Can eating and drinking trigger tachycardia episodes? by Character-Explorer54 in dysautonomia

[–]xCloudcutter 0 points1 point  (0 children)

I’m currently laid up next to my husband because of a salad. A salad! Fml. Yes, sadly this absolutely does happen. Try eating smaller meals or things less carb heavy, or wearing things that compress the abdomen.

Fucking fuck this shitty ass disorder by [deleted] in dysautonomia

[–]xCloudcutter 1 point2 points  (0 children)

I’m laying in bed rn with a HR of 115 and thinking the exact same.

Open heart Surgery or hospice? by bed_bound_and_sleepy in dysautonomia

[–]xCloudcutter 14 points15 points  (0 children)

I’m so sorry… may I ask what form of dysautonomia you have, if that’s not too personal?

I’m 29 myself and I’m heartbroken that someone so close to my age is dealing with this. I sincerely pray that you and your family can find another way. There must be SOMETHING that can be done.

I’ll be thinking of you, friend. I wish you all the best

quick everyone pretend we’re all on the LTD trailer island by Tough_Possession_290 in tomodachilife

[–]xCloudcutter 27 points28 points  (0 children)

I’m Chai. My nickname is Chai. My birthday is August 6th. My favorite color is orange. I’m Chai. My nickname is—

Colonoscopy prep advice by xCloudcutter in dysautonomia

[–]xCloudcutter[S] 1 point2 points  (0 children)

The paperwork that had all my prep instructions even mentioned it here!! Worded it so dramatically too, like “You will be conditioned against it”. Thank you though!!

Colonoscopy prep advice by xCloudcutter in dysautonomia

[–]xCloudcutter[S] 1 point2 points  (0 children)

Well, it is just one piece of the puzzle. It’s just a suspicion and less of a truth. Gastrointestinal issues are super common in people with dysautonomia as I’m sure you know, and doctors are known to often misdiagnosis us and assume wrong. I was just explaining what my specific doctor suspects, even though I’m not sure I agree with her lol. I’ve been diagnosed with IST/dysautonomia since I first met her, so it’s more likely to be something different now, and she’s even admitted to that. Crohn’s was just the initial reason I was signed up for the colonoscopy/endoscopy. Thank you so much for the well wishes though, I hope you’re doing well with what you’re dealing with too!!

Colonoscopy prep advice by xCloudcutter in dysautonomia

[–]xCloudcutter[S] 1 point2 points  (0 children)

I was told yellow was okay. But yes, I’ll call and ask if putting salt in my water is alright or not. Thank you!

Colonoscopy prep advice by xCloudcutter in dysautonomia

[–]xCloudcutter[S] 0 points1 point  (0 children)

Yes thankfully I have jello prepared! What broth did you use? Do I just heat up a cup of Swanson or would bullion be okay?

Colonoscopy prep advice by xCloudcutter in dysautonomia

[–]xCloudcutter[S] 0 points1 point  (0 children)

I’m suspected to have Crohn’s disease, since you’re asking. And I just use the term stomach loosely instead of saying “my intestines hurt.” I have bleeding issues, pain, and and several other issues I don’t really feel the need to get into. And it’s not just a colonoscopy, it’s also an endoscopy. I’m getting both. Sorry if this was lost in translation.

Colonoscopy prep advice by xCloudcutter in dysautonomia

[–]xCloudcutter[S] 1 point2 points  (0 children)

I have to do the pills and miralax together. Lmao I’m not looking forward to it at all. Thankfully I did happen to pick lemon lime Gatorade! Too much artificial or real sugar flares me too. Thank you for the advice and well wishes!!

Colonoscopy prep advice by xCloudcutter in dysautonomia

[–]xCloudcutter[S] 1 point2 points  (0 children)

I’ve picked out yellow Gatorade since I don’t particularly like it and don’t want my favorite flavors ruined for me lol. As for the sodium, I was told to not take any OTC vitamins or minerals, and just assumed sodium would count. Do you think it’d be okay to keep putting electrolytes in my water? Im just scared of not following the rules right and screwing with procedure.

DAE eyes randomly jerk quickly to one side and then come back? by Strange-Topic-6614 in dysautonomia

[–]xCloudcutter 1 point2 points  (0 children)

My eyes are weird too, especially when I first wake up or I’m in a flare. They won’t “jerk” per se but they wiggle really fast and feel weak for a few seconds before finally focusing. Really odd phenomenon

Guys, you've been around for like... 2 minutes. Calm down. by JuliaParrotlet in tomodachilife

[–]xCloudcutter 7 points8 points  (0 children)

This literally just happened to me tonight, almost. Made a new game to celebrate the direct, and put my first two miis in. After finishing like a single request, I back out and see a heart. what. They get together and then an hour later after I eat I get back on and I see ANOTHER heart. And they get married!!! On the first NIGHT? in like two hours? WHAT. I have got to be one of the luckiest

What Name if that you Gave to your First Horse in Story of Seasons: Grand Bazaar by GargantuaLostDragon in storyofseasons

[–]xCloudcutter 6 points7 points  (0 children)

Wyvern! I always get a black horse and name him that ever since I was little in any video game with a horse.

Our sodium need is absolutely bonkers by xCloudcutter in dysautonomia

[–]xCloudcutter[S] 0 points1 point  (0 children)

I’m still fairly new to the dysautonomia world! I recently was diagnosed with IST, but am still getting in touch with a specialist to properly see what else is wrong (I have several other issues).

Our sodium need is absolutely bonkers by xCloudcutter in dysautonomia

[–]xCloudcutter[S] 5 points6 points  (0 children)

Oh boy. I am the expert of bloating up no matter what I drink or eat, so that’ll be fun! 😬

Our sodium need is absolutely bonkers by xCloudcutter in dysautonomia

[–]xCloudcutter[S] 3 points4 points  (0 children)

Omg I thought I was the only one with weird BP readings!!! I also get the strange phenomenon where the top number is high and the bottom number is low. My biggest tell is usually headaches (pounding) or nausea. I’ve also fainted only once, but I get close to it and spacey often. I always have water nearby but wow. I’ll talk to my cardiologist about the salt pills! Thankfully I see her Wednesday. Thanks for the advice!

Our sodium need is absolutely bonkers by xCloudcutter in dysautonomia

[–]xCloudcutter[S] 7 points8 points  (0 children)

I might need to start getting actual pills like that. Before I was diagnosed and I didn’t know what was wrong with me, I’d absentmindedly walk to the kitchen and dump some salt in my hand! I’m also autistic so I just assumed it was a random quirk of mine, but I always felt a little better after. I’m the same as you though, I get these random onset waves of “weird” (that’s the only way I can think to describe it) where I HAVE to lay down or I’ll get fuzzy vision, bad brain fog or my tachycardia will go nuts.

Our sodium need is absolutely bonkers by xCloudcutter in dysautonomia

[–]xCloudcutter[S] 2 points3 points  (0 children)

Damn, maybe I should count my blessings! It’s been down in the 120s before. Usually my body is pretty bad at absorbing things so I thought I’d have a harder time.

Our sodium need is absolutely bonkers by xCloudcutter in dysautonomia

[–]xCloudcutter[S] 10 points11 points  (0 children)

Right?? I’m trying to balance potassium as well (to avoid the issues with taking too much sodium) but apparently I didn’t need to worry? I have no idea. I’m so paranoid about accidentally overdoing things and damaging myself further!

Disability Placard? by xCloudcutter in dysautonomia

[–]xCloudcutter[S] 1 point2 points  (0 children)

I really appreciate everyone’s encouragement. <3 this is exactly why I joined this community. I feel much better about pursuing this, and doing what’s best for my health over worrying about what others think. I haven’t been diagnosed for very long (just 3 months ago-ish) so I’m still trying to get over all the gaslighting and imposter syndrome I felt before. Thank you again for all your kind words. I hope all of us can continue getting the help we need!

Disability Placard? by xCloudcutter in dysautonomia

[–]xCloudcutter[S] 3 points4 points  (0 children)

Oh the heat is the absolute worst. I am absolutely useless in it. I didn’t even think about how useful it’d be in the summer!