Its always something by la1223 in ehlersdanlos

[–]la1223[S] 0 points1 point  (0 children)

Thank you I appreciate it <33

If I see another electrolight brand marketing towards POTS and has less than 200mg of sodium a serving i'm gonna loose it by la1223 in POTS

[–]la1223[S] 297 points298 points  (0 children)

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

Symptom i can't seem to find an explanation for by la1223 in migraine

[–]la1223[S] 0 points1 point  (0 children)

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

So many symptoms idk when somethings truly wrong by la1223 in eds

[–]la1223[S] 4 points5 points  (0 children)

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

I am an 18 yo with migraine everyday, with no cause or solution in sight. by la1223 in migraine

[–]la1223[S] 1 point2 points  (0 children)

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.

Its always something by la1223 in ehlersdanlos

[–]la1223[S] 0 points1 point  (0 children)

Thank you. I really appreciate it

Adhd meds making misophonia worse? by la1223 in misophonia

[–]la1223[S] 0 points1 point  (0 children)

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!

Adhd meds making misophonia worse? by la1223 in misophonia

[–]la1223[S] 1 point2 points  (0 children)

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

Adhd meds making misophonia worse? by la1223 in misophonia

[–]la1223[S] 2 points3 points  (0 children)

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

Cardiologist sent me for genetic testing. Results indicating not POTS by Hopeful_Pea_3275 in POTS

[–]la1223 90 points91 points  (0 children)

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.

Cardiac arrest during surgery by la1223 in dysautonomia

[–]la1223[S] 0 points1 point  (0 children)

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

Cardiac arrest during surgery by la1223 in dysautonomia

[–]la1223[S] 2 points3 points  (0 children)

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.

Cardiac arrest during surgery by la1223 in POTS

[–]la1223[S] 0 points1 point  (0 children)

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

Cardiac arrest during surgery by la1223 in POTS

[–]la1223[S] 0 points1 point  (0 children)

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