Post-ICU Migraine Crisis: My Stay in the Hospital and After

If you happened to miss Part 1 of 2 in this series, click here to see what you've missed so far:

[Again, as previously noted, I'll do my best to avoid the scary moments to avoid triggering any readers, as this is not the first time I had experienced anaphylaxis, but certainly hope it is the last. I also talk about lack/poor vein access that leads to receiving a PICC line (peripherally inserted central catheter).¹]

A short time later, I was admitted to an observation floor, because of the issues I had due to my anaphylactic reaction days before and the fact that now I was exhibiting extremely scary symptoms: a ton of syncope and remaining unconscious for some time, experiencing major distention, vomiting, and nausea. Thankfully, I didn't have to worry about being accessed through an IV anymore, as I now had a new PICC line in and was soon administered almost every anti-emetic there is (except for the one I'm allergic to).

Free to be discharged

After a few days spent on the observation floor, I was set and free to go home, as the symptoms I was having then were not happening. The syncope only occurred when I was standing and at very random times, like when I'd lift my hand(s) too high or got up to fast, or just plain no reason, I'd spill to the floor - HARD.

It wouldn't be long until I got a workup from my new primary doctor, that based on my history and diagnosis of autonomic dysfunction, that the medication I had a reaction to, likely caused an onset of POTS (Post Orthostatic Tachycardia Syndrome)² - something I'd previously been diagnosed with years and years ago, but never needed to be medicated for.

On and off syncope

Sure, my syncope would occur here and there, some months more than others, but I'd always find something to blame it on - like putting up really tall curtains. I now know that I need to ask for help when reaching up high for something on a shelf, or I'll quickly go down like a pile of bricks. Sometimes, I can feel it happening slowly and just kind of wobble to the floor. Should I have let these episodes go unnoticed by my care team? Absolutely not.

Putting the pieces together

When I left the ICU originally, the thought never crossed my mind that something as simple as one medication could cause an onset of a serious amount of (severe) falls and loss of consciousness. I was barely managing to keep any types of liquid nutrition or even water down, so I blame my weakness for not putting it all together.

A month later...

After all that, still, even a month later, I'm still having issues and had to start home health care to come in and teach me how to administer daily/weekly/etc. fluids, anti-emetics, Heparin, and how to do flushes, take care of my line, etc.

Thankfully, with all of the IV fluids I'm getting now, the terrible migraines are becoming less of an issue and the nausea is, at best, OK most of the time with the anti-emetics I give myself through my PICC line. While I'm still in occupational and physical therapy, I hope to be released soon and get back to normal things like driving.... and eventually work. I really miss work.

Advocating for myself

I hope that there is more I can learn from all of this and pass along, as it's been quite a terrifying adventure for the most part, but a lot of learning (and re-learning). I know some of our community have either/both PICC lines or a diagnosis of POTS in addition to having a diagnosis of migraine. While not being able to have a person to advocate for me was really tough, I'm taking the time to learn from it and have also contacted the administration of the hospital due to the lack of resources and care I received that day. I physically/verbally wasn't able to advocate for myself that day, but I certainly can now.

Hopeful for an update soon

I hope to be able to update the Migraine.com community sometime soon.. not just with good news on overcoming these challenges, but also some educational tips on how I've been able to try to still thrive while receiving home care, not just survive. It's been a really hard lesson of learning how to balance my nutrition, take as much control as I can of my migraines and nausea/vomiting, and dealing with the re-diagnosis of POTS.. while still trying to maintain a life at home, with so many restrictions. I think it's definitely worth me sharing my story if I can help one person (hopefully more) with hydration tips when you're unable to keep things down and how to increase some of your levels from home without having to seek out Urgent Care or the ED for fluids, sometimes, but unfortunately may end up there needing a cocktail of medications to ultimately stop it for the time being.

Stay tuned for some good news!