OI better with walking vs. standing

[ahimsa]

walking vs standing, portable cane/seat from Magellan's

Oh, yes, walking is definitely much easier for me than standing still. I have trouble with standing due to NMH (Neurally Mediated Hypotension), one of the types of OI (Orthostatic Intolerance). In fact, as others have posted, even sitting upright in a chair for long periods of time can cause symptoms. I prefer to be moving around or to rest with my feet up (either in a recliner or with my legs crossed). And standing still is the absolute worst for me. As the first poster wrote, standing just after exercise (a short walk) seems to be worse. My ability to stand still is much less after eating (blood pooling in the stomach).

In fact, I think inability to stand still is a very common sign of NMH. Patients will come up with all kinds of behaviors, many of them subconscious, to keep the blood moving. This is why the patient must stand absolutely still on the tilt table test. Moving around can keep the blood pressure from dropping enough to get a positive diagnosis on the test. I was fidgeting without even realizing it and the folks running the test noticed it and told me to stop. Within about 30 seconds of my stopping the movement my BP plummeted and I fainted.

Here's an extract from the PDF file that glenp posted (see page 4):

NMH and POTS cannot be detected with routine, resting blood pressure or heart rate screening. The diagnoses can be made with a prolonged standing test or a tilt table test. Although a 10-minute test is all that is needed to diagnose POTS, this is too brief for diagnosing NMH, which usually requires at least a 45-minute period of upright posture. ... Many people with NMH develop adaptations to keep from fainting, such as crossing their legs, fidgeting, or sitting or lying down when they get lightheaded or tired. However, during the tilt table test they must remain still, and they cannot call upon these natural defenses. As a result, fainting can occur for the first time during the tilt table test. Increased fatigue and malaise often occur for a few days after the test is performed, although our experience has suggested that these symptoms can be minimized if the individual is treated with intravenous saline solutions immediately after completion of the tilt test.

Sushi asked about a portable cane/seat. The one I have is from Magellan's travel store. You can use "cane seat" or "sport seat" with google to find a bunch of different brands but here's a link to the one that I have:

http://www.magellans.com/store/Health___Hygiene___Walking_AidsWA222

I have had it for about 15 years now and it's still fine, just a bit scratched up. And it has gone with me on quite a few plane trips (it fits in the overhead compartment on top of the luggage). The original rubber tips on the feet got worn through long ago but I got new rubber cane tips at my local pharmacy to replace them.

Anyway, this one works for me -- lightweight and rated to hold up to 250 pounds. However, I think if someone were very tall they might want to get one that is a custom size so that they would not have to sit down too low. I think I read somewhere that you could order a more expensive version of this from a store that does custom. I'm 5'7" and this one works okay for me. It's not that great as a cane but I really don't need a cane (except on those days when my balance is really bad and I rarely go outside when I'm feeling that bad). I need it just to sit down for any time that I might have to wait in line (e.g., at the grocery store check out).

Of course, whenever I find a real chair or a bench, one with a back rest, then I will sit down on that to rest while I'm out doing errands. But this folding cane/seat is a good option for waiting in line.

Hope this helps! :Retro smile:

 

[taniaaust1]

Tania, you should get a folding chair cane or something. I have two folding seats I use. I used one yesterday doing errands. I sit and rest and sit and pay for things I buy. Perfect. Lots of people comment about what a great idea it is. I think they wish they could sit too, even when they are ok.

Yeah Im wanting to get something like that. Thing is I dont want one which is a cane as I dont need a cane (If im too sick to be walking steady, my CFS/ME is too severe to be out at all, as I get a lot of other major issues then and being unsteady is the least of my worries).

Im after something which goes to a chair but something which folds up which I could carry easily in a bag unless needed (so folds up more then the cane chairs Ive seen). Does anyone have any ideas on anything like that?

 

[Tia]

Night and day, baby..Night and day. When standing still after about 10 minutes I feel faint, when wlking, no problem. It has to do with the circulation not being ok.

 

[L'engle]

This is pretty extreme for me. I've been doing better with walking lately, which is wonderful, but standing can still make me very ill very quickly. I had to stand in a fairly airless room the other day and within a couple of minutes I was very weak, spacey and looking around for a chair. Thought I would be Ok as other things are getting easier, but the combo of airless and standing is still one of the worst. There was also a lot of stimulus in the room.

I guess people whose exercise intolerance overshadows their OI symptoms would be the opposite, with the movement required for walking causing a much worse effect.

I have to think of myself like a bicycle, if I stop moving, I start to fall over

 

[toddm1960]

Not at all in my case, walking is no different than standing. I over constrict so it doesn't matter if I'm moving or still my BP and HR are rising every minute. Two very different groups in POTS the orthostatic hypotentsive and hypertentsive. It seems 95% of the research is geared to the hypotentsive group, the one doctor I had been seeing that had heard of POTS said there was no way I had it because my BP didn't drop and I didn't pass out.

It's sad how few doctors understand POTS has nothing to do with BP, rising or falling. POTS is connected to HR (tachycardia), NCS is connected to hypotentsion. You can have both POTS and NCS, but until doctors understand it better POTS will incorrectly be connected to hypotentsion and passing out.

 

[fla]

I posted a clip on youtube of what happens to my heart rate within the first minute of standing: POTS Demo.

I would faint within a few minutes but to be safe I'm not pushing that far until a disturbing sound in my heart that my family doctor heard last time is investigated by a cardiologist.

 

[Sallysblooms]

Tod, it drive me nuts how docs forget that POTS isn't low bp, it is the heart rate that sets it apart! I have had very high bp with it, finally it is better. I have to take med for bp, for now. There are a lot of very good videos. I watch them all the time, very helpful when I got POTS two years ago.

 

[penny]

Before I knew about OI/CFS, I used to hate going to museums or other places where you're standing in place for long periods. Didn't know why, just knew I felt like crap. As if I had a museum allergy, lol

Exactly! I called it "museum tired" but never knew why I hated them so much, since I liked them for a couple of minutes. Learning about OI was a revelation to me, as well as my art professor father. He never could understand how my 'interest' could fade so quickly and completely, and how those long trips to the art institute or the field museum always ended with a miserable daughter! Of course he can even tire my healthy and fairly energetic husband out, so maybe it wasn't all the OI