For the past 6 months or so I’ve been experiencing the worst flare of POTS I’ve ever had. This has been hard in so many ways but one of the scariest parts was that I had no idea how I would eventually come out of this. Without knowing an exit strategy I feared it would just go on forever. There’s no roadmap and doctors can only give vague ideas about recovery time. Strategies don’t work for everyone so I just had to trial them and keep the ones that helped. The reason there are no how-to guides for this is that everyone experiences flares and recovery differently, but I wanted to at least write about my experience of it. I think if I had been able to read a number of other peoples experiences I would have been less scared and felt less alone. All I can do is put my story out there and hope that others do the same.
The first questions in my mind were what caused this flare to happen and how do I make sure it never happens again? It's forever a learning curve to figure out what things will aggravate my symptoms but in this case there were actually two main factors. The first was that I had undergone a very effective depression treatment and had consequently gone off my SSRI medication. I knew that many POTS patients were on SSRIs but I wasn’t aware of all that it was doing for my POTS symptoms in particular. As it turns out, it was doing quite a lot.
The other factor was a pair of infections I had about a month apart at the beginning of this flare up. POTS has an autoimmune component to it and infections are known triggers for autoimmune symptoms. Historically the times I’ve had the most trouble with infections are when I have 2 or more of them in quick succession.
There’s nothing I can actually do to make sure this never happens again but there are things I can do to minimize the likelihood and severity of flares. First, I can consult with my POTS specialist before making any changes to my medications. This feels a bit daunting since POTS is one of many conditions I live with and medicate for, but it’ll be worth the extra leg work if I can avoid flares like this in the future. The other thing I can do is trickier; which is avoid infections as much as possible. I won’t be able to, nor am I willing to, take the steps necessary to totally avoid all risk of infections. I won’t be living in a bubble from here on out. But I will be as cautious as is reasonably possible with infectious diseases. I’ll be wearing my mask in public, I’ve asked my friends to let me know if they have any symptoms, not just of COVID but of anything infectious, and should I come down with something I will basically go into a bubble for a good while until I’m confident my immune system is totally back up to snuff.
This flare was severe enough that I couldn’t take care of my own most basic needs for an extended period of time. The worst time was at the end of February and throughout March. During that time I was unable to make my own food, walk to the kitchen for water or food, or shower. For a while it was even difficult to sit up and reach for something on the other side of the coffee table. I managed to get myself to the bathroom but I experienced extreme and immediate symptoms in doing so. It was truly an awful time.
I was lucky to have an incredible support system in the form of my husband and our friends. My parents, though they live far away, have spent hours talking to me on the phone either because I’m bored out of my mind or upset. Our friends have brought food, done dishes, driven me to appointments, spent time with me when I’m lonely, and given me more pep talks than I can count. Another friend happens to live in the city where my POTS specialist is and he and his family give us a place to stay anytime we have to go out for appointments. And my husband has been working incredibly hard to help me with everything from blow drying my hair, to making me food, to grocery shopping. He’s done the lion's share of the cleaning at our house for months. He’s listened to my frustrations and seemingly tiny successes and he’s encouraged me every step of the way. I am so very very grateful for my support system through this experience.
So how did I get out of it? How did the flare end? I’m not totally sure it has ended yet but I believe it has at least begun to end. I now feel that I’m on the path to recovery from the severest and most debilitating symptoms. For me it took a lot of hard work, a lot of patience, and a lot of doctors appointments and medications to get me out of this. When things started to go downhill 6 months ago I started by talking with my local doctors to try to make some tweaks and adjustments before things got too bad. We were unsuccessful at that unfortunately. Some of the setbacks were completely out of my control, like my local POTS doctor going on a leave of absence 1 week before my appointment with him to discuss my increasing symptoms.
Through those first months I focused most of my efforts on pacing, doing things in small chunks and taking lots of breaks. My husband helped me to make large batches of food a few times which we froze for days I didn’t feel good enough to cook. Those meals have served us well. I had been working a part time job which I fazed out of as my symptoms continued to worsen. We limited our travel plans for holidays and the like, only going on trips we could pace out in ways that would make it as easy as possible on my body.
When the worst of it hit I started getting very aggressive with doctors appointments. I hadn’t seen my out of town POTS specialist in 5 years since my local doctors had been able to keep me in pretty good shape using the plan the specialist set out 5 years ago. I called and made an appointment with the specialist anyway as soon as my local doctor went on his leave of absence. I managed to get a same day appointment with a local doctor who was able to triage me to make sure my experience wasn’t something new. Once I knew that this was just a terrible POTS flare I started implementing every coping mechanism that has ever been helpful in the past.
One thing that has always helped me through the years is exercising in a pool. The water pressure negates most of the effects of gravity so I’m able to move more freely and exercise without as big of a fallout afterwards. Due to concerns around COVID and other infections I wasn’t comfortable going to a gym with a pool so I found a small physical therapy place with a therapy pool. There are only 2-3 employees and therefore never very many patients at one time, plus since it’s a medical establishment they do require everyone to wear masks. I felt much safer in that environment than I would have felt at a gym.
For the past 2.5 months I have been doing pool PT 3 times a week and have built my strength significantly. My cardio has also improved though that has taken a bit longer, I think for me in this instance the muscles had to come first so the cardio could follow. Even so when I started I could barely do 2 minutes of cardio and I’m up to about 12 now and increasing the time weekly. 12 minutes doesn’t sound like much but when you consider I’m doing 6 times as much as when I started that progress seems more significant.
My POTS specialist recommended adding back in an SSRI even in the absence of depression, which I did with the help of my psychiatrist. I was also diagnosed with a bleeding disorder that is related to POTS, though I’m unclear if one is a symptom of the other or if they just often go together. I’ll be seeing a hematologist to talk about that in a few weeks. I’ve worked with an allergist and a GI doctor to get other symptoms calmed down that were tangential to the POTS but not directly because of the POTS. Right now I’m taking well over a dozen medications and supplements at 9 different times each day. It’s a full time job just making sure I don’t run out of any meds and that I remember to take them at the right times. I’ve also been on medically necessary diets for the past 2.5 months or so, which has been particularly challenging since I haven’t been able to cook much of my own food. This has all been very hard work.
And of course there is pacing. Pacing just means doing things slowly enough that you don’t become symptomatic. It mostly involves a lot of waiting and a ton of judgment calls. Pacing is something that everyone with chronic illnesses, pain, or disabilities has to practice in order to avoid a boom and bust cycle. Remember in maybe middle school when you had to write your first essay and the teacher helped you break it up into little chunks to make it more manageable? Pacing is that but for literally everything you do every single day. It’s exhausting. I want to be doing so many things but I constantly have to hold myself back.
But I continue to see progress, albeit slowly. I still can’t do many of the things I’d like to be able to do but I can prepare basic foods and retrieve my own food and drinks now without a significant increase in symptoms. Most days I can also do 2-3 additional things, so long as they are in small enough chunks. Those extra things are mostly cooking, small cleaning tasks, or work in the garden. I’m taking baths instead of showers and my husband is still blow drying my hair for me but those baths no longer make me feel awful, nor do they sap all my energy for the rest of the day.
So am I out of this flare? Not entirely, but I think I’m on my way. I think the methods we are using for lifestyle adjustments, exercise program, pacing, and medications are helping. I will continue to try to find ways to increase my activity levels and my endurance for however long it takes until I reach a sustainable quality of life. I probably won’t ever be able to do everything I want to in a day but I do think I’ll reach a point where I can do the things that are most important to me. And that feels like recovery to me.
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