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!

[Delarose]

Unless already diagnosed with POTS before Ed symptoms occurred, I think people with eating disorders can have SOME of the symptoms of POTS due to lack of nutrition, dehydration, electrolyte imbalance, but don’t actually have the syndrome, which is a diagnosis unrelated to an eating disorder. It just so happens that some of the symptoms overlap, blood pressure drop, postural tachycardia. But for most these improve as recovery occurs, although I think the longer you’ve had your eating disorder the longer it takes your body/heart to heal. But I do not think the symptoms we are seeing in Ed’s (unless prior diagnosed) are POTS. Some of symptoms mimic some of the symptoms of pots, but these usually improve with recovery (for most), unlike POTS there is no “cure”. 
 

so basically so many people with Ed’s are being diagnosed with pots when in actual fact they just have postural orthostatic tachycardia due to malnutrition, they don’t have the actual syndrome, which is usually genetic 

[Pistol]

21 hours ago, Delarose said:

so basically so many people with Ed’s are being diagnosed with pots when in actual fact they just have postural orthostatic tachycardia due to malnutrition, they don’t have the actual syndrome, which is usually genetic 

@Delarose I would like to pipe in and mention that SOME types of POTS are genetic ( it is in my case since 3 generations of women in my family have it ), but most types of POTS have a different underlying cause. 

https://www.ninds.nih.gov/health-information/disorders/postural-tachycardia-syndrome-pots#:~:text=POTS often begins after a,effective in the short term.

Quote: 

POTS often begins after a pregnancy, major surgery, trauma, or a viral illness. It may make individuals unable to exercise because the activity brings on fainting spells or dizziness.

Some people with Ehler-Danlos syndrome type III (also called hypermobile Ehlers–Danlos syndrome, or hEDS), an inherited connective tissue disorder that is caused by defects in a protein called collagen, may also be diagnosed with POTS.

[bunny]

I was severely anorexic back in the day, getting down to a BMI of 11.  Definitely orthostatic when they'd do my BP.   

My weight's been normal for decades, but still have the symptoms now.  No family history of POTS, even out into the extended family. 

[bumpkin]

On 7/6/2024 at 10:38 AM, Delarose said:

 

 

On 10/22/2021 at 9:04 PM, Lia said:

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.

 

Not sure why it won't let me correct the block quote or delete my post and start over, sorry for the double tag

Pistol's advice is spot on, it's critical to retrain yourself to view food as nourishment and find clever ways to work in nutrients even when you're not feeling up to it.. I have to remind myself this multiple times a day, I don't know where my own appetite went recently but I suspect it's gut related.. Without nourishment we are in very rough shape, and going without that much needed fuel is always gonna leave your mental and emotional state more vulnerable, it's really imperative to be kind to yourself even when you're not up to it. 

I'm fairly certain I did break myself with a sudden dietary shift that either threw my system out of balance or pulled the mask off of an existing gut condition, but I don't believe we're beyond repair at all, I think the journey back is just super tedious.. we have to stay consistent to build up to where we're seeing results. Getting regular daily nourishment is necessary to be able to work towards getting the symptoms in check and eventually getting to the bottom of it all. So even in cases where we maybe didn't do right by our bodies for an extended period of time and landed here, I don't think that's the end of the world, I don't believe it's a lost cause or impossible to recover from at all, it's just very challenging. 

I don't have an ED, but at the onset of my dysautonomia within a couple weeks I had 15-20lbs suddenly go missing for a couple months while I tried to figure out which foods I could eat that wouldn't trigger symptoms.. And then I was down to almost no safe foods, and my brain and body were in very scary undernourished condition. Eventually my doctors pushed me to stop restricting and start throwing down carbs again, and I got back on track by taking in 3000+ calories a day using a calorie tracker app for about a month until my metabolism leveled out again. After that it all felt like such a close call that I opted to remain slightly overweight, malnourishment is just too terrifying a scenario. The GI issues challenge my appetite daily and that makes it tough to stomach food, but I think if I struggled with it beyond that, after what I saw my body go through in those first few months, then I would definitely look into a good therapist to help get ahead of it.. I don't have an ED but it was all too scary as it was, you may need more support than you've currently got to help you stay the path. 

Sometimes it takes time to figure out what works for you, it might help to focus less on restrictions and read up on nutrition instead, and poke around on DINET for meal and mealprep ideas. I use a dysautonomia journal I found online to help track my food and water and symptoms from day to day. MikeO's got a great thread going on here for metabolically friendly meal options. I also like to use Foodstruct, it's got a ton of info and I mostly use it to gauge carbs and glycemic index of ingredients (this has helped mitigate the episodes of racing heart brought on by blood glucose levels). I leave small snacks like beef jerky and protein bars and little coconut waters around so I always have something I can grab for a quick energy save til I'm able to work up to getting a real meal in--That might only be once or twice a day so I try to make it count nutritionally. I've been trying to keep it simple, like if I throw down carbs then I make sure to balance it with something that's got fats or protein to avoid the blood sugar nightmare.

Once you have a handle on your safe foods and the macros to hit in a day, it gets a little easier and more automated despite the appetite struggle and negative relationship with food (mine was horrible and anxiety-inducing until I shifted my whole focus to getting enough calories and sufficient nutrients, everything I eat now serves a purpose). I've had a routine that works ane have started working on adding more variety in, and the Foodstruct site has been helpful with that since I can check it real quick to compare nutrients and glycemic load and stay in my safe range. I think it's all about finding little tools to help manage it. Once I was getting enough food in me again and got that situation stabilized, then I started working with my docs at figuring out the root cause and potential treatments. Now I'm kinda juggling both still. It just takes time and effort..eating in this condition isn't easy at all.