Investigating POTS

[nwfrugalista]

Greetings to all!

I recently became aware of this condition and it was suggested to me by a specialist (my Neurosurgeon) that I be evaluated for POTS. A little backstory—in July 2017 I underwent a craniotomy/pinealectomy to remove a benign brain tumor, and due to multiple complications was on medical leave from work for one year. Additionally, I am managing with an auto-immune condition (have been under a rheumatoligist’s care for about 5 years due to SLE/Lupus, although since most of my conditions were later found to have neurological genesis, my rheumatologist was considering revising my diagnosis—until my last visit when my blood work/ANA levels were yet again raised and a flare suspected

Fortunately, I was able to return to work this summer, however since then I‘ve suffered daily from fatigue (and at times exhaustion). It feels like that just being on my feet at work (I am a barista/server/bartender in a fairly busy coffee shop/tavern) is more like mountain climbing and running a marathon at the same time! At first I put this down to just the adjustment of being back to work and needing to rebuild stamina. Three months later I am still struggling daily with little to no improvement. Recently whilst at work I could feel my heart racing and because I wear a Garmin vívofit watch which tracks my heart rate, I was able to see that my heart rate had spiked up to the 140s (my typical resting rate is in the mid-60s)! I hadn’t really paid attention to the heart rate feature before, so it was alarming to look back through my daily stats and realize that these high heart rates are occurring every day whilst I am at work and active on my feet.

While on a consult call with my neurosurgeon’s office, I mentioned this concern, and that is when I was told that I need to be evaluated for POTS. Quick Internet research of POTS has me worried that I may be ordered off of work yet again since my job requires being on my feet/moving constantly 8 hours per day. In the US, I doubt it would be considered reasonable (or even feasible) for my employer to accommodate this condition in my current position. Having just returned from an extended leave, I’ve exhausted my FMLA leave for the time being, and I have very little personal leave accrued.

I know that it seems I am jumping to worst case scenarios, but having just come through brain surgery and an ongoing lengthy recovery, it is crushing to think that just as I thought I might be finding my way back to ‘normal’ (or the closest version I can achieve towards it) I could be facing another chronic condition.

I would be very interested to hear from any of you with this diagnosis to hear how you are managing, if there are any treatments which are effective for you, and if you’re able to work (and if so, in what type of position). Sending best wishes for healing to all 💜

[Hidden]

PoTS can be a very debilitating condition in its own right, without following closely on the other conditions you have had to deal with during the years. Certainly the excessive fatigue and racing heart rate can be symptoms of PoTS. However, PoTS does not necessarily mean you will be unable to work. Many people manage this condition and continue with their careers through pacing themselves. Ideally, rather than guessing, you should get a diagnosis. If STARS can help then please do not hesitate to email [e-mail]. We have a comprehensive PoTS booklet on our website which you can download. stars.org.uk

You might find our STARS forum a little more appropriate too as many people with PoTS are also members.

Best wishes

Rachel - Arrhythmia Alliance patient services