So I'm back after a longer-than-intended hiatus. After it's been a while, I start thinking "Should I just abandon it? Would it be weirder to come back?" But then I say, "Self, don't abandon another blog. Stick with it. Even if there are huge gaps between posts, stick with it." Do you ever have that conversation with yourself?
Anyway, I moved into the city, dealt with 3 viruses in 4 months, went to visit family in the Snowy North for Christmas, and recently embarked on a new treatment plan for my illnesses. The new treatment plan was not something I was eager to do, and not something I decided to try lightly. I've been on the same medications for a couple of years now, and my body is extremely sensitive to any kind of drug, so it takes a lot for me to gather my courage and tell my doctor that it just isn't working.
Let's back up. When I was first diagnosed, the diagnosis was made by a cardiologist at a heart hospital after months of different tests. I was relieved to get a diagnosis, but quickly felt more bewildered than anything else upon researching these illnesses that share my body with me. With POTS, there is no one standard treatment. I don't think it's an exaggeration to say that every single case is different, and my current doctor agrees with me. Anyhow, the cardiologist I was seeing assured me that people "rarely die from this" and that I'd be fine so long as I took the medication they prescribed, ate lots of salt, drank at least 2 L of water a day (!!), and eased into cardiovascular exercise. The medications included an SSRI and a steroid. The steroid, Florinef, gave me awful migraines to the point where I couldn't get off the couch. Adjusting to the SSRI was nearly as bad; it made me severely nauseous for about 2 weeks and I could barely move. I ditched the Florinef and stuck with the SSRI, which reduced the fainting episodes. However, it triggered side effects, including intermittent night sweats. They would come and go, but the longer I was on the medication, the worse they became. My cardiologist didn't seem concerned in the least about this and just added Wellbutrin to my meds and told me to salt load. Every appointment with him lasted about 3 minutes, and I knew he didn't really understand or care about understanding what I was going through. I also had some other strange neurological symptoms, so I decided to start seeing a neurologist, the only one in my state who treats POTS. He was honest with me and told me he hadn't treated that many cases, but he listened to me and asked questions and asked how I wanted to proceed with treatment. We added another medication, reduced the SSRI dosage, and kept the Wellbutrin. He suggested another steroid, but I refused after my experience with the first one.
With that plan, I wasn't feeling awesome, but I was feeling better. However, last fall the night sweats went from intermittent to constant. I'm talking so severe that I sweat through my pajamas, soak the sheets, have to get up in the night to strip down and rip the sheets off, wipe down and wrap myself in a towel and go back to bed, only to sweat through the towel as well. At this point, I haven't slept a full night through in months. I believe it has been lowering my immunity as well, and recently I've been losing quite a bit of weight, too. My heart rate still gets out of control, topping 215 bpm at times when I hike or exercise. Last week, I felt desperate enough to call my neuro for an appointment. I just don't know how long I can sustain the night sweats or dealing with heart rate spikes like that. He was able to see me the day after I called (amazing!), so I made the hour-long drive to his office.
As way of greeting, he said "I feel like I understand this illness so much better since the last time I saw you." I asked him why, and he told me that in the past several months his wife actually had actually come down with a mild case of it! He told me he has so much more sympathy for patients like me, and he also said that the truth is that the medical community knows nothing about this illness. He has some theories, and he monitors his wife's symptoms, and he seemed genuinely curious about my experience. He spent a good 20-25 minutes with me and we decided to try a new approach--one that is more heart-focused. So, over the course of the next 9 weeks, I will be weaning off of the SSRI and the Wellbutrin and then adding a beta-blocker. Following that, I will probably start a blood pressure stabilizing medication since without the anti-depressants my BP tends to drop dangerously low.
The one semi-bombshell he dropped was that the night sweats may not be related to medication. They may actually be an indication of premature ovarian failure, which can be closely linked with POTS and autonomic disorders, and many women with POTS experience this. I'm hoping it's just SSRI side effects. Time will tell.
I'm optimistic but nervous. Right now I'm on day 4 of a half-dose of the SSRI and feeling quite tired. There has been no change in the night sweats as of yet. This may be a long spring as my body recalibrates to new meds. I have all sorts of fears, like what if I pass out at work? What if I'm too exhausted to get out of bed on a work day? What if I'm jogging and my blood pressure plummets and I collapse on the sidewalk? So many what-ifs. But I suppose things like that could happen to anyone, at any time, so I'm trying not to dwell on them.
Instead, I am looking at the positive things in my life, such as: starting my spring vegetable garden, planning for a trip overseas, and enjoying a new relationship (!!).
