• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Passing out left and right - OI crash

Update,

I started having low BP at wake up time for a week, adjusted salt accordingly and BP got better, then on Friday I started passing out left and right. I was scared because in the # 5 or so I hit the floor pretty hard. I called the Cardio and I was asked to go to the ER. I knew I would get better with a IV, but I also knew that I would have to go through the whole ER attitude and end up with 1,000 Bill.

So I decided to just wait it out and see if I could better on oral IV. I end up better but not even close to being ok. Maybe I over did again but something is not quit right, I am close to my period (3 days or so) so this might be related or who the heck knows like always with this crap.

This morning I started feeling despaired because I don't wanna make tough decisions, after the whole morning with diarrhea and weakness and feeling soooo weak I just wanna be taken care of and somebody to make the decision for me. I thought about contacting each doctor of the team but again they are so far and I cannot drive to get there. When you feel so crappy and you are literally drowning in your own shit and barely having blood flow to your brain is hard to make decisions. GOSH THIS SUCKS. I am a bit better and decided to change from pedylite to coconut water since that will not cause the stomach discomfort (not that I can drive to go get it!).

Sometimes I just feel so alone in this fight. Will have to rely on people around me and not feel so guilty for creating work for others. I can't wait to get over my period so things get back to normal. I am really thinking about talking to the cardio to stop periods all together if every month I will go down like this.

Comments

Alea Ishikawa
Hi, Inester7. I don't know your full situation, just throwing some suggestions/thoughts.

If you know exactly what you need, I'd personally go to a walk-in clinic for IV. They might charge $75 instead of the $1,000 ER visit. (Assuming you can get the IV you need at a clinic. Perhaps you could call and ask?)

Is it possible that you may be consuming too many electrolytes? Or do you get this way around your period, regardless of what you take?

There is an estrogen drop in the week before a period, and hormones can certainly play a role in well-being. Weirdly enough, I read higher estrogen should lower blood pressure and low estrogen should increase it in the presence of progestin. Something else might be at play. Have you been able to rule out endocrine, ENT, neurology issues?

I think you also mentioned having low blood pressure in one of your earlier posts. Is this a side effect of medication? Is a change in meds necessary?

I'd suggest contacting your doctor team. Arrange for family/friend to help you out with getting to the doctor's office.

There were times I didn't have the ability to drive and had to rely on someone else. One time, a friend ran and got pedialyte stuff from the store. Sometimes, other people are given the strength to help someone in their time of weakness. I've felt before that I've not wanted to be a burden, but sometimes that extra help is needed. And, yes, it genuinely sucks sometimes... You are not alone.
 
Seven7
I am doing better, increased salt at night (my issue is my sleep BP) and have being doing detox baths for latic acid since I was in terrible pain (that usually makes me even more crash).

So today I am starting to feel decent again. I do have and always had low BP to start (my mom does too), since I have dysautonomia, I need to start w somewhat normal BP so I don't pass out as I stand.

No changes in meds. I got Blood test today, will see how things come back, All thyroid tests are ok (I am hypo but is controlled). Neuro doesn't find anything wrong w me, except some white lesions (is not MS).

I have always gotten horrible periods since I developed. TX for taking the time and suggestions!!!
 
S
Hi I have autonomic dysfunction . This July will be 7 yrs that I infuse 250 ML's of sodium saline every day. I run it in 15 min. It helps bring my bp up. I also take fludracortizone, midadrine, potassium , salt tablets, take kosher salt soaks and use compounded sodium saline nasal spray. I give myself a b12 injection every other week. I've had this since 2004 and have tried anything and everything. Staying away from carbs and sweets helps and eating very small portions helps too. I've had good days , a year in bed (prior to infusing) over 5 yrs in my wheelchair (it dances and I can make it rock)one day at a time.
?? Has anyone tried Northera--Droxidopa ??
I hold onto my faith and fight and try to be positive and thankful but any helpful input will be appreciated!! Hugs , Sunshine smile
 

Blog entry information

Author
Seven7
Read time
2 min read
Views
561
Comments
3
Last update

More entries in User Blogs

More entries from Seven7

Share this entry