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 Lupus under a rheumatoligist’s care for about 5 years. While my rheumy initially identified me as SLE, as many of my symptoms were found to have a neurological genesis (and were ultimately linked to my brain tumor), she 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. I also suffer with severe nerve pain (which, after extensive testing for peripheral nerve damage came back negative, was thought to be central nerve damage due to the brain tumor). Pain ranges the gamut from extreme sensations of burning, pins/needles, tingling and numbness.

While on a consult call with my neurosurgeon’s office, I mentioned the recent discovery with my heart rate, 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 am only just beginning to dig out of the financial hole that being off of work for the past year so this has me quite stressed. At the same time I don’t know how much longer I can cope if my condition can’t be improved—each day is such a struggle to carry on as normal while all I can think of is how much longer until I can crawl to bed!

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 💜

[KayHimm]

You are struggling with so much, and I am sure you are a challenge for your doctors because of your diagnoses. The autonomic system and autoimmune disease has not been well-understood but there is a lot of research in the area. I have damaged nerves from autoimmune disease, which causes orthostatic hypotension. There is a lot they can do to help you if they discover you have autonomic issues. Please feel free to message me if I can help in any way.

[Melba1]

Hello, so sorry to hear you’ve had a brain tumour and lupus too with these new symptoms. Must be very hard to cope with and worrying with your job.

If it’s any comfort my PoTs is relapsing/ remitting with my other neuro symptoms (the pins and needles, weird body sensations brain fog, hallucinations etc) and it feels awful when it’s bad but I’ve learnt some techniques to reduce the rapid heart rate (a bit, not fully) and lots of people do get much better from it.

Can understand how hard it is in your job being on your feet- if you think of how high your heart rate is going on standing, it must be like our bodies (well cardiovascular system if not our legs!) are running a marathon all the time. You must be exhausted. I find the only thing that really helps when it’s bad is lying down straight away but appreciate that’s very hard for you on your job 🙁 Lots and lots of water helps, strengthening your calf muscles, eating salt (if your bp isn’t high but check with dr) and some people on here have medications that help.

Are you on medication for your lupus? I found a massive improvement in all my neuro problems (almost completely better) on rituximab and methotrexate so there could well be something that you can try that will help.

This is hopefully just a bad phase and as a lovely doctor said to me in my worst phase - this will NOT be your life. It’s just a case of finding what works for you. Do really feel for you - PoTs isn’t taken as seriously as many of the other neuro parts of lupus by the drs but I found it one of the hardest to live with. The fatigue and always having to lie down is so demoralising isn’t it?

Good luck - hope it resolves itself (which it can do) or you get quick help xx

[Freckle1000]

Sometimes POTs can be due to deconditioning after a long illness. There are structured excercises that medical physiologists can create for you that can help resolve (and with some people come close to curing the condition) Going to a gym to lessen the effects was the most anti intuitive thing I've ever had to do - but now I no longer flake out on standing and while I still have some cardiac autonomic problems - I can function pretty well. Its not perfect - but Im not disabled by it any more. Its more of just an annoyance at times.

[Bunny2020]

I have POTS for 5 months now...I am totally disabled...cannot work...could not even make it to the bathroom for a long time...showers are torture chambers....my life is totally ruined...I am praying for a miracle..this is the worst thing I have even been through and I have had many serious illnesses and surgeries....but this POTS is the worst...I feel like I am dying every day......

[EDSerinDevon]

there is no one cause that creates POTS or ANS issues it is very complex - at a guess your neuropathic pain could be SFN that needs to be ruled out and Lupus suggests autoimmunity issues, POTS is diagnosed via tilt table test by cardio or neuro.

The following site has been where I have found all my info from both before and after my own POTS diagnosis: vimeo.com/dysautonomia