Eating Disorders And Pots

[seb10]

Hey Everyone,

I know this is an uncomfortable subject, and one I can't find information on anywhere due either to a) not being related to one another or the silence of a disease like anorexia, bulimia, EDNOS, etc.

I am currently fully recovered from anorexia after about a 12 year-long battle. Lots and LOTS of work. But I'm pretty certain that the damage I did to my body during that time is what caused me to develop POTS. I know many people develop it due to pregnancy, the flu, etc. But I was wondering if anyone else has had to deal with an eating disorder and thinks that might be the reason it came around? I think there could be a possible link -- and something else that should be made known regarding eating disorders.

Ok, thanks all! Take care!!!

Sarah

[Ernie]

Hi,

Mine is genetic but when I am fasting I am much worst.

[dsdmom]

I had an eating disorder but had recovered (like you said - lots of work!) about 10 years before my dysautonomia developed. I had a wide range of things that contributed to my dys and I do not believe that my eating disorder played a part at all. That certainly doesn't mean that it didn't affect you though!

[pat57]

congratulations dsdmom and seb10. WTG!

[firewatcher]

Sarah,

I have come across several notations of anorexia causing dysautonomia and that the NET transporter gene is related specifically to that (possibly a cause?) I just can't remember where I saw it. Sorry. I am glad that you are recovering.

Jennifer

[jump]

Sarah,

Glad you are well from your ED now -- no small feat!

POTS can be triggered by "significant weightloss" so it follows that an eating disorder can trigger POTS. I had anorexia for more than half my life and now, even though I am fully recovered and have been for several years, I still have a fair amount of physical problems, including POTS. My own doctor is convinced my dysaut problems are somehow related to my eating disorder. As I'm sure you know, orthostatic intolerance is one of the hallmark symptoms of anorexia and bulimia -- that's why when people have these diseases their doctors check their bp and hr sitting and standing all the time. With most people, orthostatic intolerance is supposed to resolve itself as the person resolves their unhealthy behaviors and maintains a healthy weight without purging. Indeed, OI is usually considered a way of determining if a patient with an eating disorder is recovering or not. In my case, it seems the OI "stuck" for whatever reason. My POTS symptoms started when I was physically ill with the eating disorder, but they did not subside when I physically recovered from anorexia. In fact, although my symptoms initially improved when I gained weight and my overall health improved, over the years I have been healthy from the anorexia my POTS has actually gotten incrementally worse.

But, even though I do believe there is a connection, I also think, at least in my case, there may be more to my POTS "causes" than simply years of running my body ragged with an eating disorder. My mother had NCS symptoms all her life until she hit menopause, although she was never diagnosed with any dysautonomic problems. My sister has what we jokingly call "occasional POTS" - she often feels really faint and dizzy in the mornings, but her symptoms are not as pervasive as mine. So, while the physical trauma of an eating disorder may have "triggered" my POTS, I think I probably had some kind of genetic predisposition or something. After all, although most people with eating disorders develop short-term orthostatic problems, most people do not necessarily develop long-term problems. So... I too feel certain there's a connection, but I'm not sure it's necessarily a straightforward or simple one.

There's no question in my mind, though, that if I wasn't eating properly now it would make my POTS symptoms so much harder to manage. I feel grateful that I was able to fully recover from one disease and the determination I learned in recovering from anorexia has definitely helped me better cope with facing POTS.

-jump

[ajw4790]

Hi,

I do think I have seen it published a few places in research that eating disorders can be a trigger or cause of POTS. As for the science, I am not sure anyone knows. But, it does cause a lot of stress on the body, and there are hormonal imbalances etc. so it doesn't seem unreasonable to figure it may have something to to with each other.

[seb10]

Hi All!

Thanks for all the responses, information, and encouragement! You guys are wonderful!!!

xoxo,

Sarah

[Olesha]

I definitely am positive my 15 year battle with bulimia contributed ...   here’s why

your Vegus nerve is very long and runs from brain through many organs in your body including heart and stomach

bulimia especially over long term can cause issues with the vegus nerve by causing to become less stimulated ....   and a vegus nerve that is in that state leads to over eating ...  binging and depression ...   

I tried bowen therapy for my vegus nerve and it worked for about 6 months ...  but I think it needs maintenance treatments 

[CallieAndToby]

Guys we shouldn't blame ourselves for an eating disorder and we shouldn't blame ourselves for our health issues. I thought the Eating disorders I battled for 8 years was my fault and destroyed my health but it's not true. Looking back I showed signs of IC and dysautonomia at age 6. Maybe it's the other way around, health problems causing eating disorder. For me, in high school I started experiencing weird symptoms, bone pain, chronic itching, fatigue and falling asleep in class; then at 18 I woke up with tons of health stuff and eating disorder thoughts that came out of nowhere! I literally never had them before so I do think they're connected but I think something may be happening to the basal ganglia region of our brains that is out of our control. I am recovered from nearly a decade of anorexia and bulimia nervosa. I will not blame myself. I fought like heck to get better. I know the fight but I will not blame myself. Turns out I have rare chronic blood cancer, no way did an eating disorder cause that! No self blame. I just let it go. For me though I feel better not eating, when I eat I nearly fall asleep because my mom is a nurse and she said there are blood vessels in the stomach that have to work harder for us to digest food and it lowers our blood pressure and does things with blood circulation......etc. So to get through college I would fast. I only finished 2 years. 

[Lia]

This is what I’m truly terrified of. That I caused my POTS. That I did this to myself. That it’s my fault. 
I’ve struggled with an eating disorder for as long as I can remember. While I never was a severely low enough weight to be diagnosed as anorexic, for years and years I starved myself. Eating only enough to get by and to avoid suspicion and other people (my parents most of all) noticing. Even now, when I’ve been at my healthiest (eating disorder-wise that is), eating is…complicated. I eat relatively normally, or at least I think I do more or less, but it’s hard to remember to eat. My appetite is ****** up and my brain doesn’t necessarily correlate being hungry with then needing to actually go eat. I used to make myself wait 24 hours at least between having a single relatively normal-sized meal. All while playing a high intensity varsity college sport (and suffering from other really severe mental illnesses and undiagnosed POTs…which went about as well as you’d expect it to, which is to say: not at all and, god, that’s the understatement of the century). This was the pattern for years. So even now, when I’m not actively having eating disorder brain or even having any major ED thoughts or intentional behaviours, eating is still hard.

I’m rambling. I doubt anyone will read this anyways. But I need to express this. My POTS has stabilised and I can mostly function like a normal human being. Normally my POTS is manageable (even with the constant chronic pain that never goes away). But I’m currently in a pretty bad POTS flair up and in so much pain all the time, so I’ve been thinking about POTS a lot (and reading about it too), trying to find ways to manage it, to make it not hurt so bad all the time, to make it go back to being an inconvenience and not devastatingly crippling. And so much of the POTS treatment and management recommendations are to do with changing your diet and eating smaller meals more often. But…eating is hard, even when I’m not struggling (and I am very much so struggling with mental health stuff right now, which probably brought this POTS flare up on in the first place). Despite the irregularity of my patchy appetite where I’m just not hungry and go long periods of time without eating and forget to eat lunch or occasionally even dinner too, my eating disorder is mostly quiet. The less I have to think about food and think about eating, the easier it is. But if I have to think about food, and particularly, if I have to think about what I can and can’t eat, then eating gets really hard and the ED thoughts become so much louder and harder to ignore. And I inevitably start slipping back into the behaviors. And I know, I /know/ that not eating makes the POTS symptoms worse. I know that. But…Eating is hard.
Even now, I sat down to look up what would be best, most beneficial for dinner, how to eat to help my health, both physically and mentally. And here I am 2 hours later, 9:15pm, still not having eaten and no longer hungry, no longer even motivated to eat. Eating now feels like a chore. Something I should probably do but would rather not. Something that’s no longer worth the effort.
And it’s now, reading about all these dietary restrictions and recommendations, that this thought, this dread, this terror comes back to me: I brought this on myself. That I ruined my body beyond repair. That no matter how much my eating disorder recovers, I will have to live with the results of it my whole life.

 

[Pistol]

@Lia - thank you for your genuine post. I am so sorry you are going through all of this, and hopefully this forum can be of help. 

First of all - I too had an eating disorder when I was in my teens, I was anorexic for years. Although I did go into Inpatient therapy for it at 19 and greatly improved, the dysfunction of thinking about food and abnormal eating habits ( although I was able to gain and keep weight ) continued for years. A genetic form of POTS runs in my family through 3 generations, so I always had it, but thankfully I did not become severely ill from it until I was in my early 40's, and by then I ate normally. 

Here is what has helped me back in my teens and early twenties to overcome my hesitancy to eat: 

1) I had to relearn that food is a necessity, nothing else. So a therapist taught me nutrition ( and not counting calories or thinkin about how fat this food will make me ). Knowing what foods do in your body and why we need them was very  important for my recovery. 

2) Choosing and preparing foods ahead of time helped me a lot when I was in my college years. I would buy ( and sometimes prepare ) food and then have it ready in meal sized portions. Even some frozen dinners from the grocery store work, depending on what you buy they can be very nutritious. 

3) I would eat food like medicine: set times I would eat, hungry or not, even if it was just a handful of nuts or a banana. If I did not want to eat I would remind myself that my body needs these calories just to be able to keep me alive ( we need at least 7-- calories to maintain our body, without gaining ). 

4) Therapy. If you are still having difficulties with eating healthy it is essential that you discuss this with a therapist or counselor. There are so many thoughts and anxieties that contribute to unhealthy eating habits that we often cannot pinpoint them ourselves. Think of people who overeat because they have low self-esteeem or eat because they do not get the attention they deserve and need. In most cases a therapist can, over time, help us discover these thoughts and feelings. 

5) Remember - there is no shame in feeling the way you do. Your mental health is affected by so many factors, both from the past and the present, that abnormal behavior can be like an avalanche - once it is set in motion we cannot stop it ourselves - we can only go out of the way. 

I hope this post is somewhat helpful. Please be gentle with yourself and take care of your body!