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Update On Tilt Training


mkoven
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I've posted a couple times about tilt training-- basically desensitizing the bodybody to upright posture in tiny incremental increases. Wanted to give an update.

Despite some skepticism- my own, and from others on the board, I got the okay from my doc to try. I started one-two minutes-- in other words, the length of time I could stand, stopping before feeling bad. I've slowly added 30 seconds at a time, and am now up to 9.5 minutes that I can remain standing. It might not sound like much, but I think it's really helping.

My rule of thumb is never to push it-- if I start to get sweaty, nauseated or otherwise feel bad, then I stop immediately. I try to do it at least every other day, at the end of the day, so I don't mess myself up for any remaining plans.

In general, I have to say I'm overall feeling somewhat better. Certainly not cured, but do better upright for longer periods. Btw, I do wear my compression stockings while doing this. And if I need to squirm one of my loosey-goosey eds joints back into place, I allow myself that.

At first I never thought I'd see 10 minutes, but I'm getting there.

I also walked today for 14 minutes! I bring my walker with the fold down seat, so I can take a break if needed, and often need to slow down...

In general with me, SLOW increases are always best...

I know that this might not work for everyone. I guess it depends on the mechanism for everyone's pots/ncs. For me, we're pretty sure it's eds. I think in part I had gradually lost my ability to remain upright, because I've had so much joint pain, I rarely stand or stand still. I guess I'm trying to recondition my blood vessels to constrict. I don't have any illusions about becoming "normal"-- I will always have eds because my body makes bad collagen, but want to be able to function as close to "normally" as possible.

Just thought I'd share a minor success story. I just want to be well enough to go shopping, work, etc...my ambitions are not lofty.

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That's great news! It's about time you had good health stuff happen for you :) I know you've had a heck of a time. -Nina

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Guest tearose

Glad to hear you found something that is helping!

I only tried an inversion table for a few weeks and got head aches and stopped. I probably did too much time on the table. Maybe I will try it again in fewer minutes inverted!

take care, tearose

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I'm glad that you have found something that works for you!! :)

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Still not totally normal, but I'm up to standing 10 minutes, and am generally feeling much better. I wonder if my ncs, which was mild till this summer, was made much worse by allergies and then prednsione withdrawal. I'm hoping if I can keep up the allergy control,and if more time elapses from my prednisone weaning it will quiet down some more. I still get easily tachycardic, but not super high-- rarely over 120. My resting heart rate is still not what it used to be--low 60s. I'm usually in the 80s when resting now.

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  • 3 weeks later...

I'm now up to 15 minutes! I still have problems, but I'm able to stand and walk for much longer now. I still weart my stockings, get weird rushes, breathless, etc... but it helps my general confidence. The presyncopal spells are much more minor and infrequent. Basically, I feel slightly worse after a minute or two of standing anf my heart rate increases some, but then it seems to stabilize at around 96 or so. It's my joints that really start to hurt. I still allow myself some squirming to make sure hips are properly in socket...

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That's very encouraging. You have neurocardiogenic syncope? The research that I've seen on tilt training recruited young people with neurocardiogenic syncope, so it makes sense that it would help you.

What do you mean about your hip sockets? Do you have Ehlers-Danlos syndrome?

Are you using a mast cell stabilizer for the allergies?

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Yes, I have eds, ncs, and I take huge amounts of antihistamines (zyrtec, allegra, benadryl) and singulair. I've only been doing the tilt training every other day or so to not stress out my joints too much, which seems to be enough to maintain.

Right now my si joints and pubis symphysis are driving me nuts--like getting stabbed in the rear and crotch repeatedly :)

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  • 2 weeks later...

I've had to back off tilt training since hurting my hip. I subluxed it badly a couple times (eds) in the days after climbing some steep hills. i'm mostly okay walking (FLAT terrain), as that engages muscles, while standing requires more ligament strength and it starts to really hurt. I still am feeling better and think it helped, and have better tolerance for being upright. I hope I can maintain the benefits by just being upright more, even if it means upright and moving.

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