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Posted

I read about the anti-gravity treadmill https://www.alterg.com/case-study/postural-orthostatic-tachycardia-syndrome.pdf some time ago but never thought I would have the opportunity to access this. I used to love walking and running before POTS and it sounds fantastic to be able to experience upright movement again even if just for a short time. 

Well, I just found out a private hospital near me has got one of these treadmills, the Alter G, and it is priced reasonably enough for me to be able to afford a visit once or twice a month should it be suitable for me. 

I am planning to arrange a supervised 30min trial with a physio. Has anyone else tried this and what do you think?

B x

Posted

I used a water treadmill which I think is similar for about a year.  It was at PT once a week and I credit it and my physical therapist for getting me upright sometimes for about an hour.  I can do more daily activities around the house as long as I am not standing still (I am still house bound) but it helped a lot with strength and endurance.  I also did strength training and the combination was very helpful.  Now if I could only find a way to beat the fatigue. Give it a try if you can.

Posted

@p8d - Ritalin and guanfacine really helped me beat the fatigue. My specialist actually recommends modafinil but my insurance does not cover that. The Ritalin gives me enough energy and cognitive abilities to function in the mornings, until about noon. The guanfacine has helped with that also - and it controls my HTN. 

Posted
1 hour ago, Pistol said:

Ritalin and guanfacine really helped me beat the fatigue.

I don't experience fatigue as I'm pretty much chairbound due to orthostatic intolerance so don't get to do anything fatiguing, but do either or both of those meds help you be upright at all? I would be interested to see how quickly I got "normal person tired" on a treadmill with gravity removed!

B x

Posted

@bombsh3ll - when I was unstable with high NE levels I used to soar all of the time, never able to rest, even at night. Once I started SSRI, BB and other meds for my hyperPOTS symptoms I developed fatigue (may also have been caused by depression due to becoming increasingly disabled at the time). I also developed cognitive issues, memory problems and ADD. So when I started Ritalin it helped for all of those issues but in return gave me more energy to be able to exercise which in turn enabled me to sleep better. It is a matter of finding ONE thing that will interrupt the evil cycle - then we can get the upper hand (to a degree). 

Posted

@Pistol I tried Ritalin which gave me tachycardia so switched to modafinil which works ok.  I used to get even worse fatigue when it wore off but have found times and doses that help.  I am noticing that it isn’t working as well the longer I am on it so now I try to take it on bad days only.  Unfortunately I have a lot of bad days.  I also get most of the cognitive issues that you mention along with car sickness.    It’s like my brain can’t process the input from moving that fast quickly enough.  I haven’t tried guanfacine yet.  That constricts blood vessels or am I thinking of something else?  I do swear by exercise, no matter what. I also have to build in rest days after Dr appointments, PT, anything exciting.  PT is my rock.

Posted
2 hours ago, p8d said:

 I do swear by exercise, no matter what. I also have to build in rest days after Dr appointments, PT, anything exciting.  PT is my rock.

What kinds of exercise does your PT get you to do, for how long and how often? I have never had access to physio, but I bought a recumbent bike which I use for 30 minutes most evenings. I can't say that it has helped me but my legs are probably stronger than they would have been without it. 

B x

Posted

I now, 2 years later do aerobics, stationary bike and rowing machine at home 3 times a week and various upper, lower and core strength training.  I also do balance work on a Bosu board.  When I go to see her I do balance work, tweak exercises and a regular treadmill.  I am not on the treadmill very long yet but might get on as a Christmas present and work on endurance.  

Posted

@p8d - wow!!! I am impressed that you have been able to work yourself up to treadmill! I would so totally pass out! I do exercises as often as I can tolerate but my abilities change from day to day so I do whatever exercise I tolerate on any given day ( but I usually do not go without any exercise ). When I have a VERY good day I might exchange exercise for chores: mopping the floor and washing windows are my go-to "exercise". 

Posted

@Pistolwell it’s not that great.  The longest I have done on the treadmill is 6 minutes but was faster than my usual snails pace. It took me 4 days to recover to my usual fatigued state. The longest I have managed to be up and walking around, usually cooking, is around an hour but as you say, on a good day.  I take complete rest days before and after PT, dr appointments or visits from friends otherwise it takes me even longer to recover.  I do take modafinil on those days because I am so incredibly fatigued.  It’s taken years to learn to manage exercise and activities and meds and believe me, I am always tweaking things depending on how the day is.  You know, the usual.  When I started PT I was barely 100 pounds and tested very, very weak.  It was shear determination to never go back to 85 pounds and basically bed bound.  Last week I tested “ normal” in upper and lower body strength with significant improvement in core.  I had a long way to go but I never take more than a day off, allow myself to backslide as ne necessary but never, ever stop exercise.  Thanks for reminding me how far I have come!

Posted

@p8d - you can be very proud of yourself! I share many symptoms with you and also need to schedule my week around appointments or visits or certain things that need to be done - I understand the need to schedule rest days! So I totally respect how hard you have worked to be able to do what you can do now - that a girl!!!!!

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