great question! Like Ramaketesh doctors thought I had an overactive thyroid at first..oh how I wish. I am 5' 2" and lost 25 lbs rapidly...in 2011 gained a bit back and felt better too.....fast forward to this year..lost another 7..weigh 97 and look like a skeleton...I try to eat PLENTY but can't gain. I also have a mast cell diagnosis...so maybe ny body can't absorb the calories?? I can't eat sweets or dairy so that makes gaining weight harder. Not eating dairy lessons the migraine frequency. Sugar makes me jittery...really jittery... I use lots of olive oil....

Are there drugs that help with weight gain without causing some horrible side effect? Florinef increases my migraines and I end up vomiting...so no bebefit to that .

Angelloz

[Joann]

I lost weight, in fact, in the beginning the doctors were trying to tell me my problems were just acid reflux and once we got that under control and I was able to eat I would be okay. They would not believe that I was having additional symptoms with activity. But I could not eat anything, even water would bother my stomach.

I am 5'7" and I was down to 100 lbs. It has taken over a year but I have gained twenty pounds, this is actually about my normal weight, I have always been really thin. I am trying to gain some more because when I have flares I am unable to eat.

I tried eating just healthy food, it didn't work, I need fattening food. I avoid my food triggers, but I eat an ice cream bar and chocolate every day to gain/maintain my weight. Have had to give up so much with this thing, thank godness not my chocolate!!