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what are your coping strategies?


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Hey all,

Just curious to know how you deal with your symptoms. Mine are getting more severe and I'm starting to feel less and less like myself-- but also have a pretty demanding life/work.

What helps you stay awake and keeps you focused? Is there anything you can do to reduce the brain fog/confusion and stay on top of things? I also have another health problem that makes eating difficult, which is only making matters worse. Are there any foods that are really good in your experience and also super high calorie?

Thanks so much for any of your help.

Em

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I have found that frequent small high protein snacks help me a lot. I have POTS related stomach issues, so I don't do well with raw fruits or veggies but do well with steamed stuff. With brain fog - well, that can be tricky. I take Ritalin in the am and I do light exercises to keep me from getting too fatigued and to keep me alert. But when I get bad and have issues with syncope or pre-syncope ( I have convulsions as well ) nothing really helps - I just have to hang in there, rest, get IV fluids and then start to slowly recondition. I hope you can use this - in your work day as well as at home. Take care of yourself!!

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I find frequent but small meals helps me avoid a lot of the digestive issues, as well as the blood pressure drops I can get after a large “heavy” meal.

I find it helps to lift my spirits to do interesting hobbies with my hands during those times I have to lie down or stay seated. 

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I'm newly diagnosed, so I don't have a lot of advice to give, but I've found that it's good to keep some Ensure around.  I drink that when I'm not up to eating regular food.  It's also easy to take with you in the car or have when you are too busy to prepare food.  I think they have a high-protein version too.  You can get it at the grocery store, Walmart or the drug store.

As far as brain fog goes, my antidepressant has helped with that. 

I was having a lot of fatigue for awhile, and I got some blood work done.  My thyroid levels were normal and B-12 was okay too, but my vitamin D was low.  Now that I take the amount of vitamin D my doctor advised me to take, I feel much less tired.  If you haven't had these things tested recently, it might be a good idea to ask your doctor about it.

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I get saline IVs to help manage the tachycardia.  I have cut down a lot on sugar and a lower carb diet seems better for me.  I try to stay hydrated... I wear a FitBit so I can see if my HR is getting too high and I sit down.  During an "episode" I try to chug water and put my feet up.  I actually set a timer because my episodes usually last about 10 minutes... it helps me stay focused on the fact that, although horrible, they will end.  I also have an at home pulse/ox meter and blood pressure cuff so I can monitor my symptoms if I"m feeling badly.  

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On 2/23/2018 at 4:11 PM, vep123 said:

Thanks all! That's all good advice and I'll definitely try it all out. Do you know of any really inexpensive meal replacements? I have a grad school budget so the cheaper the better.

Well, there are store brands of Ensure, and I think there is a powdered version.  It's not mac 'n' cheese cheap, but it's so much better for you than stuff like that.  

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I don't know how you do with caffeine, but for me coffee helps a lot. It's a vasoconstrictor, so it helps with blood flow and dizziness, plus it helps me clear the brain fog. 

My office knows me as the girl who lives on a steady stream of alternating between caffeine and Gatorade lol. 

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When I had severe weight issues I used Garden of Life meal replacement as a supplement to meals/TPN.  I couldn’t tolerate Ensure or any with whey protein.  I ate a lot of nuts and nut butters for calories too.

For brain fog I rest, get the best sleep possible and occasionally take modafinil.  Some people take Ritalin.  You need a prescription for both.  I also find exercise, both strength training and light aerobic, seated, helps.

 

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