How POTS and Concussions Have Affected My Migraines

I've had POTS for over 12 years now, but none of my symptoms were as severe as they are now. I knew after I was diagnosed, I put together things inside my head that would trigger a blackout - which was really hard to find out, safely.

A culmination of diagnoses

I began experiencing POTS symptoms around the time when I was diagnosed with cyclic vomiting syndrome (CVS). As you can imagine, vomiting every 3-4 minutes, including on your 45-minute drive home from work, it was an awful time period in my life, only to find out I had small fiber neuropathy, autonomic dysfunction, and POTS within the same year that we tried treating my CVS.

Limited treatments

Along with some of the diagnoses I mentioned briefly above, many of the treatments were anti-emetics (anti-nausea) and IV hydration therapy. Living across the street from a hospital while living on campus was a godsend. I was a frequent flyer there, as I also got infusions for my Crohn's disease. But with all my diseases in common, and more recently, gastroparesis, IV fluids and blood pressure meds have been the only thing that has helped me somewhat… until recently.

One POTS episode after another

This year has been one POTS episode after another. If you're not familiar, it's a form of syncope when your brain doesn't necessarily catch up to your heart at the same rate. I run very low blood pressure already, so it's been extremely hard to find something that works.

After the initial syncope/blackouts, it takes me a while to recover and several minutes to get up and regain my composure and re-establish my surroundings. While waking up from an episode is scary and honestly emotional, the after-effects hit me the worst.

Worsening migraine

They affect my migraines, so imagine a day that every time I get up and blackout, my migraines get worse, I get even more dehydrated, and my blood pressure dips even more. This cycle is absolute torment; it knocks all energy out of my body, leaving me to feel as though gravity doesn't exist. There is also the existential dread of feeling like you're going to throw up constantly and migraines only worsen. The pounding pain, like banging drums, that noise-canceling headphones don't even touch.

Worsening hemiplegic attacks

I live with generalized migraines and hemiplegic migraines (HM). When I am dehydrated and malnourished, my HM symptoms hit the roof, and really, those days are horizontal days with the assistance of my partner, who helps me get to the bathroom to make sure I don't fall and hit my head. It makes things pretty hard when he works day and evening shifts, leaving me alone. I'd never been scared before an incident that resulted in a head injury that has not let up, even 2 months later.

A concussion on top of it all

Recently, I experienced a concussion as a result of a fall due to POTS and have had the worst migraines I've ever had. They feel like they'll never stop and now. When I get onset symptoms, I vomit right away as opposed to the occasional migraine nausea and vomiting.

Switching and resuming medications

Now, when syncope starts, the nausea and headache are instant, and no migraine medication helps. Hopefully, I won't continue to have these issues as I switch to another POTS medication, and I can resume my verapamil, my migraine medication. Another problem with that is that this medication has the potential to bring your blood pressure down. Due to all my recent falls, I've had to hold off this medication, as it can potentially do more harm than good when I am in a troubling place blood-pressure-wise.

I'm doing my best

I'm doing my best to make sure I stay hydrated, I'm still holding all 3 medications that affect my blood pressure and heart rate, but right now, it's not enough. So today, I did what's best for me and asked about other medications. I am also getting retested, potentially through a specialist who cares for patients with autonomic dysfunction. All I can do is hope for tomorrow that the falls will be less, the IV infusions will help with my blood pressure and heart rate, and pray that an atomic migraine doesn't come at me in full force.

Questions for you

Have you been diagnosed with POTS at all? Do you worry about losing your independence with your worsening migraines? If you've had concussions, do you find that it has a permanent/long-lasting effect on your body, and do you feel like every day is always the day after a serious concussion (the worst day ever)? Do any of you do infusion therapy like IV fluids or meds at the infusion clinic? Have they helped?