Evening meal - danger zone

[misseb]

Hello

I have EDS, POTS and MCAS. I struggle so much with the evening meal. Can't eat more than about 200 calories after 7pm otherwise I am zonked out for nine plus hours and then can barely stand the next day and feel terrible. I have tried increasing my fluids and salts after eating in the evening but it's not helping. If I have something important the next day I can't eat later at all. During the day I can only eat small amounts too otherwise I'm in a state of fatigue. I can't seem to work out the logic of the evening meal and was wondering if anyone else struggles too.

[Peter Charlton]

I have pretty much the same thing except that I have given up eating anything at all during the day as it ruins my day for me, I become so exhausted I start acting as if I am drunk.

I therefore only eat in the evening, that way, I have recovered from eating overnight in time for the next day.

[yogini]

Interesting. I also have a much easier time eating later in the day. I think many people with POTS feel terrible int he am and start to feel better later in the day. For me that is definitely true and that's why I can handle eating more (and walking and doing errands) later in the day.   It's helpful to figure out your patterns and follow them, whatever they may be.

Edited October 25, 2018 by yogini

[peachychou123]

It might be worth trying an elimination diet, a lot of POTS patients are particularly sensitive to sugar and carbs among other things. Eating large meals can exacerbate our symptoms as bloodflow is diverted to the GI tract for digestion, which can increase feelings of lightheadedness. My resting HR goes from 75 to 100 after eating carbs. I know when I eat late at night I can't sleep and feel terrible the next day, particularly if it's high sugar, fatty food, or contains chemicals or MSG. The morning after eating Chinese food I ended up almost passing out as my heart was still racing from all the carbs and artificial colors! I know DeliciouslyElla, a POTS sufferer and clean eating advocate, insists a plant based diet with lots of lean protein and veggies worked for her, combined with recumbent exercise to strengthen leg muscles. 

[JaneEyre9]

I second what peachychou123 said. My symptoms got better by addressing intestinal permeability and changing my diet. The physician I saw was an MD in integrative health at the Cleveland Clinic, and she diagnosed me with "leaky gut," which can be healed with supplements and diet changes. My dizziness and fatigued improved as my gut health improved.

[misseb]

Thank you so much for taking the time to respond. It’s the first time I’ve posted things here and knowing you are out there to help means the world. I find this illness so isolating.

The mornings aint sexy. I’m drinking a litre of salted water before getting out of bed and allowing 30 minutes to make the move from bed to standing.

 I have had to eliminate a lot from my diet and now have to control everything. These have gone: all high histamine foods, fermented foods, nightshades, citrus fruits, strawberries, tomatoes, spinach, shellfish and most fish, yeast, vinegars, chocolate, alcohol, wheat, all dairy now only have coconut, refined sugar, carbs - in high amounts, garlic, entire onion family, MSG, processed foods. Some of them ruin me for days. I now shop online and don't go to the supermarket to avoid the temptation of brightly coloured packaging screaming my name. The low histamine chef has been a saviour. I have tried to follow Deliciously Ella but there are still so many things she uses that I can't eat. 

I have managed to reintroduce eggs, avocados and salmon. Fan fare and complete mega happiness and this gives me a protein pass.

Garlic and onion I’m struggling to work out. I wonder if it’s the diuretic effects of them. If I have a tiny bit before say 4pm I can manage the next day, after 7pm it’s game over. In and out of bed the next day blurred vision and staggering unbalanced. I wonder if it’s because I’m able to get my fluids up more if earlier in the day than just before bed. I actually wonder if this is the case for eating in general for me. If there is a sodium levels effect from eating later in the day.

I’m drinking about 4 litres of water a day and having 10g of salt.

I also can’t let my insulin levels drop too low otherwise I fatigue really badly when I do eat - however small it is. I have to snack every two hours - nothing over 150 / 200 calories - or it’s fatigue. And it has to have something naturally sugar’d. A too keto a diet is really  bad news for me even though it would make sense to work given the carb thing. 

This is a stream of words. Sorry. But maybe something in here might also help someone else.

Big love.

xxx