Are more people so severe?

[YippeeKi YOW !!]

Yes. I don't mean that eating isn't a better option. I'm concerned that someone as sick as this may not be able to eat enough to get all the nutrition she needs.

I agree ..... and I think that your recommendation re possibly a nutritionist to oversee a nutrient-dense easy to ingest and digest blend for @Sizzle's daughter is a good one .... and @Shanti1's rec to track calories and macro/micro nutrients thru one of the websites that are really good for that sort of thing is also an excellent one, and would preclude possibly long visits with a hospital dietician.

Either way, it's challenging and difficult and painful to watch someone you love just seem to lose interest and fade away.

But that's not going to happen here, and a lot of that is thanks to the many thoughtful and caring posts here, giving @Sizzle some input and ways to go from people who .... you know ..... know stuff, and/or have been there, done that, and can offer hope of better times coming, and more importantly, ways to get there from here ....

PR rocks !!! .... Swear to God, I'm pretty sure that it saved my life ....

Onward and Upward !!!!

 

[vision blue]

Is it possible the propranolol is sucking away some of her energy?

 

[Sizzle]

Is it possible the propranolol is sucking away some of her energy?

Is this a thing?
Propranolol being bad for the energy level?

 

[YippeeKi YOW !!]

Is this a thing?
Propranolol being bad for the energy level?

Propanalol could possibly be a source of ‘energy sapping’, tho not to the degree that you describe… the side effects are cold fingers or toes, nausea, vomiting or diarrhea, stomach pain, feeling tired, dizzy, or weak, ….

Mestinon … also not likely … side effects are nausea, vomiting, diarrhea, abdominal craps, increased sweating salive/sweating, runny nose, decreased pupil size, increased urination ….

Omeprazole … also porbably not the culprit … the side effects are headaches, nausea, vomiting or diarrhea, stomach pain, constipation, flatulence …


But that said, that’s a powerful line-up of prescriptions. Did the Dr give you any indication of what they’re supposed to do for your daughter, both singly and/or in tandem?

Disclaimer here …. I tend to be somewhat suspicious of Dr’s rec’s and prescribing practices, since they can sometimes be that they’re just throwing stuff at the wall in the hopes that something sticks.

 

[Sizzle]

Subscribed by 2 different doctors; the mestinon by a neurologist who had a presumtion there might be myasthenia gravis in play here, though the results from the tests where minor and she thought it couldn't account for all her symptoms.
And that was 1 1/2 year ago when she was still able to visit the hospital. Basically, she subscribed mestinon to see if her symptons would lessen. For that, my daughter had to up the dose much more than she is able to, so she got to the amount of pills she's taking now (4x10mg daily)

The propranolol by a cardiologist for her POTS related heart rate and omeprazol for her stomach

I've tried to get her to lessen her medicine to see if she could do without or with less, but
At the time, she didn't want to, felt like she was better with than without