Eillyre

Melatonin was a life saver for me! I had no negative side effects and sleep very well. I didn't have trouble coming off of it when I no longer needed to take it, either. You may experience very vivid dreams or heavy sluggishness if the dose you take is too high for you. Angela

Welcome, Laura. Sorry I missed you earlier! Happy to have you join our chats! Angela

Welcome, Barbara! Hope you find some answers soon! Angela

I'm with futurehope, Lisa. Focus on what you can do -- thinking about the things you can't will just be depressing. Between POTS & CFS, I can certainly sympathize with your frustration. It's hard to feel like your capabilities are just disappearing down an ever enlarging abyss. The medicine merry-go-round never helps, either. However, all is not lost. There are still things that you can do and that you will be able to do in the future. You have a good doctor on your side, too, which is great news! Even if you don't have CFS, it is very important to pace yourself. I've learned the hard way; multi-month recovery periods from simple activities have a way of getting the message across! I'm amazed that you were able to wallpaper at all -- that's a serious undertaking! I know a professional painter who cringes whenever he has a client wanting re-walpapering done! If you were so sick afterwards, your body seems to be desperately trying to tell you that it was way to much activity at this point. Try working on doing small things first. Once you can do those without difficulty, attack something a little bit more demanding. It's just like exercise -- you have to start slow and gradually work your way up. Try keeping lists of small things that you would like to accomplish -- it's so rewarding when you finally get to cross one off the list with a triumphant flourish. That way you also have a record of your accomplishments for those days you're feeling down. Keep your chin up! You will triumph! From one "retired" conquer-then-crash POTSy to another, Angela

Welcome Theresa! I too had an excellent visit at Mayo -- best hospital I've ever been to. All of the staff was very friendly and helpful and I never felt rushed. Everyone listen to what I had to say, treated my problems with great respect, and never suggested that "it's all in your head" or put me off. Dr. Low read all of my paperwork and explained what tests he wanted and why. After all of the testing, we had a LONG appointment in which he explained all test results, presented his diagnoses, and detailed the very individualized treatment plan he was suggesting. He gave my parents and me the opportunity to ask all the questions we wanted, answering very explicitly and honestly. We were very impressed by his thoroughness and never felt rushed in the least. In terms of a treatment plan, I agree with Poohbear -- don't expect a miracle cure. Luckily for me, Dr. Low's treatment plan has my POTS under control to the point that if that was my only condition, I could be living a very normal life right now. That is not the case for everyone. I went in fully aware that he might not be able to treat my condition -- he is a doctor after all, not a magician. I have found that it's best to look at treatment the way you do a jigsaw puzzle. Try to work on getting as many pieces together as possible, preferably the biggest ones. Maybe the doctors at Mayo will be able to find ways to help alleviate at least some of your symptoms -- any improvement brings you closer to better health. The one thing that Mayo tends to be not so good at is follow-up after you get home. Because it is primarily a research/diagnostic hospital, it can take them a while to get back to your letters -- I have, however, always received letters back from Dr.Low responding to all my questions. Just be aware that it can take a while. Hope your trip is very worthwhile and provides you with some information about what's going on with your body. Keep us posted! Angela

Welcome to the family, Rachelle! Glad you've found us helpful! Angela

Sending my good luck wishes, too, Evie! I hope it proves a better experience for you this time around. I'll be praying for you! Angela

I had Isoprel through the IV also.

Mine aren't heavy, just normal.

Sara, When I started taking Florinef it did work very quickly. It was not a big fix, but enough of an effect initially to make it worthwhile taking. My Florinef headaches never went away while I was taking the medication. Eventually the Florinef stopped making any positive difference in terms of my BP, so after playing with doses, I stopped taking it and the headaches disappeared. This post is by no means meant to condemn you to headaches for as long as you take your meds -- I'm just adding my experience. I'm so happy it's helping your BP and I hope the headaches subside soon! Angela P.S. By the by, I don't think we've met yet. Welcome aboard!

As of this coming Monday I'll be down to only 2. Hooray! I was getting so tired of doctor visits that I stop bothering to go to the opthomologist -- I figure my eyes are the least of my worries! So, currently I have: PCP -- handles CFS and anything else that crops up (actually knows a little about dysautonomia!) Dr. Low -- handles POTS long-distance Angela

Just sending a cheery welcome your way, Babs! Glad you found us! Angela

I felt horrible on Midodrine, too. Someone else asked about this topic not too long ago so if you do a "Midodrine" search (upper right hand corner of screen), you may be able to pick up the responses from that post to give you a fuller spectrum of experiences. Hope you're feeling a little better soon! Angela

Glad to hear you're feeling ready to be up and about! Nice way to start the new year, huh?! My only suggestion is to cut the exercise back to what you were able to handle without symptom flare-ups, at least until you can get into the cardio doc and discuss your trouble. Better to do some consistantly than try for too much and trigger a backslide into the POTShole. Are there particular exercises that always make you too tachy? Can you just skip those so you can do the rest of your workout without trouble? Hang in there -- hope you get to see the cardio soon & find some answers! Angela

WI mom, I tried Midodrine before I went to see Dr. Low -- my cardiologist thought it might do the trick. Unfortunately Midodrine and I do not get on very well together ; I was far worse on it than before! I was very sick to my stomach, all my symptoms got worse, and half the time I wasn't even really aware of what was going on -- it was as if I was stuck in a blurry time lock and couldn't get out. Very, very strange and disturbing episode in my life -- after 3 weeks I stopped taking the pills and told the cardio just how much worse it made me feel. Mestinon was Dr. Low's first preference for medication for me, although he didn't explain why he chose that over others. He explained the mechanisms of POTS (at least in my case) and said that the way Mestinon works, it might correct the problem. He suspected that it would work in my case, but had some other ideas if it didn't. Part of it might have been that fact that my POTS was apparently mild compared to most of you on the forum. It was enough to severly disturb my lifestyle, but my HR didn't appear to go really hog-wild on moniters. My HR started at 38, so most doctors were hesitant to put me on beta-blockers or anything else that might drop it lower.

Happy Birthday!!! Any special birthday traditions in your family? Enjoy! Angela

Bamagirl, When one of my vertebrae was out of place I occasionally lost feeling in one leg, but that stopped once my neck had everything back in place. When I did testing out at Mayo, Dr. Low said that I didn't have any nerve damage. Meliss446, just to back up rqt9191's explanation of Dr. Low's business, when we asked him last April how many people he takes, he told us that he has to turn down 80% of the patients who request him simply because there isn't enough time to see them all. He took me when I wasn't "pure POTS" (POTS, CFS, wacky migraines, etc.), too. I think he genuinely would like to see more patients and get a chance to help them, but simply hasn't found a way to create more hours in a day yet. I'd give it a try if you think it's worth seeing him. Bamagirl, ditto on making sure you give him ALL your symptoms! He's fascinated by the most seemingly inconsequencial information -- very interested in the high arches of my feet (and my mom's too!)! He leaves lots of time for questions, so make sure you have them written down and ready to go. Let us know if he does the Sweat Test aka "Shake 'n Bake" -- yellow powder that looks like goldenrod pollen, huge device resembling a toaster oven, and lots of purple skin! A bit warm, but completely painfree! My dad had a patient the other day who came in with the results from her test; my dad took one look at the photos and said "Ah, I know where you've been!" Best of luck! Angela

Evie, yes, I miss dancing so very much, but I am feeling excited about the prospect of starting again in the future. I have had some muscle pain -- not consistantly, but occasionally. For the most part I try to avoid overuse muscle pain by stretching extensively before activity and getting my body good and warm before beginning more taxing exercise. I also make sure I start with a low number of reps and gradually increase from there, focusing on quality of muscle usage rather than number. Things that are more difficult for my body in the Pilates matwork I save until later in the day when my muscles and joints are more loose and less stubborn. As for unexplained muscle pain (when my calf muscle starts throbbing when I'm lying down doing nothing ), I avoid doing things that will stress that muscle more. I may focus more on stretching and arms that day and reduce the amount of walking I do. I'm not sure if the pain is caused by some nerve going haywire or what, but I figure there's no reason to stress he muscle out any more. Usually it goes away on its own. I don't experience this pain on a regular basis, so I've never bothered looking into medicine or anything like that. Did you have this pain before you began at the gym? Is it part of a pattern? Could it be your muscles reacting to finally being used again (sometimes that kicks in 2-3 days afterwards and disappears as you continue in your exercise regimen), or does it really feel more like that peculiar unexplained, CFS-related pain? Do you have someone who can look at your technique to see if there's something there that causing your muscles too much stress? Are you getting enough potassium? Just a few ideas you might want to think about. Hope you can come up with something so you can enjoy your therapy! Angela

You all are great! Thanks for celebrating with me! WI Mom, you expressed interest in my story. I'll give you the short version. In Feb. 2004, I was just recovering from a bizarre 5-month migraine -- that horrible headache all day & night for 5 months straight along with sporadic loss of vision, loss of feeling in one leg, poor sleep, poor memory, always feeling cold, sensitivity to light and noise, shaking hands, etc. Neck X-rays showed that my C2 vertebra had popped out of place & gotten twisted (I still haven't a clue how that happened -- no sudden trauma or pain that I can think of). Through readjustment of vertebrae in my neck by a Chinese orthopedic surgeon (very gradually over 6 weeks) and weekly acupuncture (2 months), I returned to dancing and normal life without any further symptoms. I moved to NYC (SO happy to skip the daily commute!) and was studying to become a professional ballet dancer. I had a late start (age 13 1/2), but showed considerable promise; at that time I was studying at American Ballet Theatre taking class alongside many of the stars of the ballet world -- you can imagine how thrilling it was for me! I was completely fine in March 2004 (age 20 by the way), but in April, I bagan to have difficulty with tremendous fatigue. Then I began to have episodes of my heart racing, shortness of breath, and greying vision. My memory began to get worse (much to the frustration of choreographers I was working with!) -- I would find myself not knowing where I was or where I was supposed to be going bad news whe you're living in the city!. I did full cardiology work-ups and other tests looking for more unusual conditions, but all that came of it was that my heart was perfectly sound & that my BP dropped 20+ points when I stood up. Florinef and increased sodium intake helped initially, but my condition continued to deteriorate. I had gradually cut back my dance schedule to the point that I was not taking any ballet and only a little ballroom (which was less of a stress on my body). A TTT proved "inconclusive" even though I felt so tremendously wretched during it and for the following 2 weeks. Finally in July 2004, I collapsed at my parents' home in NJ after a ballroom performance, unable to return to the city. I've been living here since then. My symptoms continued to get worse: fainting when standing, feeling lightheaded when sitting up too long, really bad brain fog & concentration, difficulty speaking/following conversations...the list goes on. I saw an electrophysiologist at UPenn in September 2004 whose initial diagnosis was POTS and recommended I see an expert on it. Dr. Low saw me in April 2005, confirmed the mild POTS and CFS diagnosis, and gave me a new treatment regimen. He was pretty sure he could handle the POTS, but said that the CFS was anyone's guess as to when or whether I'd get over that. The Mestinon has totally controlled the POTS end of things so long as I don't overtire myself -- when I do, the POTS symptoms come back (although in a lesser form than before I began the Mestinon). The NeuroHelp supplements did help to a point with energy and brain function although in my excitement at regained energy I overdid things a little and began a plunge to the POTS hole. It was very foolish of me, but I learned. This time around, I'm being much more careful about pacing myself. Right now, I plan to continue with a graduated exercise regimen & see where that leads me. In the meantime, my dad and I will continue to look at other possible solutions to the various symptoms. I must say, I'm getting a superb medical education out of all of this -- when I can remember everything I'm learning! As for your questions: 1) Since I was 20 when the symptoms started I don't think puberty or growth spurts had anything to do with it. I didn't have any virus or illness, either, to attribute the sudden onset of symptoms. I think that the neck problem is more suspect, although none of the specialists I've seen have said anything to that affect. 2) It was very apparent to me when I was getting better, although I hate to make it sound as if this is a permanent "cured" situation -- we have no idea if or for how long this will last. Just being able to sleep at night reduced some of the more peripheral symptoms (e.g. always feeling cold) -- I could get by comfortably wearing a turtleneck and wool sweater indoors as opposed to 3 sweaters, a parka, and gloves. When the Mestinon began to kick in (about 3 weeks after starting it = mid-May 2005), I stopped fainting fully and I could stand/ sit up for a longer amount of time before feeling lightheaded. That has gradually improved over time allowing me to do so many things now that I couldn't before -- take a shower, stand up to do arm weights, etc. It was not a lightning-fast sudden change, but I evaluate my abilities throughout each day and keep track of changes that I've noticed. I'm very much in favour of celebrating the little steps -- my mom and I have had frivolous little celebrations at home over little things that I've been able to do such as taking a serving bowl out of an overhead cupboard without getting lightheaded, walking down the driveway and picking up a garbage can, or taking a shower without feeling lightheaded. The fatigue has been the most disabling symptom and the hardest to gauge. I do have very sensitive body awareness (that's what comes from being a dancer!) so I have an easier time feeling the minute changes each day than some other people. But again, if you pay attention to how your body manages energy each day and watch for trends over each week, you will notice patterns. For me, about a week after I took the NeuroHelp supplements, I hopped out of bed full of energy. I just knew I could do more than usual. Of course then I was too zealous and overtired myself, resulting in a downward spiral. I rested for a few weeks to give my body a chance to get over it and then gradually began to try to build my endurance. One day I would make a sincere effort to walk around the perimeter of the living room. Once I could do that comfortably on a regular basis, I would try adding on more rooms. From there I worked on walking down the driveway and back. The goal is to work your body a little more without exhausting yourself -- over time you should be able to accomplish a little more than before. There is such a thing as starting exercise too soon. I had a doctor that encouraged me to start walking before my body was ready and, sure enough, calamity ensued. As soon as I started I knew my body was too tired and by the time I finished my brief walk, I was totally wiped out. The exercise should not exhaust you -- challenge you, yes, and perhaps make you feel a little tired from the work, but not exhaust you or make you feel ill. Better to start with small exertion like ankle flexes or leg lifts in bed and walking around rooms in the house. From there you can work up. I'm very big on keeping an exercise log, too, so I can make sure I'm not trying too much to soon. It's also helpful on those days your body isn't up to much exercise -- you can look back and say, "Hey, maybe I can't walk quite as far today, but at least I'm doing more than I was two months ago!" Don't be overwhelmed by disappointment on those "recuperation" days; all bodies need them. I try to think of them as vacation days -- doesn't always work, though . I also try to stick to a general routine -- flexible enough to cater to my body's needs, but structured enough to encourage me to live more normally. Chalk up another epic post to my record! Sorry this is so long, but I do like to be thorough. If you or your daughter ever wants to talk or ask questions, I'm very happy to help in whatever way I can! PMs are welcome! Angela

Just wanted to welcome you, Jen! I don't have many answers for you, but hope you'll be able to get to the bottom of things. I was absolutely miserable on Midodrine (much worse on it than I was beforehand! )so I can sympathize. Hang in there! Angela

Thanks all! Dayna, I didn't start the regimen until I felt that more activity wouldn't set me back. I've tried before and I guess it was just too soon -- major setbacks ensued and it was very discouraging. This time my body really felt capable of handling more than "survival" activity. I know that the CFS symptoms are gradually getting better with exercise, but I still have to watch myself carefully. Nancy, I'm part of the ID club, too, although nowadays I just make sure someone is at home & knows where I am. When I first started my dad wouldn't let me out of the house without being fully armed with cell phone and Medialert necklace! Glad to hear you're able to exercise also! I'm not able to work yet -- I still have to rest frequently and my cognitive function is only just starting to improve after a difficult several months. I couldn't concentrate on anything for very long, I had trouble speaking and following conversations, memory was very poor...I just say that my brain was en vacance! I am able to listen to 2-3 30-minute lectures and write a little each day now, so that's exciting too. I can socialize to a point; church is very difficult for me still and when friends drop in over breaks I need to rest after about 30 of chatting. Mom has been taking me out on short outings once or twice a week to get me back "in the world" as well as work on mental stamina -- go to a quiet store, or the library, small restaurant, etc. It's more stimulation than I have at home alone, but not too overwhelming. Afterwards I usually have to spend much of the rest of the day doing "easy" activities, but I am able to process more noise and travel bit by bit. Car travel is tiring (is it the visual stimulation? ) but more bearable -- most of the time I don't even have to have my seat tilted back very far now. Why? Have you noticed any trends? I forgot to mention that I started using a light box (like people with SAD) about 2 weeks ago because we had noticed that I did much worse on cloudy/rainy days even though I never exhibited SAD symptoms before. My dad & I hunted around for articles about it and found some studies in which some people with CFS noticed some improvement of symptoms when they used a light box. Let me emphasize those "some"s -- the studies did not encompass the full spectrum of CFS patients, nor did they demonstrate improvement of all CFS symptoms. I guess the reasoning goes that because so many people with CFS don't get out of the house much, they don't get as much exposure to sunlight as the brain requires; for a portion of the CFS community, that extra dose of sunlight from the light box is enough to improve cognitive function enough to alter the severity of certain symptoms. Quite fascinating really! At any rate, we were willing to give it a try & my new PCP gave the go ahead. My mom's boss was kind enough to lend me his son's lightbox (son is away at school now), so for the past 2 weeks now, I've been up bright and early at 6:45 each morning with my lightbox going and have indeed noticed some changes. I am able to accomplish more on overcast days, as well as "start my day" earlier than before. I used to have major trouble doing anything before 10am (even if I was waking up at 6:30 or 7:00am), but now after 30 minutes in front of the lightbox, I'm able to do quality exercise and studying. I've also been able to stop taking Melatonin to help me sleep since I started light therapy. It is by no means the golden key to my heightened level of activity -- that started 2 weeks before -- but I am finding it worth my while. Thanks again for your encouragement! Angela

Hi all! Just thought I'd pop in and give a quick update. Some of you have mentioned in the past that we need some more "success" stories; I can't claim to be completely cured, but I have joined the POTSy rehab club! I began a self-designed physical therapy regimen 4 weeks ago and so far I haven't had any major setbacks! It's been slow (began with just walking across the living room) but at this point I've worked up to consistently walking 1.5 miles each day! I'm also doing arm weights, stretching (so nice to get back to splits on the wall again!), and a little Pilates matwork. I keep a log to curb my tendency to overexert myself as well as to have proof of my accomplishment when I'm feeling a little down. I'm finally feeling a little closer to my age and loving it! Nice start to the new year, huh?! Thanks for all your prayers, holiday e-mails, etc.! I'll keep you posted on my progress! Angela

Great news, Persephone! I'm walking, too, on this side of the Atlantic! Still a little chilly for a bike here, but when spring arrives I plan to start up! Good luck on this next term! Angela

Wonderful news, Ling! I'm so happy for you. Hang in there! Angela

Merry Christmas! Angela