For people suffering from Orthostatic Intolerance, Postural Orthostatic Tachycardia, Mast Cell Activtation or EDS. Follow me as I document my struggle towards better health.

POTS and OI and my Stomach

I have not posted in a few days as some of you have kindly noted.   The real culprit behind my absence is my nutritionist.  Since starting Dr. Levine's treatment protocol for POTS I have also been under the care of a knowledgeable nutritionist, he and I have worked together to plan how I can add 10,000mg sodium to my diet daily without turning into something akin to beef jerky.

My diet has been highly regimented because I insisted on including a weight loss element to my diet to help me lose the pounds I have gained during this round of POTS/OI.  Every gram of food entering my mouth for the last few weeks has been weighed and documented.

So why is my nutritionist to blame for my lack of blogging?  This week was the first time I had an "anything goes" eating day.  Yes, on my strictly controlled diet I was allowed a day where I could eat anything I wanted (the nutritionist didn't actually say "anything" that is my loose interpretation of his instructions).  So, of course, I picked a wonderful restaurant with a fantastic wine list and great dessert menu and went crazy.

I feel better now thank you.

What I learned from the experience:
  • My body really can't cope with sugary foods such as chocolate mousse and homemade cheesecake as it results in a too rapid heart rate 
  • 1 glass of wine is plenty so DON'T choose that wonderful bottle of wine, go with the house selection available by the glass unless you are with someone able to drink the other 4-5 glasses in a bottle.  For me anything more that one glass of wine results in a sleepless night due to rapid heart rate and "perspiring"
  • Pasta expands in the stomach
  • goes easy on the surf and turf

9 comments:

  1. Really interesting that food can mess you up for a few days. I'm new to this site and am wondering to begin exercising, do I really have to start out at 50 minutes? can I just start at 5 and work my way up?

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  2. One of my favorite joys is food and wine! It was definitely hard for me to adjust my diet for POTS when it is so tempting to eat whatever you want, but unfortunately I usually pay for it later. Glad to know I'm not alone. :)

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  3. It's like aversion therapy...sometimes the prospect of having a couple of glasses of wine just isn't as appealing when you think about consequences :-P

    Kristi - try to start at 15 minutes and go up from there. It seems the most important factor is to keep your heart rate within your range for a specific period of time. It is hard to do but worth it.

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  4. I have a couple of food intolerances on top of my dys and I find that if I eat a banned food (sometimes that wheat filled chocolate cake is worth it) my dys loses it. Though I will say that one glass of wine can be worth it some days. Hope you are feeling better.

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  5. Hey! I'm new to this site, and to pots in general. In fact, I don't even know that I have it. I'm an 18 year old guy (don't seem to be too many guys here do there?) who has been feeling very much different for the past 18 months, and especially the past 6 months I have been so tired that my freshman year in college has been majorly screwed over. Anyway, I feel this post has particular relevance for me - often when I have a large meal I can feel at 50% for many days afterwards. Even a medium sized meal can send me back to bed for a few hours. Guess I have 2 questions: 1) if you can't eat much at a time, how do you get in enough food? I try to snack a lot but I still have large meals every now and then cause I'm just that hungry, and the large meals are killer. And 2) I've been eating salt (only for a week or so) and it doesn't seem to be doing much. Is it ok if I'm just eating it by itself a lot of the time? Cause often I'm sensitive to eating as I said above (as well as also being in college I often don't have any food on me). So... great blog though!!

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  6. Hey one more thing - this brain fog, that I'm hearing so much about... often (like right now), I am there but not there if you know what I mean. Like I can sit here and type this comment without too much effort. And if someone came into my room and talked with me for a while I could do that fine and be animated and all. But if I have to focus on studying or something, or try to do something requiring actual thought, it is nigh impossible. I try to explain how hard I am trying to study to my parents over the phone and I know it sounds very strange that I am sitting there talking lucidly while claiming mental invalidity. Does this sound like your experience with brain fog?
    I am sorry for bombarding you with all these questions! But it seems I may have stumbled across something that might have answers to my questions after all these 18 months. I can't believe you have stayed patient so long. Stay strong and keep blogging!!

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  7. Hi Ben - You should probably see your doctor to get a diagnosis in order to rule out any other cause of your symptoms. Typical method to diagnose POTS/OI would be the Tilt Table Test (see http://en.wikipedia.org/wiki/Tilt_table_test)

    If large meals affect you then perhaps you are sensitive to the glucose? I think most people with POTS/OI feel better when they eat smaller meals more frequently. Nutritionists will probably tell you that smaller frequent meals is a healthier way to eat anyway.

    One of the complaints from people with POTS is "you don't look sick" comments. We may look fine but underneath the looks we feel crappy.

    Brain fog may not be noticeable to others. I KNOW I am only firing on 2 cylinders but I can still brush my teeth and make a cup of tea.

    My advice to you Ben is to see your doctor about getting a diagnosis. AND in the meantime, if you're anything like my kids in college you need to EAT PROPERLY and GET SOME REST. No skipping meals, no Kraft dinner, Mr. Noodle or late-night junk food and buy a good multi-vitmain! ;-)

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  8. Thanks for the advice Elizabeth (and for the rapid response)! I am scheduled to see a doctor when I return home in a few weeks so that's taken care of... I guess I am just curious in the meantime. I've already been tested for celiac disease as well as a bunch of other potential problems. I generally eat impeccably and can't stand junk food but I never thought about a multivitamin, so I will give that a try... as well as exercising more.

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  9. That's great Ben! You may want to try the Greens+ too just because of the iodine content. Might as well rule out mild hypothyroidism which some estimates say 11% of the total population in the USA may be at risk of.

    Hypothyroidism is also a differential diagnoses for CFS and Fybromyalgia symptoms.

    Check out this paper:
    http://emedicine.medscape.com/article/122393-diagnosis

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