Eating Healthy & OI is worse?

[sean82]

Hello all,

I recently started eating like a champ. I am eating lean protein, fruits and veggies, hydrating with Pedialyte and coconut water and I am still way lightheaded and feel tightness in my chest. I take Ivabradine to control HR but what can I do to alleviate the orthostatic intolerance? Adderall I can not tolerate and I am looking for an answer.

I saw Dr. Barboi in Glenview but maybe I should go back? I really need to address the lightheaded almost faint feeling? Any doctor or suggestions are helpful.

 

Thanks,

Sean

[yogini]

What was your total salt intake before and after the diet change?  Your new diet could be very low in salt, even with the Pedialyte and coconut water.

[sean82]

I have not measured salt. Thats a good point! How do I track my salt and get it to the right amount??

thanks!!

[kalamazoo]

download myfitnesspal and log everything you eat, you can see all of your nutrition data. I have insulin resistance and i feel horrible when i eat wrong. even the slightest thing off affects me

[sean82]

How do I find out what my insulin situation is? I know some people with ME/CFS have diabetes insipidus. I suspect I have a metabolic/ endocrine issue. I can log but I dont know what to look for.

 

sean

[kalamazoo]

You should get an oral glucose tolerance test. you fast, get blood work, then drink a solution of basically pure sugar and come back 2 hours later so they can check both your blood sugar and insulin levels. Since i was diagnosed i feel soooooo much better now that I know why i felt so horrible. When my blood sugar and insulin levels were really high I felt HORRIBLE, it aggravated my pots symptoms so much it's crazy i feel so much better now and i've already lost 20 lbs in a month

[Lemons2lemonade]

The first line of defense is salt and water. If that doesnt work, you can always talk to your Dr. about florinef/fludrocortisone...i don't know alot about ivrabadine or how they would interact together. For me the salt and water didn't cut it. Neither did metoplerol(beta blocker), or midodrine. I definitely avoid garlic though not sure if you are using that in your new diet...i actually started eating garlic before being diagnosed thinking it would help me...ha. Basically any food people with high blood pressure are supposed to eat you may want to avoid. Also for some reason pedialyte made my chest tightness a lot worse. Coconut water and revive vitamin water are my go to's now. I really like the revive because it has b12 in it which feels like it gives me more energy.

[marcus99]

For me the easy to digest stuff (refined grains/sugars etc.) gives me the least symptoms.

I know that it isn't "supposed to be healthy" but it greatly reduces my post-meal fatigue.

Eating VERY low fat also helps me with this. And not too much protein (enough, but no extreme amounts).

I think in my case it might be caused by less blood being needed by my stomach for digestion.

 

[yogini]

I drink organic broth when I need salt because I couldn't find anything else that works.  Hydration drinks don't have much salt and natural foods have virtually none.  A higher salt diet has made a noticeable difference for me.

[sean82]

Ok all of this is very much appreciated. I will start loading salt into my diet!! And drinking more cocnut water..

[Roxy]

Be careful with the coconut water and how much you drink because I ended up with potassium issues, the doctor said it is a fine line with some of us potsies. One could be fine and a second enough to put you over or 4 is fine and number 5 does it.

[jknh9]

I went completely Paleo for a bit and had a difficult time. For me, I need the grains and carbohydrates and did not do so well with higher amounts of protein and fat. I still like the science behind the Paleo/Primal way of eating, but honestly I feel better eating some bread and rice and oats, so that's what I do. Sweet potatoes and pumpkin are also good sources of carbs for me. And of course the salt and fluid stuff like everyone else mentioned  And definitely coconut water! That stuff helps me more than anything else.

[Bookworm1919]

I do a lot of cooking and healthy eating, and it's REALLY hard for me to get in enough sodium on a healthy diet. The easiest way for me to do it was salt tablets - you can buy them, or make them yourself. I buy a big bag of empty capsules and encapsulate Himalayan pink salt myself, then just take 2 with a meal. I also use electrolyte tablets if I'm going to work out. You might like this better than pedialyte, which has a lot of sugar and is pretty expensive.  

[momtokippy]

On 4/12/2017 at 10:42 PM, kalamazoo said:

You should get an oral glucose tolerance test. you fast, get blood work, then drink a solution of basically pure sugar and come back 2 hours later so they can check both your blood sugar and insulin levels. Since i was diagnosed i feel soooooo much better now that I know why i felt so horrible. When my blood sugar and insulin levels were really high I felt HORRIBLE, it aggravated my pots symptoms so much it's crazy i feel so much better now and i've already lost 20 lbs in a month

So what did you do to feel better? What changes or meds to you take for the insulin resistance.

[kalamazoo]

I feel a million times better when i eat small meals. I also fast a lot which helps too. I'm vegan and gluten free and still am which has also helped too. No meds yet but I'll need metoprolol if my diet isn't enough to help fix my insulin resistance. I eat a very low carb high fat diet. (Keto) i don't follow aany diet meticulously but this is kind of what has helped me make guidelines