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About Alaska

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  • Birthday 01/05/1974

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  1. I had the slower heart rate thing and irregular heart beat... then I didn't take it anymore
  2. Just an update. I have been doing the tilt training and haven't noticed a difference yet. I must admit, I probably do the tilt standing 5-6 days out of 7 days of the week. So, I miss some days. But, 85% of the time I'm doing it. I don't get pre-faint symptoms standing, but have to stop after 30 minutes because my feet hurt so bad.
  3. I have the most problems when sitting still. Seems Midodrine helps me more when I'm having to stand a lot, and not as much when I'm sitting. I'm on the fence right now about taking it at all, as sometimes I wonder if I feel worse. I was taking Midodrine in combination with Mestinon, and seemed 20-30% better. But, then my heart started having slow beats, missed beats which made me way too self aware and the being too self aware is when I start feeling bad and dizzy and fearful. Before all of this I was taking Adderall, and it was helping some. I may go back to Adderall to see if it works
  4. Your comment is so true for what I think we all say, "I made it through". I often will tell my wife when she will ask "how was your day" and I will say "I made it"... and not joking, just glad I made it another day. THIS IS NO WAY TO LIVE LIFE! I SO hope we all can start living life and find solutions!
  5. I was on vacation this week and had some more time to thing about stuff. I was just wondering why I (and others on this forum) are not diagnosed as chronic fatigue syndrome. I sure seem to have the symptoms of it. Right now the Doc is going with neurally mediated hypotension. I guess I'm wondering if having the diagnosis of CFS would make any difference to treatment. Also, is CFS really even accepted by doctors now? Doesn't seem like it is. I have seen studies where a large percentage of people with CFS have positive tilt table tests.
  6. Just an update on my tilt training. Went on vacation last week and only did tilt training half the time for a week. That *****, because I really want to give this a shot. I'm sure that is what happens to a lot of people doing this. Some of the days I didn't do it there "just wasn't time" or I "forgot". Then two other days my foot was hurting out of the blue where it was hard to walk, so it hurt too much to even just stand on it. But, I plan to get back into it tonight. I guess at least I did it 50% of the time. Part of me wonders if this is really even going to help. I'm sure that's
  7. And you know, tomorrow it might be back to 3 minutes and that's ok... but looks like you are building more tolerance standing. That's great! Let's hope for 5 minutes tomorrow!
  8. 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.
  9. 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
  10. 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. I think the idea to have the back against the wall and feet a little out is so that if one fai
  11. 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
  12. 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.
  13. I think the main idea is stand as still as possible, with arms down if possible.
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