Eillyre

Good luck, Ernie. Hope your trip will not be too wearing and that your visit will be very useful! You'll be in my prayers! Angela

Hi Rita! Glad to hear about the good news for September! I hope it will be a really enlightening visit for you. As regards the shaking, I'm a passer-outer not a shaker. I was diagnosed with a seizure disorder (never caught on moniters, but all the epilepsy specialists I saw said they were willing to stake their careers on a diagnosis of partial-complex seizures), which resulted in a longstanding relationship with EEGs. Regular, sleep-deprived, 5-day, etc. -- I even had to trot home looking like a Queen Nefertiti-inspired horror movie monster for a 48 hour take home EEG! I just had one done again last month to make sure I can safely stay off of the epilepsy meds, and I was very impressed that technology has certainly made them easier. My mom used to have to scrub my scalp with nail polish remover for an hour and a half afterwards and still I'd have dried chunks of glue stuck in my hair. Now the adhesive gel they use washes right out with warm water, so it's an easy, pain-free test! That's a bit of a rambly way to wish you the best of luck with the EEG testing -- time for bed, I think! I'm happy to hear that the doctors are keeping an open mind! Angela

I must be part of a small minority because I really didn't notice any side effects on Mestinon besides some slight, sporadic stomach cramps the first week or two. However, my fatigue and all other symptoms had me feeling so bad to begin with that I may just not have noticed anything else. Sorry you're having so much trouble! It's been such a big help for me, so I hope you'll eventually be able to say the same. If things get too bad, you might try calling your doctor to find out if this is too irregular a reaction for his comfort. Here's hoping for a less dramatic next few days! Take good care of yourself! Angela

Just thought I'd add a quick note. Sounds like you've looked into the nutritional/dietary information regarding increasing iron intake, so I'll appologize in advance if this is old news or not applicable. My sports nutritionist once advised me to avoid consuming good sources of iron and calcium at the same time (e.g don't have a big glass of milk with your beef, don't have iron supplements with your yogurt at breakfast); apparently, the calcium retards iron consumption or vice versa. She suggested trying to space them away from each other throughout the day (have the milk as a mid day snack rather than with dinner, etc.). It won't solve the problem I'm sure, particularly since this has been a long-standing struggle for you, but I didn't know if it might help at all. Just a thought! Have you considered consulting a good medical nutritionist for help? Glad to hear that you're feeling a little better! Angela

I'll be praying for you! Angela

Hi Dayna! I am already on Mestinon (prescribed by Dr. Low at Mayo this past April) and have found it very effective in reducing POTS symptoms. Once I reached the full dose, I noticed that I rarely experienced lightheadedness and brain fog was not nearly as bad. I haven't had toruble with side effects, except for some slight abdominal pain/cramps on rare occassions when I first began taking it. I've heard that for some people it can cause more severe abdominal pain -- glad I'm not one of them! It tends to be halpful to gradually work up to a full dose (took me five weeks to get up to 180mg per day) and take it with food and wash it down with plenty of liquid. The good news is that it now comes in extended release, so now you can just take 1 pill in the morning instead of 3 a day! A friend of mine (also with POTS but not on the forum) has been taking Mestinon for over a year and says it's what has gotten her to the point of being able to function again. Hope this is of some help! Happy research! Angela

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. Angela

Dayna, As I could never afford to get acupuncture treatments on a regular basis as a preventative measure for migraines, I can't help you there. However, I did find that it was extremely helpful in the midst of migraines. I went through a period of five months of constant migraine pain (woke up with it, had it all day, fell asleep with it); it was the worst time in my life until I got POTS/CFS. Nothing lessened the pain until I started acupuncture. During each session, the pain increased during the first 5-10 minutes, but after that the pain just melted away to a much lesser degree. Eventually, the migraines stopped completely for a number of months. I began to have some short migraines later when I was having a lot of trouble with dysautonomia symptoms, but they were to a much lesser degree and were nothing that tolerance and sleep couldn't handle. So, I don't think that acupuncture has any long-term ability to stave off migraines, unless perhaps if you have regular treatments, but I won't speculate on that point. All in all, my experience with acupuncture has indicated that in my case (I can't speak for anyone else), the treatments help push the migraine through faster. Hope this helps! Angela

Welcome Becky! I'm 21 with POTS & CFS. I've had acupuncture treatments for my migraines and gained tremendous relief from them. A skilled and knowledgeable acupuncturist is a treasure! I did have some acupunture sessions early in the onset of my dysautonomia symptoms, hoping that it would be as helpful as it proved with the migraines, but found that it did very little to improve them. I did feel, as you mentioned, more relaxed certainly, but the slight tiredness that I usually experience after acupuncture merely added to my fatigue. I couldn't afford to continue with the treatments without seeing more benefit. Hope things go through with the nhs and that you start to feel a tad less POTSy! Angela

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! 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! 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, Angela 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!

Hi Goldie! I'm so glad a fellow mestinon-taker is also finding relief! I've improved so much since Dr. Low had me start it. I get some weird looks when neurologists find out I'm taking it without having M. Gravis, but hey, it works! Hope it continues to help you function better! Angela

Currently living near Princeton in New Jersey, USA. Spent several years of my childhood in the Republic of Niger, West Africa. You're right, Merrill. It does feel like a pageant! In honour of Miss Congeniality 2? Angela

Just wanted to add my little welcome! Hope you'll find the support and suggestions that you need! I think Merrill's guestimate on our age range is pretty close -- I'm 21. What activity level are you at right now? Are you able to attend school or work? Welcome again! Angela

Hi Alicia! Welcome to the family! Sorry to hear about your trouble -- it's so hard to be out of commission in what is supposed to be "the time of our lives!" I'm 21, diagnosed with POTS and CFS. It started a year ago when I was just starting to get my career as a professional ballet dancer off the ground. I moved back in with my parents last July. Feel free to e-mail or PM me! I'd love to talk -- I'm still tossing around college thoughts, though I'm not quite well enough for it yet. I'm hoping maybe Spring/Summer 2006?! Angela

Hi Ann! Sorry to hear about the creepy crawlies trouble. Have you ever tried taking Melatonin for improving the REM cycles? It's supposed to be quite safe and is not habit-forming. Some people take it for a couple of weeks after a very sleep disturbing event (death in the family, wedding, child in the hospital, academic exams, etc.) just to "reset the sleep clock", and can then discontinue its use without any difficulty. A friend of our is a world traveller by profession and takes Melatonin to survive all of the time zone changes. I was have abyssmal sleep cycles until Dr. Low prescribed it for me. A word of warning -- some people experience very vivid dreams on higher doses of it, but all you need to do in that case is to decrease the dose. Just a thought. Sorry if you've already tried it! Angela

Welcome to the family Linda! Hope we can help give you some of the support you're seeking. Hang in there! Angela

Good Luck Steph! I'll be praying. Hope you'll be back up and around (as much as we get ) soon! Angela

Hi Ontrack! Welcome to the family. Yes, it's hard to be so young and unable to work (from one who's there, too); glad you found us! Angela

Congratulations Persephone! I'm so proud of you! I, too, LOVE delving back in history, although medieval studies have not been my main focus. Keep up the good work at Oxford -- enjoy your library time! Angela

Hi kconnections! Welcome! Feel free to ask any questions you need to and talk out any problems that arise -- POTS is confusing and frustrating for everyone, especially at the beginning. I've just past my one year mark and still find this site a tremendous help. Angela

Persephone, Congratulations on the techno breakthrough! I have to admit that I haven't the foggiest idea how one goes about getting any sort of avitar, let alone one so coveted as a Colin Firth! Thanks for the laugh and the hard-earned pic! Angela

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! ) 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

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! ), 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

My 2 days ran about $3,600.

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