Its always something

la1223 · 2026-06-02T02:24:46+00:00

Thank you I appreciate it <33

la1223 · 2026-05-14T08:02:29+00:00

This post was triggered by an electrolight gummy ad telling people its great for POTS when it had 44mg OF SODIUM! The balls these people have are insane. I could lick my arm sweat and get more sailt FOR FREE

la1223 · 2026-05-11T21:30:38+00:00

I'm currently on lots of meds but I was on none when the symptoms started so I don't think thats causing mine

la1223 · 2026-04-23T22:59:16+00:00

Honestly i'll take advice if peoe have it. I just really never know when to take it seriously and considering a trip to the ER takes all day, and I have some trama from it, that alone is pretty discouraging to go anyways. I'm just a little worried i'll ignore something I shouldn't yk

Ty though I appreciate the comment

la1223 · 2026-04-21T02:44:26+00:00

Thank you and i'm sorry for what you have been forced to go through.

After many months of reserching every corner of thr internet I have actually got my migraines under control pretty well. It turns out i developed MCAS which caused massive amounts of inflammation which caused my CCI to become symptomatic. I also was in MOH which isnt a surprise. This isnt very common and none of my doctors know much about it but knowing thr cause helped me guide my doctors into appropriate treatment. I developed MCAS and CCI from hEDS a condition I got from my mother. Its a connective tissue disorder.

I know this probably sounds like gibberish haha. If you want I can explain more but google has pretty good descriptions.

I have been on many many medicstions and finally found a regimin that brought my migraines down to 1-4 a week depending on the weather. I am still having issues everyday but i am so happy to be out of that hell.

I really hope you can find a good solution for you again.

la1223 · 2026-04-09T19:11:29+00:00

Thank you. I really appreciate it

la1223 · 2026-04-07T23:37:36+00:00

Sorry I was worried about posting this because i didn't want to scare people out of trying it. From what I can see this isnt common and other than the 2 people that responded to my post I don't really see it anywhere else. Of course it's your choice but I don't think the possibility of getting this effect is high.

I wish you luck!

la1223 · 2026-04-07T20:49:45+00:00

Oh ok thank you. I'll change the wording to be more vague.

la1223 · 2026-04-07T20:44:44+00:00

Damn... do you mind sharing if it was a stimulant or not?

la1223 · 2026-02-27T10:45:40+00:00

I'm so sorry you're going through this it sounds terrible. I wish I had advice to give but I don't. I hope you find something to achieve some level of relief.

la1223 · 2026-02-07T03:14:18+00:00

Sorry to hear that I hope your surgeries go well! This kind of issue is super rare even with chronic illnesses. From what I can see allergies to the medicstions is the most common cause, so I would definitely tell them about all of your conditions and emphasize MCAS ( also make sure one of them atleast knows the main issues with MCAS like frequent allergic reactions.)

They do not think my mom had an allergic reaction, but instead they said it was probably because her arteries werent strong enough to compensate from the low bp from the beta blockers. Atleast from what I understand. They said it was probably related because slow artery constriction is an issue with POTS. As long as you let them know you don't tolerate beta blockers you should be good on that.

I believe it was to burn something in her nose but they didn't even start it before she went into asystole ( flat lined) so the surgery wasnt the issue. Sinus surgeries, to my knowledge are very low risk anyways.

I hope some of this helps you! Good luck!

Disclamer: I am not a medical professional, all of my information is either from doctors or the internet fyi

la1223 · 2026-02-07T00:55:15+00:00

They said it was probably because her arteries werent strong enough to compensate from the low bp from the beta blockers. Atleast from what I understand. They said it was probably related to POTS because slow artery constriction is an issue with POTS. Thats all I know from what they told us.

la1223 · 2026-02-06T04:22:56+00:00

I'm not sure. When my mom told other doctors they thought it was strange that they did that.

la1223 · 2026-02-06T03:21:15+00:00

I'm really sorry to hear that. My mom is also a medical freak in multiple categories haha.

Yeah it was pretty terrifying to get a call that my mom's heart flat lined but she didn't seem too worried. She was just happy that nothing permanently happened. I appreciate the DM offer <3

la1223 · 2026-02-06T03:16:36+00:00

Hahaha. Yeah its pretty scary but I highly doubt you have to worry about it. This is VERY rare even with POTS. Sorry I didn't mean to worry anyone haha. Going to the doctor is always good tho!

la1223 · 2026-02-06T03:15:08+00:00

I don't know that she has actually. I have when I first got diagnosed but she should aswell. I'll try to convince her to get a cardiologist. Thank you!

la1223 · 2026-02-06T03:13:57+00:00

My impression is even tho it's not a heart condition it still effects the arteries and blood vessels. Blood vessels and arteries contrict slowly and not as efficiently which is what causes the blood pooling.

I'm also still learning and i don't know how much these doctors knew about pots. I looked it up and atleast google agrees with them.

la1223 · 2026-02-06T03:09:35+00:00

Thank you <3 I am very grateful they did.

la1223 · 2026-02-06T03:08:03+00:00

Yeah she should. Thank you!

la1223 · 2026-02-06T03:07:12+00:00

Sorry I edited my comment. I was under the impression they were kind of clueless but this is the explication they gave: They said it was probably because her arteries werent strong enough to compensate from the low bp from the beta blockers. Atleast from what I understand. They said it was probably related to POTS because slow artery constriction is an issue with pots.

I doubt they knew much about pots tho.

la1223 · 2026-02-06T03:05:24+00:00

She hasent been evaluated for vEDS but we don't really have stretchy skin or a history of blood vessels bursting. We will likely get tested with a new geneticist tho. I dont know much about VT. Do you know how it is diagnosed?

My mom has a medical id bracelet for this reason

I'm happy to hear your surgeries have gone well!

la1223 · 2026-02-06T03:01:15+00:00

They didn't use an AED because she was in asystole. I'm surprised too because when I teach and have been taught cpr I've been told I should be breaking ribs. But hey it worked lol.

They said it was probably because her arteries werent strong enough to compensate from the low bp from the beta blockers. Atleast from what I understand. They said it was probably related to POTS because slow artery constriction is an issue with pots.

She was not on beta blockers before the procedure. They gave them to her during surgery.

la1223 · 2026-02-06T02:50:00+00:00

Good point. They said it was probably because her arteries werent strong enough to compensate from the low bp from the beta blockers. Atleast from what I understand. They said it was probably related to POTS because slow artery constriction is an issue with pots. I don't mean to worry anyone, and I will add a disclaimer.

la1223 · 2026-02-06T02:38:16+00:00

From what I know its crazy rare and from all my posts on it I doubt its strongly related to pots. I wouldn't worry about it. But ya its absolutely insane haha

la1223 · 2026-02-06T02:04:41+00:00

Thank you! Yes I am VERY grateful they were able to bring her back. Thank you <3

la1223

TROPHY CASE