The Northera Update

The Northera Update - A roller coaster ride of emotions.

Photo by Priscilla Du Preez on Unsplash. [Image Description: A grey scale picture of a roller coaster track. The tracks twist and turn, go upside down and sideways. A perfect representation of how Northera made Dannie feel.]

Where do I begin? I drafted a post a few weeks ago, thinking I’d finish it and publish it right away. Well, I never got around to doing that, but I also didn’t want to delete it altogether. Instead, I chose to leave it as is and then give you an update afterward. Without further ado, here is The Northera Update.

Y’all, I am struggling. You may or may not remember that I started Northera (A.K.A. Droxidopa) a little over a month ago. My cardio/POTS specialist switched me from Midodrine after he diagnosed me with severe Orthostatic Hypotension. Well, if you’re wondering how that’s going, we left my doctor’s office a message asking if I could switch back to Midodrine as soon as safely possible. Waiting on a call back, which is annoying because I feel incomprehensibly awful and I just want it to stop.

Due to my sleep pattern and brain fog, I’ve only been able to get Northera up to four pills twice a day. By now, I should be on six pills thrice a day, but, ya know, who can wake up early enough to have three meals a day? Not this Chronic Fatigue (CFS/ME) sufferer. Sometimes I don’t even wake up with enough time for two meals, hence why it’s taken me so long just to make it to four pills per dose.

Anyway, the point is, I feel like crap. I always feel like crap, but it’s like Northera turned up the volume and all of my usual symptoms are amplified. Which is, you know, the exact opposite of what was supposed to happen. I was hoping the side effects I’ve been experiencing would get better as I increased the dosage, but now I think if I go any further I’ll wind up in the hospital. I’m not even exaggerating, it really does make me feel that awful!

Once Northera wears off, as well as the crash that follows it, there’s this moment of peace where I’m not on any medication at all and I feel my base level of crappiness. That’s how you know the medication you’re on needs to go. When you would rather take no medication and feel like shit instead of continuing with the one you’re on.

Okay, back to the present! My doctor’s office returned my call a couple of days later, agreeing to switch me back to Midodrine. It turns out I wasn’t the only one that called to complain about Northera side effects that week, either.

Starting over with Midodrine has been rough, but not nearly as rough as when I was on Northera. My doctor told me to have a break day, where I wasn’t on either of the medications, before I was safely allowed to make the switch. I was dizzy as hell and nearly passed out in the shower, but the key point there is that I was able to take a shower in the first place. I’m not going to lie to you, it had been exactly two weeks since I was up to showering previous to that. I even blow-dried my hair, which I never bother to do, because I was so damn excited to have clean hair again!

I’ve now been on Midodrine for two whole weeks. Having to start from the beginning, increasing my dosage once a week, has been tedious, but very worth it. I knew I felt awful on Northera, but I didn’t realize just how awful until last Saturday, when I increased my Midodrine dosage to two pills a day. My head is clearer, I’m not nearly as dizzy, and I had enough energy to organize the mess that has been my bedroom since I got rid of that one piece of furniture. It’s still a mess, but a little less of a mess, which is good enough for me.

Yes, I feel better than I did on Northera, but I’m not 100% functioning. I’m still bedbound most days. Though Chronic Fatigue Syndrome is mostly to thank for that now, not dizziness. My blood pressure is still low, as well. As you can imagine, that’s really not helping my fatigue level. I’m hoping my low BP will improve this coming Saturday, when I increase my Midodrine dose two three pills a day. My doctor and I worked it out so I’ll be taking two with my first meal and one more with my second meal (A.K.A. dinner). I wasn’t waking up early enough to get in a second or third dose before, so I’m interested to see how this is going to turn out!

Overall, I’m glad I gave Northera a shot. I had heard mixed reviews from friends in the chronic illness community who had taken it/are taking it. Some did really well, and others, like me, felt worse. I’m choosing to view this experience as one step closer to rejoining the outside world. The idea of actually being able to do that one day is both motivating and terrifying, but that’s a blog post for another time…