Cardiologist Says Weight Gain Will Cure Pots

[JuneFlower]

So , not impressed with my daughters current dr. She has gained a few pounds and has felt better the last week. So he says if it continues she can stop the medicine mostly and just use Midodrine as needed.

Has anyone experienced this? Is nutrition really the answer to all her problems? I am skeptical but open.

June

[Katybug]

I was 5' 4 1/2" and 125 lbs and very fit at the time my POTS symptoms started. Due to the meds I have been given over the last few years for POTS and migraines plus the exercise intolerance, I have gained 60 lbs and am now overweight (ugh!). I assure you this has not improved my POTS or any other part of my situation. I in fact struggled to gain weight before POTS and was always quite thin.

I'm not saying that someone who is underweight won't feel better if they can find a way to get to a healthy weight and maintain that. I think even someone without POTS would feel better under those circumstances. I just think it's irresponsible of a doctor to imply that being underweight is the underlying cause of any form of dysautonomia. In all the literature I've read on dysautonomia, that has never come up as an underlying cause but has come up as a symptom described by patients.

[gjensen]

I wonder if he is not influenced by the thinking that POTS can be caused by deconditioning.

I do not doubt for a moment that getting some weight back on and getting in shape would be helpful, but I am skeptical about the idea that it will be some magical cure.

It is really good to hear that she has trended better recently. I hope that the trend continues.

[turtlefairy5]

When I had the TTT, a nurse said, "You need some pork fat."

I think people with POTS tend to be thin, some see the correlation, and form a false if/then.

I was overweight when I developed POTS symptoms.

[Joann]

When I first got sick with all of this, I dropped a ton of weight because I was unable to eat, because i felt so bad. My doctor tried to tell me that my only problems I had were gerd and anxiety. Once i got so thin, that other doctors noticed aand I mentioned it to her I was unable to eat, she then tried to say my problems stemmed from a eating disorder!.

I got another doctor and after getting extremely worse, I was put on some blood pressure medications and slowly regained weight. I will say I got somewhat healthier when I regained my weight but it did not cure my "Pots" or other problems. I even attempted and was able to add about 8 lbs heavier than I ever was. This did not help my symptoms either. Now my jeans are just tight and I am trying to get back to my pre-pots weight. I think my blood pressure medications slow my metabolism and I am unable to exercise so this is becoming a challenge. But when it all began I was very healthy and active.

[blueskies]

I was 5' 4 1/2" and 125 lbs and very fit at the time my POTS symptoms started. Due to the meds I have been given over the last few years for POTS and migraines plus the exercise intolerance, I have gained 60 lbs and am now overweight (ugh!). I assure you this has not improved my POTS or any other part of my situation.

Katybug's weight fitness history could almost be mine. Except I am taller.

If anything I think growing fatter has just made health problems more complex. Although I am talking about a lot of weight gain as does Katybug.

blue

[lejones1]

I've heard that POTS patients are often thin, but I've never read anything about being too thin causing POTS and I can't really imagine how that would work. I think your daughter's doctor is confusing correlation and causation. Has he considered the possibility that she has gained a few pounds BECAUSE she feels better? I've always been thin and when I got POTS I lost 10-15 pounds and became underweight. I also felt terrible. In the last 6 months I've returned to my normal weight and have been feeling better. But I don't feel better because I gained weight - I gained weight because as I started feeling better, my appetite returned. It's wonderful that your daughter is feeling better, but that seems pretty...lazy as a doctor to say "if you gain some weight, your nervous system disorder will go away". No, I don't think so.

[JuneFlower]

Yeah I kinda feel like you all have stated. But I really respect this particular dr. But he does admit to not being an expert on POTS. He usually refers difficult pt's out to specialists.

June

[LastUnicornLady]

I've always been really slender, too. I'm hesitant to say "thin", because it's more of a fit, muscular, type body build, and not what I would describe as "thin." (Think gymnast!) At 5'4" and weighing 49 kilos (108 lbs), I've never had much weight to spare. I've actually been loosing weight because of a lack of appetite/extreme nausea, and I'm really hesitant to say that gaining weight would be some magical cure, and like someone else already mentioned, I suspect I would gain weight because I was feeling better and not the other way around.

As for nutrition being the answer, I've heard a lot of different views on that. Several people have mentioned pretty extreme improvement in their dysautonomia by cutting various things out of their diet, whilst others say diet has nothing to do with it. I'm open to trying pretty much anything right now, and am looking into doing something like this- deliciouslyella.com/food-philosophy/ This young lady was also diagnosed with POTS, and saw marked improvement with a vegan diet. Since I haven't seen any great change with the medication I'm taking, and I'm still in a very adventurous mood, I figure it won't hurt too much to give this a try.

[BeforeTheMorning]

I think it's very hard to tell what fits in where. I know that now I have put back on the weight that I lost at the start of POTS I feel slightly better, but I wouldn't have been able to put the weight back on if I hadn't started to feel slightly better anyway. I hope that your daughter continues to improve.

LastUnicornLady - Wow I have been looking at that diet too! I figure anything is worth trying, I just don't want to get to the end of this year without seeing any improvement at all. I was wondering if maybe we could keep each other up to date if we're both doing it, to help stay motivated (which is something I will really need ) feel free to message me. Lyla

[looneymom]

Hi June,

Sometimes with POTS, you can have some nutritional deficiencies like low D, B, and iron. Your daughter may be feeling a little better because these levels have picked up because she is eating more. My son had low iron and D levels in the beginning and his D levels have slipped down again. Might want to get her checked to see where her levels are at. If her levels show up at the bottom of the normal range, more that likely her levels have been much lower and you may need to supplement.

Rachel

[brethor9]

(Katybug I am the same as you).....before being diagnosed I was in stellar shape at a very healthy size 3...since battling POTS over the last 4 years I have gained atleast 40 pounds thanks to the florinef and beta blockers.....it has definately not helped with my symptoms....I am small framed and the joints are not liking it ......to be honest some days I feel worse than ever...so I really don't feel that weight factors much into it imho...although I also have MCAD and EDS so makes my case a little different

Bren

[badhbt]

LastUnicornlady

Thanks for sharing the blog on deliciously Ella. I have only been able to find one other blog on a girl who went Gluten free and it cured her POTS http://www.dontmisdiagnoseme.blogspot.com/ I went gluten free and I have to say that helped my symptoms more than anything else has. I think I still have some tweaking to do with my diet. I feel like something is still off. It sounds like it took Ella 18 months, so maybe I need more time.

[Katybug]

Badhbt,

I'm glad gluten free is helping you (I wish that had been my answer.) If you still feel like you might have some gluten contamination, have you considered the toiletries you use. Toothpaste, haircare products, moisturizer can all have gluten in them and be absorbed and screw up your gluten free diet you work so hard on. Just a thought. ..

[badhbt]

Thanks Katybug. I have recently changed all of those things. It is amazing what is in our products. I wish it could help everyone, but I feel the duty to try to encourage people to try it. I had no bowel symptoms, or any reason to believe I had any food sensitivities. I just tried it because I went to a conference about it.

[Tuesday]

Correlation does not equal causation.

Up until I started medication for my Dysautonomia, I was rail thin. It was difficult for me to gain weight no matter how hard I tried. As I've been treating my symptoms and started feeling better, I've been able to take better care of my body in general. That, combined with the side effects of some of my medicine, has caused me to gain weight. As I start to feel better, I am indeed gaining weight. But I don't think that's the reason for my improvement.

I'd seek a second opinion.

[IceLizard]

I wish that were true... If it were I would be cured by now, LOL.

When I was at my sickest, I had a lot of trouble with acid indigestion, loss of appetite, and heart rate spikes in response to food. I lost so much weight that my knees were the largest part (in circumference) of my legs.

I am much more stable now, but I still struggle with dysautonomia daily. Medications and a better appetite have caused me to gain weight and I now have a normal BMI.

It could also be that the weight she gained was water weight, thus increasing her blood volume and improving her POTS symptoms.

[Christy_D]

I also disagree with the weight gain theory. When my son first become really ill, on a daily basis, he was a very thin kid. He was in the 20% for his weight and 95% for his height. He has put on a lot of weight, now he is a little over weight, which is also not good. But the more weight he put on, the sicker he was getting. I don't think weight plays a big part in this. I think deconditioning hurts him, but whether he was thin or not, it didn't matter, he was just sick, sick, sick.

[JuneFlower]

ice lizard- she goes to a nutritionist who can measure scientifically what she gained. She gain 1lb muscle, 2 lb organs, 2 lbs fat. Still real low on intracellular fluid.

June