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Eillyre
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Dear friends,

Spent last week at Mayo and am very pleased with my visit with Dr. Low. He confirmed my initial diagnosis of POTS with CFS. He has me trying mestinon for the POTS and melatonin for the sleep problems. Too soon for the mestinon to work, but the melatonin has been wonderful! I can actually get a good nights sleep only waking up twice -- and no pain!!!!!!

He's not sure what to do about the fatigue (since it's still a bit cloudy in the medical world), but suggested that after I'm on the mestinon for a while I try a certain vitamin/herbal mixture that his son found helpful for his chronic fatigue -- there's no medical documentation of it working, just anecdotal success stories. We figure it's worth a try at least. If I'm still having trouble on the mestinon, he suggested I come back to see him.

Thanks for all of your prayers and help! It's been a while since I posted regularly, but between an extended pre-Mayo potshole and the post-Mayo fatigue, my little energy bank has been majorly overdrawn. :) I'll be back on again soon. Thanks again!

Angela

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Hi Angela,

I'm very glad that your Mayo visit went well. I use mestinon as well and guess what: it hlped me sleep MUCH better. It also helps with my temperature. I used to be very cold and nowadays I'm a bit warmer. When I forget my meds I start freezing again, so that's a very good warning to take them :) . Wish you very much luck with your new meds!

Corina

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Guest tearose

Welcome back Angela!

Hope you find relief with the new treatments and will have many good nights of sleep!

Is the melatonin a prescription or is it an over the counter supplement?

Will your local doctor be maintaining you?

Good luck, tearose

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I'm so glad you had a good Mayo experience and best of all got confirmation and answers!! :rolleyes:

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The melatonin we bought at one of the pharmacies at Mayo and I've since found a wholsale supplier online -- so it's over-the-counter. My dad said that the catch with melatonin is that it's dosage is not well-regulated at all in the U.S (much better control over that in Europe), so it's best to try a brand and stick with it so that the amount you're getting each night is consistant.

I'm going to try to have my neurologist here regulating mestinon and generally being my primary contact in all matters neurological. My first neurologist (who's been taking care of me for ten years now) has moved to Arizona and transferred all of my records to the neurologist moving into his office. However, when I called to make an appointment with the new doctor to get him caught up on everything that's going on, his secretary informed me that he only treats migraines, which are only part of my bag of problems. One of my dad's colleagues is the senior neurologist at a nearby hospital and medical school (once again came to my rescue! :rolleyes: ), and he's recommended another neurologist there who will treat (and relish!) my whole assortment of oddities. I don't see him until June, but it sounds like he'll be willing to join in as maintainer-in-chief.

Thanks again for all your encouragement!

Angela

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Angela!!!!!!!!!!

HEEEEEEEEEEEEELLLLLLLLLLLLLLLOOOOOOOOOOOOOOO!!!!

So very, very glad to see you here again! I've missed you! You always have such insightful, smart, funny and beautifully written posts!

Just wanted to say that I am so grateful that you had a worthwhile trip to Mayo...and that you will continue to find answers and healing...

Emily

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Hi

What is the herbal/vitamin that Dr. Low recommended? Dr. Low is my doctor for POTS too. Mestinon has helped me to have less peaks and valleys during the day. I was able to come down a little on my midodrine dosage. I hope mestinon helps you too. It did take awhile for my tummy to adjust. Can you tell I have young children from the use of the word tummy? It was the first word that came to mind!

Do you know what diagnosis his son has? He told me that his son has similar symptoms to me, but I felt bashful at the time asking him the diagnosis. I bet that his son's illness must have influenced his interests in this field.

Karyn

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Dear friends,

Spent last week at Mayo and am very pleased with my visit with Dr. Low. He confirmed my initial diagnosis of POTS with CFS. He has me trying mestinon for the POTS and melatonin for the sleep problems. Too soon for the mestinon to work, but the melatonin has been wonderful! I can actually get a good nights sleep only waking up twice -- and no pain!!!!!!

What's mestinon? I've never heard of it...I'm intrigued and would like to know more about it. I wonder if it's available here in the UK.

Can you believe that midodrine (ProAmitine) is totally unlicensed in this country? You have to take it under an NHS hospital consultant or you can't get it atall. GPs don't prescribe it! (so I'm told)

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Hi Emily! Glad to see you back! I've missed you too!

Regarding all meds questions....

The vitamin/herbal mixture that Dr. Low recommended is called NeuroHelp. It's available online at www.neurohelp.com in two different combinations. The one that he recommends (and actually takes himself after seeing the difference it made in his son! :blink: ) is the NeuroHelp Premium containing Evening Primrose Oil, Alpha Lipoic Acid, etc. It's a little pricey at about $90/month, but I figure it's worth at least a try. Eli, I must admit that I didn't ask about his son's diagnosis; all I know is that he had the same thing I have and was a professional mime before onset of symptoms, which left him unable to do anything until he tried this little concoction.

Persephone, mestinon (pyridostigmine bromide) is a drug commonly prescribed to treat myasthenia gravis. I don't really remember how exactly it works, but as I recall it elevates the levels of acetycholine to improve nerve signals, or something like that. It may well be available in the UK.

Radha, I'm taking Twinlab brand melatonin -- one 3 mg capsule each night before bed. It's helped me to actually achieve restful sleep at night with only two brief awakenings without any pain. I've also noticed that I'm not nearly as cold as I was before; I haven't had to use my trusty electric blanket in a week eventhough it's still chilly at night -- I'm actually generating my own heat again (a novel idea from this quadrant!). :) Other than improving sleep cycles, I don't think it is intended to resolve neurological problems. Two tips I've picked up from doctors and other melatonin takers:

1) Try to take your dose at approximately the same time each night for maximum effectiveness (e.g 10:00pm, 9:30pm, 9:50pm rather than 7:00pm, 11:00pm, 8:00pm).

2) If you find yourself having very vivid or disturbing dreams, you'll probably be fine once you drop to a lower dose.

Hope these help! :)

Angela

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