Taking Tilt Training Seriously, I Wasn't!! Who Wants To Tilt With Me?

[Alaska]

Went to the cardiologist last week for the first time. I have been diagnosed neurally mediated hypotension now for about 2 years. I have been given the protocol to help with my condition, such as tilting the head of my bead, exercise, more salt, good sleep, eating smaller portions, compression socks, medications, and AT HOME TILT TRAINING.

SO, I have been doing all of those.... well that's what I was telling myself. When I went to the cardiologist this week he said, "so, how is the home tilt training going". I said, "well I've done some." I pride myself and say "I'm going to do everything possible to get better", yet I was there in the office telling the opposite to the Doctor. He pulled up an article study that showed after tilt training for 6 months daily that "50% of HOT subjects and 20% of control subjects were syncope-free at 6 months". Why haven't I been doing this then? Well, the study did recognize that having people do daily standing against the wall for up to 45 minutes was difficult and many people were not compliant. This lack of compliance made other studies on tilt training unreliable.

It was a wake up call for me. I want so bad to get better, but I'm not doing what is requested for me. I'm willing to accept I'm not doing everything.

SO, 3 days ago I started the tilt training at home. I just put on a show or a movie and just start standing at the wall with arms down. I am starting at 30 minutes and plan to build on that. BUT, I'm going for daily... no excuses. And I'm going to try for 6 months. It's hard because it takes up time AND who knows if it will really work. But research says it does!

WHO WANTS TO JOIN ME? This is going to be difficult I think, and I would like support of others and I would like to support you guys also. I wonder if we can keep this link going for 6 months and post struggles and successes? This will be like a weight watchers thing.. but maybe we could give it a creative name like "tilt watchers".

Here is the article and research:

http://europace.oxfordjournals.org/content/12/2/240.full?sid=149c29a4-807f-45d5-bf60-e0b9c67555b5

[roxie]

I'm doing it!! My dr is directing me and is having me go slower than some, my first goal is to build up on my exercising, but I am doing to none the less. He'll tell me when to really start pushing that as my #1 focus.

Good luck

[LMG]

Sounds interesting. Is there anything specific or do you just stand with your heels to a wall and arms at your side for as long as possible?

[cma]

Hi Alaska.

That's very interesting. My doctor told me to do this kind of training as well, but I didn't take it seriously enough. I did it for maybe a week or so, but he told me to start slow and increase the time by one minute every other day. I didn't see any improvement in my symptoms and so I don't do it anymore. I've raised the head of my bead about 9 months ago and so far saw no improvement in my POTS symptoms.

Do you also have typical 30bpm increase in your heart rate when you stand up, or do you just have hypotension?

[Alaska]

Hi Alaska.

That's very interesting. My doctor told me to do this kind of training as well, but I didn't take it seriously enough. I did it for maybe a week or so, but he told me to start slow and increase the time by one minute every other day. I didn't see any improvement in my symptoms and so I don't do it anymore. I've raised the head of my bead about 9 months ago and so far saw no improvement in my POTS symptoms.

Do you also have typical 30bpm increase in your heart rate when you stand up, or do you just have hypotension?

When standing still my bpm increased as my blood pressure decreases. I will stand against the wall or just stand still. I think standing against the wall is more for safety if you actually faint, as they often will say to also put a pillow under and by you.

[Alaska]

Sounds interesting. Is there anything specific or do you just stand with your heels to a wall and arms at your side for as long as possible?

I think the main idea is stand as still as possible, with arms down if possible.

[Alaska]

I'm doing it!! My dr is directing me and is having me go slower than some, my first goal is to build up on my exercising, but I am doing to none the less. He'll tell me when to really start pushing that as my #1 focus.

Good luck

So anti-bananas, are you in with me then?

[roxie]

I'm in!

[Kellysavedbygrace]

I wish I could. At this time I am unable to stand still for more than a few seconds w/o becoming symptomatic and that is on a good day. On my first TTT I made it 3 mins, the second 9 mins, before blacking out. before losing vision I can almost feel the. nE surge and my legs become weak, I lose ability to concentrate, etc- you know... I guess I could take it really slow and start w one min. Hmmm haven't considered ... I thought most everyone here was like me but I must be either wrong or misunderstanding tilt training.

[Millerla]

I'm having issues with my "prescription" of exercise. I have a pretty strong heart, so even when my hr gets up to 200 bpm, I don't pass out. I feel pretty cruddy, but my body seems to be able to handle it.

I totally understand how difficult it can be to get started on this stuff, but supposedly it really does help. Good luck to everybody!

[Alaska]

completed my 30 minutes tonight and also decided to just throw in 15 minutes sitting still, as sitting also causes problems for me. I think if you can just get one minute to start, then thats good enough. I think the main idea is to retrain the body. I never pass out either but have all the pre-fainting symptoms. So, my hope is to get rid of those. On the tilt table I passed out in 10 minutes.

[Alaska]

Here is another article about tilt training from Harvard. In this they say "

Every few days, add a minute or so to the standing time until you can do 20- to 30-minute sessions without feeling faint. After that, try to do 20 minutes of wall standing three to four times a week.

"

The part about tilt training is on the bottom of this article.

http://www.health.harvard.edu/newsletters/Harvard_Heart_Letter/2009/August/When-the-lights-suddenly-go-out

[roxie]

@kellysavedbygrace- my dr I'd having me start super slow. He says only till symptomatic and then stop. As time goes on you should be able to add time. Actually I'm not even up again the walcyet, just tilted mattresses & I'll try to improvise from there

[Serbo]

Alaska - I'm all over this.

Is the idea just to do 45 mins with 6 months of practice or is there structure to the program? haven't looked @ journal links yet but will do later.

Aaron

[angelloz]

Do you stand flat up against the wall , or are your feet abit away from the baseboard?? I would like to do this too.

angelloz

[Alaska]

Alaska - I'm all over this.

Is the idea just to do 45 mins with 6 months of practice or is there structure to the program? haven't looked @ journal links yet but will do later.

Aaron

From what I know, you work up to the 45 minutes per day and the one study had participants do it for 6 months. So, I'm not sure how long one would need to continue after the 6 months. BUT, I would be impressed for those that can do it daily for 6 months. There seems to be not much to it, 1) find a wall and 2) standing with your back to it. I'm giving it a try. I want to find some control if this thing. So Serbo (Aaron) I got you down trying with us!! Cool! Keep us up to day with your progress.

Do you stand flat up against the wall , or are your feet abit away from the baseboard?? I would like to do this too.

angelloz

I think the idea to have the back against the wall and feet a little out is so that if one faints, they will drop down to a sitting position and not hurt themselves. So, I assume if you know you are not going to faint you could stand straight up without the wall, as long as you are staying still. Somebody chime in if that isn't the case. So Angelloz, I got you down to. Keep us up to date on how you are doing.

I have to say, at first only I-hate-bananas was going to do it with me and was surprised that others were not going to try this with me. But I'm happy to see a few more jumping in... I should say standing in.

[cma]

I would definitely join you guys, but I have only a few days left till my due date and am worried that with a new baby I won't be able to do it consistently everyday. I will try it on my own though and will be delighted to keep an eye on your progress, if you'll update it publicly.

I was wondering though, is there any difference when one does tilt training, because for me evenings are much easier, but maybe I wouldn't progress as much then, if you know what I mean. Can I still wear compression socks while doing this.

[Alaska]

I would definitely join you guys, but I have only a few days left till my due date and am worried that with a new baby I won't be able to do it consistently everyday. I will try it on my own though and will be delighted to keep an eye on your progress, if you'll update it publicly.

I was wondering though, is there any difference when one does tilt training, because for me evenings are much easier, but maybe I wouldn't progress as much then, if you know what I mean. Can I still wear compression socks while doing this.

You may want to wait, or just do what you can. I would for sure wait until after the baby is born... very exciting by the way. After that, just come back to this forum and tell us you are going to give it a try. Do the best you can and I say at least commit to doing some tilt training time during the day... even if that means 15 minutes. Glad to hear you want to try with us.

As for me, I have been doing the standing this entire week, one time a day for 30 minutes. I have also been trying to just stand more, like when reading emails on my iphone (rather than sitting).

I noticed the last few days I have actually felt worse, but I'm almost certain it has nothing to do with the tilt training. I discontinued the mestionon that I am on, as it is giving me an irregular heart beat and seems to be slowing my heart beat. I had discontinued this medication before due to an irregular heart beat, not being sure that this medication was causing it. After a few weeks it went away. So, I restarted again this month... and noticed the irregular heart beat. So, pretty sure it's the mestinon.

One interesting thing about the tilt training I have found. For 3 years now I have been having a burning sensation on my lower right leg, about a quarter size. We thought it could be some neuropahty. BUT, when I do this tilt training, when I am done with my 30 minutes and lean forward to turn off the timer, that same place in my leg has severe pain when I lean forward. SO, I was thinking that pain could be blood pooling pain. I have never really had signs that blood is pooling, but maybe that burning pain is blood pooling?

[McKenzie]

I'm gonna give this a try, I'll let you know how it goes! I use up so much of my energy just trying to get through the day at work, I feel yucky and not willing to make myself feel worse by exercising in the afternoon/evening. No way I could do it before work or I'd never get through the day!

[McKenzie]

Ugh! I sure don't like that! Nauseous, dizzy, headache starts in and overall ick! I passed out at 31 minutes on my TTT, I stood for 33 minutes, but I did walk a few steps to get my heart monitor. My HR consistently jumps at least 30 bpm when I stand.

I'll go again tomorrow and add a couple of minutes. I sure do want to get better.

[roxie]

You can start slower. As long as you consistently build up over time. That's what's important

[McBlonde]

So this tilt training works even if you are symptomatically within 2 minutes of standing?

[roxie]

I would this so. As long as you gradually build up.

My dr told me not to start against the wall, use mattresses, foam, & blocks to prop it to an angle, even if it's 5-10 degrees. Work in that till you can go 20-30 mins w/out major symptoms. Then go to 10-20 degrees and so on.

[McBlonde]

Well, I up to a big 2 minutes, lol! I've got a long way to go to catch y'all, but I'm going to give it a try!

[Alaska]

It's good to have you on board McKenzie and McBlonde. This is who I have so far that have joined this group to try the daily tilting and when you started (let me know if I missed anybody):

• I hate bananas (7-24)
  
• Sebro (7-25)
  
• Angelloz (7-25)
  
• McKenzie (7-27)
  
• McBlonde (7-28)
  

Keep it up guys! I have to admit, after more than a week going strong I simply forgot to stand on the wall two days ago, as I was camping and didn't think about the tilt training. BUT, I think this isn't going to be a big deal as long as you go for every single day. Even if you can simply get to 2 minutes, like McBlonde. McBlonde, we are just happy to see you doing it. Before you know it, you will be at 5 minutes then 10 minutes. Wouldn't that be great!

Now, I've been noticing I can only get 30-35 minutes until the bottom of my feet hurt so bad I have to stop. It's not my whole foot, just the bottom and more the outside bottom of my feet. Is that pooling, or would anybody get that if they stood still that long. Now, I don't wear shows, so maybe I should try it with shoes on.

I have to also say, the whole thing has made be wonder about my tilt test I did. I can go 30 minutes with NO mental symptoms of dizziness or anything. When I did my tilt test, I past out in less than 10 minutes and felt horrible in 5 minutes.. like being dizzy and wanting to throw up. So, I need to ask the Doctor what the difference. Was it because while I was doing the tilt test somebody was talking to me and I had to mental process. Mental processing is my major trigger. When doing the tilt training at home, I'm just watching TV. No mental stuff. Just curious about it. Makes me even question if I diagnosed right. I think if I have NO changes in symptoms in 4 weeks, it will make me wonder more. But, I am still doing the tilt training. If anything, I think it's good for the body and burns some calories. Another thing I might try is to lie down for 10 minutes then get up and start the tilt training. Maybe this would push my body a little harder, similar to the tilt table test??