How often do you force yourself to get up through the day?

[bombsh3ll]

I'm just trying to get an idea of what other people have found helpful or been advised to do regarding getting up and walking around the house every so often when largely chairbound. Obviously there is a balance between boosting circulation and minimizing deconditioning, vs making yourself feel worse for the next little while and risking a faint.

I read a book by Joan Vernikos who did a lot of research on astronauts who come back with a POTS like phenotype, and ground based experiments showed volunteers confined to flat bed rest had to stand up at least 16 times per day to avoid developing orthostatic intolerance. Dr Vernikos estimated this should be doubled (ie 32 times) if you are sitting in a chair and going from sitting to standing. Of course this research was based on healthy individuals but may have some relevance to us. 

Does anyone else set an alarm or reminder to prod you to move around at intervals? I try (but usually fail) to do this every half hour or so.

Also, I tend to force myself to remain sitting upright throughout the day (which makes me feel really lightheaded and miserable with a bad headache) vs reclining, in order to try and maintain function. 

I wonder if I would be better off having reclining breaks to allow some blood flow to my brain. This may also make it easier to get up periodically if not already feeling miserable.

I ride my recumbent bike for 30 minutes most evenings, but during the day I am generally just in the chair with little exercise, although I do lift arm weights for 10min daily. 

I would really love to know other people's ideas/approaches to this.

B x

[Clb75]

I’m housebound mainly due to dizziness. I have about 20-30 mins upright before I get dizzy and have to sit back down, and always have to sit in a reclined position. I’ve been using a recumbent bike but haven’t been able to push past the 20-30 min mark. 

This summer I was able to go to the pool with assistance. I swam around a little and was able to be upright for over an hour as long as I was completely submerged. I could recline on the reclining chairs after to rest. I’ve been able to start walking slowly down the street, only 2blocks And walking really slow. I’m still not past the 20-30 min mark before I get dizzy, but I feel I’ve been able to do more in that time than I did before. Fatigue is an issue, sometimes after walking I have to lie down for 30 mins to recuperate but some days I don’t. I think it’s a very slow process but the more you move the more you’re able to do. 

Is there anyway you can mix up your current routine? Start walking around the house or down the driveway etc to try to get some upright exercise in? My doc also told me to do planks to work on my core muscles...they are hard but a stronger core may help with abdominal blood pooling. 

[StayAtHomeMom]

I am not sure what I did to help me be upright more. it was over 2 years ago. Honestly I think my biggest motivator was I wanted a cigarette but refused to smoke in the house.

I just wanted to post a quick message of encouragement. Do little by little, try to push but not too hard, and before you know it the lightheadedness and headaches should happen less frequently. Good luck and I hope you get some good suggestions. 

[dancer65]

When I was really bad I was always visiting the bathroom which meant I was up about every half hour , often I would crawl on my hands and knees if I was on my own incase I fainted  . After reading about TTT training to inrease OI I started to use the bathroom visits as OI training and increase both moving and standing times each day but always with something near to grab onto if i needd it . Over time I then would add in one small chore, it may have taken me a whole day to achieve it but it made me feel useful again. It was slow progress and some days extremely challenging  I started to believed I would never be able to work full time again especially as I am in my fifties , but 4 years on i am teaching all my classes and my latest progress is not having an  assistant  to demonstrate for me and  i am coping ok ! 

It was and is still  hard and I had to try and learn what was too much and even now every day is a challenge one way or another

I also never stopped exercising even at my worst even it was only mobility core strengthening or stretching all done by floor work, even some static exercise on the sofa ! 

I hope you can find a routine that helps you improve x

 

[Pistol]

I have found that some days I may make it down my driveway (200 feet) and other days I feel like I can go double that, However - when I go further than often I cannot make it back without having to sit down on my heels half way back. So - I try to go what I can every day and then do extra upright exercises around the house so that when I give out I can retreat easily. If I go further than my tolerance allows than I have to pay for it with inactivity for a few days. And in response to that I will have to start all over again …. down the drive way it is ! But mostly I have found that you have to learn to be able to listen to your body - we fluctuate in our abilities and if we know what our bodies tell us then we will be able to judge what we can do that day. This works for me (mostly). 

[bombsh3ll]

Thanks for the replies, it is really good to get an idea of other people's approaches to this. Today I have my timer set for 20 mins then get up and do something very brief, & allowing myself to recline if needed in between, in order to have a balance between movement and quality of life. I have to get out of the mentality that if I faint it represents a deterioration in my condition, if it happens doing something I would not normally do. Yes if I remain on the couch all day with my legs up I can avoid faints & severe near-faints, but that doesn't mean I'm any better, it just means I am more limited. It is hard to talk yourself into that though!

I have an appointment tomorrow in London at UCLH, the only NHS autonomic unit in the UK. I've waited more than 4 years to see someone who knows what POTS is and might be willing to treat it. I hardly dare get my hopes up of finally getting some specialist medical help, however I've already exhausted most treatments myself being a GP and able to obtain them (bar a couple that are unsuitable or contraindicated in my presentation), so I am pretty much down to stimulants and IV fluids left. 

B x

[Pistol]

@bombsh3ll - I am glad you are finally getting to see someone experienced in dysautonomia. After dealing with cardiologists that more or less dismissed the existence of POTS as a valid diagnosis for 2 years before finally seeing an experienced specialist I completely relate to the relief you will find once you talk to someone who has seen many others in your situation. I used to think I was a rarity because there was just no one else to relate to. But once I met my current specialist I realized that - although we each have our own symptoms - there are many others out there and what I experience is what many others go through as well. That in itself - as well as being heard by a doc who has heard it all before - gave me great comfort. I hope the same will be the case for you as well. Best of luck! 

[dancer65]

Good luck tomorrow I hope it goes well,  do let us know how you get on .

I see cardiologist in London who runs a  syncope unit, the syncope  nurses are really supportive and always return my calls on the same day if I am in need of advice .

[Guest KiminOrlando]

I push myself to the brink every day. When I know that I am starting to feel like I am going to faint, I lie flat. I picture it as giving my body time to pump the trapped blood out of my feet. I may stay like that 20 or 30 minutes, then I sit on the couch, but keep my feet elevated until I see my heart rate, O2 and respirations return to my normal for about 20 minutes. Then I do it again. This is how I get laundry done, small house cleaning things, etc. It may take me 3 hours to clean a toilet, but I can get it done. Now, I don't cook because things burn and catch on fire while you are semiconscious on the couch, so this doesn't work for everything. This is why I like to use my slow cooker. It is my speed and I am unlikely to wake up in a burning building.

Sounds silly, I know. You have to have this life to understand why it takes three hours to clean a toilet. 

[bombsh3ll]

2 hours ago, KiminOrlando said:

You have to have this life to understand why it takes three hours to clean a toilet. 

That's so funny but not funny, I totally get it! I am the same scooting around on my bottom to clean the floors! Good to know others have a more relaxed approach to reclining when needed during the day, alternating with activity. I think I need to move more often, but not be so hard on myself about trying to sit upright all day. 

 

On 9/27/2018 at 7:51 PM, dancer65 said:

Good luck tomorrow I hope it goes well,  do let us know how you get on .

It was a killer journey to and from London yesterday but worth it to see the autonomic neurologist. I didn't catch her name but it was the female Irish consultant with blonde hair at UCLH autonomic unit. I traveled alone and my main fear was passing out on the journey and being carted off the train to some random A&E and missing my appointment, but I made it! 

No new treatment currently but she is organizing some further autonomic testing for me in the next few months - including autoantibodies!! That is something I was going to pay for through Celltrend so it is fantastic to be getting them on the NHS. She thinks it is unlikely I will test positive because I didn't have a viral illness about the time of developing POTS but will order them based on the fact my onset was so sudden. I refrained from pointing out that most autoimmune conditions develop spontaneously without a viral cause, but was delighted it is not just automatically being put down to EDS (which is present since birth but I developed severe POTS in a day after 34 healthy years - surely it would emerge gradually if it were due to veins just getting stretchier). She told me that if antibodies were positive, I might even get TREATMENT - plasmapheresis is what they offer - whoop whoop!

Next step is the battle with my health board to approve funding for the inpatient tests!

B x

[dancer65]

Glad it was a positive experience and you managed the journey ok . Interesting they treat if antibodies are positive . I have a few autoimmune diseases definatly genetic . Didn't know NHS were using plasmapheresus for Pots ! 

Good luck with your health board I hope you get what you need 

[Clb75]

Which antibodies are they testing for? The same ones from celltrend?

[bombsh3ll]

On 9/30/2018 at 2:48 AM, Clb75 said:

Which antibodies are they testing for? The same ones from celltrend?

Yes it seemed to be the same general list, those affecting the autonomic nervous system. That's something I am really keen to rule in or out as it is potentially treatable. 

B x

[Clb75]

Would you mind posting a list once you have the test done? I thought celltrend was the only one doing these tests. It would be good to know if there are other resources for getting these tests done. Here in the states mayo does some testing but not the ones that celltrend does. 

Good luck, I hope they find something that helps improve things for you.

[bombsh3ll]

16 hours ago, Clb75 said:

Would you mind posting a list once you have the test done?

Yes of course I will. It will probably be around 8-10 months before I go back for the tests, that's if my health board will fund it. 

B x