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Up & around again!


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Hello dear friends!

I'm sorry for my somewhat extended absence from the rest of the dysautonomia community, but I do have a good reason this time! :unsure:

I started to notice a significant decrease in my lightheadedness and moderate improvement in the brain fog department after I reached the full dose of Mestinon that Dr. Low prescribed. As my energy level was still dismally low, I began taking the NeuroHelp supplements that Dr. Low had pointed me to. Amazingly enough, after about a week on them, I woke up one morning, and hopped (yes, quite literally!) out of bed, brimming with energy. I walked a mile that morning, stretched, did arm weights, a little light barrework, took a shower (wonders never cease!), and even gave myself a pedicure! By about 1 pm I was really slowing down, but was totally determined to take the shoe shopping trip that I had planned all morning. It only lasted a half hour, but it was a start. It felt so wonderful to be able to do so much -- I felt decades younger! :angry:

The most astonishing thing is, though, that I have maintained a similar activity level for the past 3 weeks, with one brief setback when I had to start rationing my Mestinon due to an insurance muddle (lightheadedness and brain fog made a resurgance, curbing my activity). I can usually walk about a mile each morning, handle short errands, and study for about 30+ minutes at a time. I've even started dancing around the house again (my mom almost cried) in short, spontaneous, glorious spurts!

I am by no means cured. I still have to take frequent and lengthy rest breaks, cannot manage a half a dance class, hold a normal job, or handle an official college-level class -- but everything is so much better than before!

It's a bit of a dangerous time for me, as the dancer in me urges me to plow through the low energy moments to get things done, so I'm having to monitor my zeal and impatience carefully. I do not want a setback!

I'm not sure how long this energy kick will last, but I'm determined to wisely make the most of as long as it does. Thank you all for your prayers and encouragement! I just thought you'd like to share in the good news (finally!). :) Take heart, dear ones. Thank you all for your faithful friendship! I'll try to keep in touch more frequently.

With love,


P.S -- All my warmest greetings to the newbies that I've missed welcoming during my absence. I'm looking forward to getting to know you better! :)

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That's great that you are able to get up and around!! Enjoy it, just don't over-do it :( We never know when we might crash, so remaining cautiously optimistic is always the best way to go. I hope that you stay at this high point and can begin to enjoy life much more, though...yay!!!!!

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Thanks all for your cheers!

Miriam, I'm taking NeuroHelp Premium supplements, the kind that contain alpha lipoic acid, evening primrose oil, fish oils, etc. It's taken as two 7-pill installments each day (you can space them out more if you want), so people unaccustomed to swallowing pills might have trouble there. It's also a little pricey at $90 a month, but if it works, I'll pay for it! :(

When Dr. Low mentioned it to me, he made sure that I understood that he has no medical research to support it (unlike traditional medications), only anecdotal success stories. He first encountered it when his son found it on the web and began taking it for his disabling CFS -- his improvement was so dramatic that Dr. Low looked into it and eventually started taking it himself! :)

As with any other treatment regimen, it may not work for everyone, but I was willing to try just about anything and have found it helpful (and devoid of any nasty side effects!).

When I called in for a second NeuroHelp refill earlier this month, I was told that they're in the middle of changing manufacturers, which means that they won't receive any new shipments for the next two months. I bought up the last 5 boxes (5-month supply) that they had just to be sure I wouldn't end up short! :) So if you are interested in giving it a shot, you might want to wait until Aug. or Sept. to order.

Best of luck if you do end up trying it.


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