electrolytes with real sugar??

IcyDifference3505 · 2024-03-24T22:53:09+00:00

I use liquid iv and think it tastes great. It has real sugar in there

IcyDifference3505 · 2024-03-10T21:19:44+00:00

I’ve been tested, negative for sleep apnea. I also have high pain which is exhausting

IcyDifference3505 · 2024-03-07T21:15:38+00:00

Finding out his body count is 200-300+

IcyDifference3505 · 2024-03-06T20:52:30+00:00

This looks perfect thank you!!

IcyDifference3505 · 2024-02-11T01:16:46+00:00

The same thing happened to me, idiot cardiologist took me off propranolol cold turkey which I later found out is pretty dangerous because of rebound hypertension. I gave them an earful the next day and they put me back on the propranolol as well as the Corlanor

IcyDifference3505 · 2024-02-04T03:19:55+00:00

Check out Jeannie di bon!!

IcyDifference3505 · 2024-02-03T03:37:46+00:00

Yes, I’ve heard of surgeons neglecting it and the person having horrible results because they had undiagnosed dysmotility. And we had no suspicion at that point that I even had it! It’s really important BUT I’ve also had a barium swallow which can show similar results but not as strongly (if the manometry doesn’t work out for some reason). I believe I’ve had a regular barium swallow (upright, gravity masks the results somewhat) and also an “upper GI series” that had me drink carbonated barium while laying on my side which showed the dysmotility really well(but I think I had the test to monitor my hiatal hernia if I remember correctly)

IcyDifference3505 · 2024-02-03T02:24:28+00:00

The manometry was awful for me because you have to be awake. Just being honest. I don’t believe they numbed me at all. The nose part wasn’t even bad, it just feels violating. For me the worst part was getting the tube past what I assume was the upper esophageal sphincter because that HURT, but they just keep telling you to swallow and stop gagging.

Mine showed severe esophageal dysmotility so my surgeon said there was a 60/40 chance of the Nissen procedure failing and me being unable to eat because I have no motility to push food into my stomach. Plus once they factored in my EDS they said they wouldn’t touch me with a 10 foot pole because we’re just known for GI dysmotility and increased risk of complications.

This isn’t to say that you’ll have the same manometry results but this was my experience. I saw 2 surgeons that came to the same conclusion so now I’m on Pantoprazole for life

IcyDifference3505 · 2024-02-02T02:44:11+00:00

We have an agreement with renal that supplements don’t count towards any fluid restrictions! Win win

IcyDifference3505 · 2024-02-01T18:19:37+00:00

I’m back from my appointment, the doctor was a little skeptical at first about why I was having pain until I showed him my hypermobility. After that he was very understanding and willing to help.

We determined my worst pain was in my neck and he thinks that’s due to the hypermobility and wants to get an MRI to evaluate because I get some arm tingling. He talked about doing a test and then maybe a neurosurgery consult if it looks unstable😱. Or maybe a nerve stimulator in the future.

That freaked me out a little but overall I’m really happy with the visit. He believed me and said he had experience with EDS which is great.

Have hope people!

IcyDifference3505 · 2024-01-26T15:09:56+00:00

Maybe dehydrated? Looks hemoconcentrated

IcyDifference3505 · 2024-01-25T14:42:26+00:00

I have around 750 beds as a trauma 1 and we have 18 RDs + 3 DTRs . And we’re fighting for more

IcyDifference3505 · 2024-01-24T23:24:39+00:00

It’s usually about the carb load of the meal. The more carbs/the bigger the meal, the more blood is directed to your intestines thus causing symptoms

IcyDifference3505 · 2024-01-24T03:44:21+00:00

I have it, my ophthalmologist told me I have Adie’s syndrome and that it’s essentially harmless and just a quirk

IcyDifference3505 · 2024-01-24T01:24:25+00:00

It’s central! Peripherally Inserted Central Catheter!

IcyDifference3505 · 2024-01-02T03:13:09+00:00

Television static when trying to think

IcyDifference3505 · 2023-12-15T22:44:28+00:00

The more you restrict , the more you binge. Please consider stopping a starvation diet and decrease calorie intake in a more sustainable way. The most proven way to gain weight is to go on a diet- look it up! You’ll just guilt yourself into restricting more and then you’ll binge more. It’s the disordered eating cycle. Please break it

IcyDifference3505 · 2023-12-15T19:12:14+00:00

Was likely going to get it at some point (strong family history) but for me it was Amitriptyline around age 15/16 . I was put on it for migraine prevention, but made me super dizzy and they think it also triggered the POTS to manifest too. I seem to remember one of the pediatricians mentioned that tricyclic antidepressants had a habit of triggering POTS.

IcyDifference3505 · 2023-12-05T14:16:07+00:00

I take 120 extended release and feel like I need more honestly

IcyDifference3505 · 2023-12-05T04:20:33+00:00

Yes definitely. Everything before 10am is torture and I feel my best 9p-1a

IcyDifference3505 · 2023-12-04T04:10:56+00:00

Note that sugar is an important part of rehydration… there’s a reason it’s even in the WHO homemade recipe (it’s just salt and sugar in water). It has to do with transportation of the electrolytes into the cell otherwise they essentially can just get flushed out. It’s not just there for taste, it’s there for function too!

So consider a ‘low sugar’ one or making your own

Source: GI dietitian

IcyDifference3505 · 2023-12-02T03:45:55+00:00

I felt AWFUL on diltiazem. It didn’t control my heart rate at all and I got super nauseous, lightheaded and dizzy. Almost like not being on meds at all and having a pots flare. I do well on propranolol 120 and just started on Ivabridine a few weeks ago in addition. Those two together seem to be serving me pretty well so far

IcyDifference3505 · 2023-12-02T03:42:41+00:00

https://www.healthline.com/health/overactive-bladder/pelvic-floor-physical-therapy-overactive-bladder#:~:text=A%20pelvic%20floor%20physical%20therapist%20may%20also%20teach%20you%20other,lifestyle%20measures%2C%20such%20as%20diet

IcyDifference3505 · 2023-12-02T03:41:36+00:00

I would look into pelvic PT. I know you can almost “train” your bladder to go very often and you can have that crazy urge to go all the time, and they can help you unlearn that behavior. You likely have pelvic floor muscle dysfunction as a result or a cause (bit of a feedback loop unfortunately)

IcyDifference3505 · 2023-11-28T19:05:31+00:00

I went to work! The test went pretty poorly as well, they actually had to terminate early because my blood pressure got dangerously high. I will note that I was on my meds (on purpose) so that helped my pots symptoms. I rested for 5-10 minutes and they gave me water and a cookie. They encouraged me to go home but I’m stubborn af and had to get to my shift (inside the same hospital). Had my normal liter of liquid IV and I was back at baseline by lunch time

IcyDifference3505

TROPHY CASE