PoTS and the power of horizontal switch-off.

I have PoTS (postural tachycardia syndrome) and for me, the cause seems to be floppy veins (from a connective tissue disorder); therefore, blood pools in my legs, resulting in less blood getting back up to my brain when I'm upright, causing symptoms such as light headedness, brain fog, loss of coordination and stroke like symptoms etc. My autonomic nervous system tries to compensate for the reduced blood flowing up to my brain and fails, causing a fast heart rate, breathlessness, and generally makes me feel worse.

Here are two coping techniques which are currently really helping me:

Early moving:

When I use it:

Before symptoms develop or when they are mild to prolong my 'useful upright' period. When symptoms are mild, getting up and walking about may help, but only while symptoms are mild and there aren't lots of 'layers' of stress on the system (for example walking might help when I've been sat at my desk in silence for a while in a cool environment, but walking around will make it worse if I'm in a warm lecture hall and have been talking lots).

Techniques

Fidgeting to keep blood moving. Mostly concentrating on legs, feet, and core. Sitting on a wobble cushion or 'chair dancing' also fall into this category. As does putting knee pads on and kneeling at a desk instead of sitting, and then fidgeting while I kneel. The movement has to be controlled and involve actively tensing, relaxing and moving muscles - so flopping a limb from one position to another doesn't help me (and may worsen my symptoms).

Effect:

Being able to function better for longer while upright, and being able to do things that aggravate my symptoms for longer before my symptoms stop me - for example if I'm talking lots (a real PoTS aggravate-er for me) 'early moving' helps me to talk for much longer periods than I could if I sat still.

Interestingly, during a lecture I gave to podiatrists, I started the talk without my shoes on (so I could demonstrate my hypermobility) and fidgeted massively with my feet. Halfway through, I put my boots on. Afterwards one of the listeners commented that he could see an increase in my PoTS symptoms, which coincided with me putting my boots on and keeping my feet much more still! Since then, removing my shoes before a lecture to maximise fidget capacity has become standard prep, as has not wearing shoes while sitting at my desk.

A photographer caught some of my fidgeting while lecturing - there wasn't a single photo that had feet visible and relaxed!

Horizontal Pauses:

When I use them:

When symptoms aren't responding to fidgeting or have become too severe for fidgeting to help.

Technique:

I lie down so that my feet are higher than my heart, and my head is level with or below my heart. I do not need to sleep, but I do need to relax and allow my brain to switch off. Having my head slightly raised or using my brain makes it less effective. I think it may be that if my brain stays busy, my autonomic nervous system doesn't reset so well (but that's just a personal theory, not something I have scientific proof of). So, watching a David Attenborough nature documentary is much more 'recharging' than doing a sudoku.

It is important to note that as these are short horizontal pauses, they do not carry the same risk of de-conditioning that is associated with long periods of lying down.

Effect:

This helps me recharge after pushing my limits. A few short horizontal pauses can give me a boost to help me through the day, although it doesn't undo the exhaustion of having to cope with the level of symptoms that made it necessary. Horizontal pauses don't stop me needing recovery days after busy days, but they do allow me to cope better with the busy days and seem to speed up recovery. I also use them as part of my daily routine - a proper horizontal pause early afternoon makes a world of difference to how well I can function for the rest of the day.

It is important to note that these are things that help me. This doesn't mean they will help everyone. I have shared them in-case they help someone. Always check with your health care professional before making drastic changes to condition management.

(From a blog post originally published by Hannah Ensor in 2017 on https://stickmancommunications.blogspot.com/ - used with their permission.)

For more information and support about hypermobility, please check out our online hypermobility awareness weekend on the 28th-29th of June, with a range of free online information and support. You can see the list of events on that weekend here.