Sarah Tee Posted February 1, 2021 Report Share Posted February 1, 2021 I can't seem to find the information I read on countermeasues a while ago. Can anyone point me to a good reference, preferably with some instructions? I'm talking about muscle tensing, leg crossing, etc. And I would be glad to hear what countermeasures you use. If anyone raises their bed, I wonder by how much, and can you still sleep on your side? Thanks, Sarah Quote Link to comment Share on other sites More sharing options...
Pistol Posted February 1, 2021 Report Share Posted February 1, 2021 Hello @Sarah Tee - here is an article on this: Physical countermeasures to increase orthostatic tolerance - Wieling - 2015 - Journal of Internal Medicine - Wiley Online Library I suffer from NCS as well as HPOTS and am severely intolerant to being upright. I used to pass out several times a day and have found the following measures helpful: - I always cross my legs, even lying down. It is an automatic reflex for me. - when I start to feel lightheaded and cannot sit I squat. This helps to prevent fainting - but as soon as I stand up I may faint. I squat until someone gets a wheel chair. - When I am recovering from being bedridden during a flare I do the following exercise to regain tolerance: stand with your back leaning against a wall, feet firm on the ground and spread apart to line up with hip bones. Slowly slide your back down the wall until you squat, hold this pose a few seconds and slide back up. Stand for a few seconds and repeat. The standing interval needs to get longer each time before you slide down. I do this for a few minutes or as tolerated, until I can stand alone. - stand at a counter holding on, stand on tippy-toes and switch to standing on heels. Do this several times - it gets the circulation going and helps with pooling. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted February 1, 2021 Report Share Posted February 1, 2021 The head of my bed is elevated a few inches (plastic risers) and I do sleep my my side. I always have my legs crossed or supported so my knees are high to my belly or something. It’s automatic for me, too. I do try to squeeze my muscles when I’m about to pass out, but it doesn’t always work and/or I can’t always do it. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted February 1, 2021 Author Report Share Posted February 1, 2021 Thank you @Pistol and @RecipeForDisaster, that's great. After finding that salt/fluid loading worked once and then hasn't really worked again to the same extent, I am waiting to see a specialist. In the meantime I am going to try some of these strategies and see what happens. I guess I am lucky in that my symptoms often clear up in the evening around 10–11pm. Not every night but a few nights a week, so I can exercise then. Unfortunately, apart from keeping up my fitness levels a bit, it doesn't make any difference when symptoms come back the next day. So I figured I'd try some countermeasure exercises/manouvres in the morning and also look at raising my bed. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted February 1, 2021 Report Share Posted February 1, 2021 I’m not sure if it helped me, but it doesn’t hurt. I am unusual and we don’t know what I have, but I’m generally getting worse. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted February 2, 2021 Author Report Share Posted February 2, 2021 I'm sorry to hear that, @RecipeForDisaster. I sometimes feel a bit bad about posting here because my symptoms aren't as serious as most other people. For instance, I don't faint or have to stay in bed. The problem is that I have two other medical issues (unconnected). I used to manage okay when the dysautonomia only affected me for an hour or so in the morning, but now that it runs all day I am pretty much housebound. The other two medical conditions won't budge, so I am hoping that I can do something to reduce the dysautonomia. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted February 2, 2021 Report Share Posted February 2, 2021 Never feel as bad for being higher functioning! I don’t stay in bed, either. I do have other conditions which complicate things. We are all different and I don’t think anyone is proud to be sicker than another. This is a kind forum. I totally get what you’re saying about the other conditions - now that I am potentially adding another one, I can barely manage. Sequential compression devices have really helped me. They just squeeze the blood up your legs. They are easy to put on - often I can’t manage my compression stockings. I got mine used on eBay. Quote Link to comment Share on other sites More sharing options...
dancer65 Posted February 2, 2021 Report Share Posted February 2, 2021 I agree don’t feel guilty posting just because you aren’t as bad as some other members . Over the last few years I have improved enormously and would class myself as highly functional although my VVS and POTS affects me in some way every day . I have found squatting whilst clasping my hand in front of my chest and squeezing my chest muscles to help when I feel I’m going to faint , if that doesn’t work I get down on the floor ASAP ! I concentrate on strength training of back , abdominals and legs muscles as they are important for skeletal pumping of the blood . I notice a difference if I am I’ll and don’t do them for a few days . Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted February 3, 2021 Author Report Share Posted February 3, 2021 Thanks, @dancer65. I have added strength training for abdominals to my training routine. At the moment I can exercise 3–4 evenings per week so I will try to make the most of it. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted February 3, 2021 Author Report Share Posted February 3, 2021 @RecipeForDisaster, thank you for your kind words. I am sorry to hear you might have another condition adding to your situation. I will have a look at compression stockings. I had not tried them so far because I don't have any obvious signs of pooling in my legs (not that that rules it out), but I will ask my doctor (GP/PCP). I am feeling so confused at the moment because my fatigue/presyncope symptoms don't seem to correspond to orthostatic intolerance – they come on 30 mins to an hour after I get up, and disappear later in the day (currently about 10pm, but previously much earlier). Anyway, while I wait to see the dysautonomia/POTS specialist, I want to work through everything I can in terms of countermeasures. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted February 3, 2021 Report Share Posted February 3, 2021 All I can say is some of us are weird LOL. I fit into that... I don’t match any dysautonomia except maybe HYCH and that does not explain all of it. I think maybe the trigeminal neuralgia is another clue that my nervous system is broken? I have other stuff going on, too. I'd try the stockings... my legs are grayish purple so I don’t know if they look like pooling, but they help. I’d just rather use the SCDs because they’re so much easier to get on. Drinking broth may also help you. Quote Link to comment Share on other sites More sharing options...
yogini Posted February 5, 2021 Report Share Posted February 5, 2021 On 2/3/2021 at 8:45 AM, Sarah Tee said: @RecipeForDisaster, thank you for your kind words. I am sorry to hear you might have another condition adding to your situation. I will have a look at compression stockings. I had not tried them so far because I don't have any obvious signs of pooling in my legs (not that that rules it out), but I will ask my doctor (GP/PCP). I am feeling so confused at the moment because my fatigue/presyncope symptoms don't seem to correspond to orthostatic intolerance – they come on 30 mins to an hour after I get up, and disappear later in the day (currently about 10pm, but previously much earlier). Anyway, while I wait to see the dysautonomia/POTS specialist, I want to work through everything I can in terms of countermeasures. It’s quite common to feel better later in the day. No one has quite figured out why, but that’s totally common. I am not sure countermeasures would help with that. But if you have particular symptoms (like low blood pressure) earlier in the day people might have ideas to help. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted February 7, 2021 Author Report Share Posted February 7, 2021 Thanks, @yogini. I thought I had it all worked out that it was low blood volume ... but now I don't know! I figured I might as well try a few countermeasures just in case. I have an appointment with the dysautonomia specialist in August so that gives me six months to experiment. Quote Link to comment Share on other sites More sharing options...
David Smith Posted February 24, 2021 Report Share Posted February 24, 2021 On 2/1/2021 at 10:46 PM, RecipeForDisaster said: The head of my bed is elevated a few inches (plastic risers) and I do sleep my my side. I always have my legs crossed or supported so my knees are high to my belly or something. It’s automatic for me, too. I do try to squeeze my muscles when I’m about to pass out, but it doesn’t always work and/or I can’t always do it. Hi everyone. I've just being diagnosed with POTS after a NASA Lean Test. From the little I've learned about POTS so far it seem like that I am having trouble getting blood to the top half of me when I'm upright. I have read raising the bed head a bit may be helpful. Could someone please explain how this works, as I would have thought you'd want to raise your feet in bed to get blood flow to the brain. Thanks! Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted February 25, 2021 Author Report Share Posted February 25, 2021 12 hours ago, David Smith said: Hi everyone. I've just being diagnosed with POTS after a NASA Lean Test. From the little I've learned about POTS so far it seem like that I am having trouble getting blood to the top half of me when I'm upright. I have read raising the bed head a bit may be helpful. Could someone please explain how this works, as I would have thought you'd want to raise your feet in bed to get blood flow to the brain. Thanks! G'day David Smith, The idea of raising the bed head is to reduce urine output at night, and hence keep fluid levels up. Some people find it doesn't agree with them for the reason you mention. Quote Link to comment Share on other sites More sharing options...
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