Eillyre

Dear Amy, I truly am so sorry to hear how hard this is for you. There were times when I asked myself if it was all in my head, too (that thought never lasted long, though ? I knew it was balderdash! If there had been even a glimmer of possibility that I could work or wish my way to health, I would have been up and about long ago! ). I tried to keep running and taking classes and living my normal lifestyle?but eventually had to accept that there was something most definitely wrong and that fighting against it only made things worse. It IS hard, especially at the beginning where you are?it?s only natural for you to want to be healthy or to have something easy to fix. But pondering it will not help if you do have POTS?it will only prolong your pain. Perhaps in my last post I dwelled too much on some of the difficulties of POTS. If that?s how you read it, I?m very sorry and would like to repair that impression I left. POTS is not a dire life sentence. It may sound it sometimes from our posts, but I would encourage you to consider a few points when reading on our forum: 1) Most of the people who feel the need to contribute to the forum are not the ones who have been able to get POTS under control and go on to live relatively normal lives. There are those whose POTS symptoms clear up on medication ? I suspect that most of them would rather spend their time working on research papers, hiking, or whatever else they are now able to do than posting on our forum (if they ever made it onto our forum in the first place ? we are do not encompass the entire POTS population). Dr. Low (from Mayo) has a son who has recovered to almost full health. My doctor at UPenn had some POTS patients who came close to full recovery and led very ?normal? lives. Not everyone does recover all the way, and there is a small population that sees little or no improvement on medication, but that doesn?t mean that you have NO hope for improvement. On the contrary, once you find a POTS specialist and try treatments, you may well see some degree of improvement. 2) Many of us have more than just POTS. POTS is not always the major culprit, but a very unfortunate and intrusive sidekick. Not everyone?s muscle pains, vomiting, etc. has its roots in POTS ? some have EDS, CVS, MVP, CFS, etc. My POTS symptoms are not at all a major hindrance anymore; if I didn?t have chronic fatigue syndrome in addition to POTS, I would be back dancing a little and start college. 3) DINET is a Dysautonomia Information Network, which has a primary purpose of helping people with questions pertaining to dysautonomia. The fact that the majority of our posts have to do with health problems, new symptoms, outrageous doctor experiences, and depression/disappointment does not mean that we have no bright spots in our lives. Most people will post about that because that?s what they need other people?s help with. I don?t usually post about all of my good days or about what I was able to accomplish each day because I don?t want to clutter up the site. If we all posted the positive aspects of each of our days, the cries for help with symptoms would be lost. Some of us will give occasional ?HOORAY? posts, but they shouldn?t be read as the only ?HOORAY? moments we have. Please try not to take the medical posts as the sole indication of the quality of our lives. That said, you still feel wretched and need something done about it. You aren?t sure if POTS is the only contributing condition and are having trouble finding doctors who are willing to take care of you. Well, I would highly recommend that you find a dysautonomia research center with people who see this day in and day out. They can do highly specialized testing to help determine whether POTS is the sole culprit or if there are some other things that need to be addressed. You were concerned about the distance Mayo was from home, but if things nearer to you are not helpful (as was my case), you may want to reconsider trying there or somewhere in Illinois (I don?t know anything about any of their facilities ? just saw that there are some places on the DINET physicians list). The trip does take a lot out of you , but if you end up with a better understanding of what?s wrong and possibly a treatment regimen, it may be worth it? The forum members have had a mixed experience at Mayo (as with most other places). For me, it was the turning point in my illness. I was able to get special testing to confirm the initial POTS diagnosis I received at UPenn, as well as speak at length with Dr. Low about ALL my concerns. I ended up with a medication that has my POTS for the most part under control and something to help with the CFS side of things, although I may see a specialist about that, too. It was a thoroughly satisfying and positive experience, despite the travel-related fatigue, and I would highly recommend it. Insurance even paid for almost 1/3 of it. Others have had positive experiences there also. (I mention Mayo first, because I?ve actually been there and I think it?s closer than Dr. Grubb, who has also received good reviews). Not everyone has found the trip useful, though (keep in mind, I think most of them saw people other than Dr. Low and his group). In any situation in which you have multiple cases (some of them extraordinarily difficult), multiple personalities, and multiple doctors involved, there will be a variety of outcomes. You just have to weigh it all to decide if you think it?s worth a try, knowing full well that they may not know how to treat you. Doctors are not superhuman ? they have their limits, just as we do. They are not under an obligation to us to know more than is possible at this time. Sometimes we forget just how much they do know in our disappointment at not getting a cure. We must be more fair with them in that respect and prepared to receive disappointment IF it comes. I went through four physicians before getting an effective treatment program at Mayo. I would at least give Mayo or another research facility a little more thought before discarding it, considering your present course is not bringing much improvement. If you do decide to go in that direction, there are a variety of posts about getting your records together, etc. that can be very helpful. I?d be happy to PM you more information, too. Finally, I tend to approach health problems very methodically ? ?this is what?s wrong, what can be done to find a solution?? ? but I don?t want you to feel like I?m dismissing your feelings. I do understand how cruel, crushing, and disheartening chronic illness can be. I?m still living with it and may well for the rest of my life. I will very likely never get a chance to dance Swan Lake or many other things I worked so hard and wanted so much to ? yet another dancer that never made it big. The closest I may ever get to Tahiti and Australia and Egypt might be on the ?internet trips? I take and in the books I read. I may always have trouble getting through the day without taking rest breaks every twenty minutes or so. It?s very real and at times very painful. Yesterday I was feeling very restless and wishing so much to be anywhere other than sitting at home, doing anything other than reading a little and typing a little and feeling very tired. I wanted to feel 21, not 91. Your feelings are very real and not always rational. In your own time and your own way, you?ll learn to acknowledge them and move on, the way we all have to. Don?t neglect learning that process, though. You don?t want to be a slave of denial any longer than possible. The sooner you come to terms with the way things are, the longer you will enjoy the many blessings your life does hold ? with or without POTS. It?s not just a lesson for the sick ? it?s a universal truth of life. I wish you the best of luck in this, dear friend. It is hard, but you can win over it. With love, Angela

Just wanted to add my little welcome too, Chrissy! Looking forward to hearing about your college experiences! I'm so happy that they've been so accomodating! I hope your move goes smoothly and that you settle in to things without much trouble! Keep us posted on how you're doing! Angela

Dear Sallyann, Thank you for trusting us enough to share your concerns. You are most definately not whining! You are expressing a concern and asking for help -- that's one of the reasons we're all here, so we can all do that. I used to have major problems at night, too! I absolutely loathed going to bed -- I always had excruciating body aches, my HR would elevate sometimes, I would get severe chest pains, sometimes I couldn't breathe and was unable to move my arms or legs or make a sound for help. For six months, each night was a nightmare of agony. It all changed once I started the Melatonin Dr. Low prescribed (not to urge you to get that too; I just wanted to explain why I'm not sleeping the same way now.); at this point I only have nights like that (of lower intensity) after I've really worn myself out. My dad elevated the head of my bed about 3-4 inches (went up gradually) by putting blocks of wood under the posts. He's done that to his own bed for years due to acid reflux. If you make sure that the blocks have enough surface area, the posts don't fall off. If the block idea is too scary, you could use a long plank of wood. The elevated head is not an answer for everyone, but if you're interested in trying it, this is a pretty easy, safe, and inexpensive way to do it. I second corina's last post. I do not share all of the details of my problems with my family, but I do a majority of them. It helps them cope with my illness better, too. It doesn't scare my brothers now when I've collapsed on the floor because they understand why it happens and that when I'm ready, I'll get back up again. It's just part of life. Whenever I curl up in my room partway through the day, my parents know that I'm just in a lot of pain -- they see if there's anything they can do, but if not, they don't have any reason to worry because I've explained it to them before. My mom and sister, in particular, have appreciated that I haven't totally clammed up about how I feel -- they can usually see it in my eyes when I'm really suffering, and it hurts them more if I leave it to their imaginations to wonder what's wrong. I also never wanted to get into a situation in which I ended up at the ER and no one was able to explain to the medical staff what was wrong with me, what would make me worse, what helps alleviate pain, etc. I'm afraid I don't have any worthwhile medical advice to contribute, but I did want to make sure that you felt more comfortable about sharing your experience with us. We're here to listen, love, and help you through as best we can. Angela

Thanks Kristen! I love to write & am happy to channel it towards a worthwhile cause. I've always wanted to make a difference in this world helping people who hurt; POTS has sidelined me a little from actively doing so, although I still consider it an invaluable experience. I've grown and matured so much over this time of being sick; I'll emerge a far stronger and compassionate person than before! It'll be a while before I'm really out in the world again (I think my dreams of world travel are a ways down the line! ), but until then, I'm glad I'm making even a small difference! I actually have been considering a little booklet about learning to adjust to a POTSy life; maybe a fall project? Thanks for the encouragement! Angela

I have more trouble typing, too. I always re-check my work at least 3 times and still mistakes get through! It was never like this before POTS. Pre-mestinon, I had a lot of trouble carrying on conversations. The words would get jumbled up (i could actually see all the syllables floating around in my head like little dandelion fluffs ) or completely evaporate before I could process them. I felt like it was one of those "bop the gopher" arcade games -- try to get the word figured out before it disappears! It's not nearly as bad now on meds. Did/do any of you have trouble with this, too? Angela

Welcome Amy! I?m so sorry that you?ve had to join our ranks, but I?m glad that you found us. I hope we?ll be able to help answer your questions and give you some support. For many of us, POTS is certainly very disruptive to our lifestyles. I can sympathize with your frustration at not being able to take part in sports. I?ve been an athlete all my life (soccer, track, dancing, etc.) and very active outdoors. At the onset of my POTS & CFS symptoms, I was living independently in NYC and just starting my career as a professional ballet dancer. The severity of my POTS-CFS combination forced me out of dance after a six month struggle, took me back to my parents home, and left me practically bedridden for most of the past year and a half ? I?ve only just begun to improve in the last two months on some new medications. It was crushing to have to abandon dance ? I loved it so very much ? but even more so to have my strong, highly-disciplined body now so incapable of even the getting out of bed normally. It was very difficult learning to ask people for help getting food prepared, helping me off the floor and back to the couch when I was too dizzy to get their unaided, repeat their sentences when my brain was getting them all scrambled ?the list goes on! Unlike so many on the forum, I received an initial diagnosis of POTS after only 6 months, which was then confirmed 6 months later (this past April) out at Mayo. Not knowing what I had was extremely frustrating, especially as I was trying to explain to teachers and directors why I was out of class, in the hospital, and dancing with Holter monitor leads on my chest! While my performance did not visibly suffer, except occasionally in rehearsals, it took extreme effort to try to hide my symptoms and infuriated me that I had so much difficulty trying to keep up. Once I did get the initial diagnosis, I had the compensation of a name with which to identify my problem, but unfortunately not much research to help me find solutions. My electrophysiologist at UPenn and local neurologist knew what POTS was, but didn?t feel qualified to handle my care ? the rest of my doctors had never heard of it. My trip to Mayo was a turning point for my health and I?m now enjoying some modest improvements in quality of life ? far from cured, but certainly more active (can even take a shower again!). I?m glad you?ve gotten a positive diagnosis, and hope that you?ll find some effective treatment options soon! It?s a step in the right direction! As for learning to live with POTS, yes, it?s tough and requires careful analysis, trial and error, and above all patience. It?s certainly manageable, though, and eventually will become more natural. If you?ve spent much time reading our posts, you?ve probably caught on to my habit of making long posts , but I like to be thorough on topics that really speak to me (and that I can actually add something useful to!), so you can chalk this one up on my record, too. Thoughts from my struggles: 1) Learn as much about your condition as possible. As most physicians have never even heard of POTS, it?s best if you become as expert on the subject as possible (which you apparently seem to be in the process of doing). I found DINET?s webpages helpful, as was the information on http://www.pediatricnetwork.org/medical/OI/johnshopkins.htm . It should be very beneficial as you learn how to adjust for your symptoms, as well as try to explain the syndrome to other people. If your doctor is teachable, you might print up quality information (DINET has an info mailer) to invest in more informed care. You may even, with doctor supervision, find some new treatment options he never knew about. 2) Be prepared for daily, hourly, minute-by-minute change. POTS requires some flexibility; your symptoms will not always be the same, at the same time, in the same intensity. Rather than dwell on the frustration of this irregularity, be prepared for and forgiving of it. I approach it as I did finding my balance each day when I was dancing: it won?t be the same, so I simply have to be more adept at changing with it. It?s not drudgery ? it?s a fact of life. 3) Learn your triggers. If you are aware what exacerbates your symptoms, you?ll be able to prevent more of them. If reaching overhead or using your arms brings on lightheadedness, avoid it as much as possible. If warm showers bother you, take lukewarm ones or even baths if that helps. Analyze situations; do you know what components wear you down? For me, I know that a grocery shopping trip will be far more taxing than a morning walk around the block because it has more elements that tire me out (walking, pushing, decision-making/concentration, background conversations, standing in line, and lifting VS. just quietly walking). That means that I need to take measures to minimize those components. I go when there won?t be many other shoppers (minimizes noise and line length), have a list prepared (cut down on time spent walking and concentrating on decisions), and go twice a week (shorter length of each trip, less to carry & lift, as well as less to put away at home when I?ll be tired). Be creative ? awe yourself with your cleverness! If standing up is taxing for you, keep a folding chair tucked away in the kitchen so that you can sit in between stirring things on the stove. If your head gets too tired while eating a meal, sit in a place where you have room to put it down or rest it on the chair next to you. 4) Listen to your body. As an athlete, you?re probably more used to this than the average person. It will communicate to you, in its own ?cunning? ways , what you should and shouldn?t do. If you have trouble reaching down to get laundry out of the hamper, have your son do it for you. At this point, I CAN do more than I SHOULD. If you it takes you a week to recover from walking around the block (as was the case for me), probably you should choose something else to get exercise ? or even rely on leg exercises and daily chores for your exercise if ?formal? exercise is too much at the moment. Once you?re able to get the symptoms under better regulation, you may be able to add in a little more activity gradually. Remember, even just walking around the house or picking up toys is exercise. Don?t be ashamed of needing to rest often ? it can be frustrating, but is very necessary. I find that I have less down days if I make sure to rest as often as I need to and don?t totally wear myself out. Enjoy a movie or time looking at a picture book with your son, or if you?re too tired for that, lie down and listen to some soothing music for a while. I always keep my iPod next to my bed. 5) Prioritize your energy. Fatigue is a huge source of frustration , but is nevertheless a part of my life, so I have to make the best of it. There is far more that I?d like to do than I have the energy for, so I have to prioritize it much as business people have to prioritize their time. If you have only enough energy to either walk around the block or to make dinner, choose which is more important and do it fully. Once you?ve made your decision, don?t fret over the one that you didn?t do. Take a rest after doing the first and see if you have energy later to do the other. Either way, you have exerted yourself and accomplished something. For general housekeeping (which can be difficult to stay on top of), try to operate on the rule 5 minute rule. If you had only 5 minutes to clean the room, what changes would make the most impact? Stand at the main point of entry and see what most obviously makes the place look untidy. Skip dusting the corners and opt to pick up the toys strewn about the floor. If there?s a corner that you just don?t have any energy to de-clutter , get it to look as small and unobtrusive as possible, then put a candle somewhere else that looks nice (I?ve gotten away with a lot this way! ). Everyone is drawn to the candle area, not noticing the clutter as much. Use your creativity! If you only have the energy for a low-prep meal, make it look special (colorful veggies can make a big difference ? bagged baby carrots in a pretty dish takes very little effort!). Keep a pretty tablecloth on the table to give a low-energy visual boost. 6) Build support. Educate your family and friends on your condition, triggers, what helps you feel better, etc. Be honest about your limitations; if you try to make everything seem rosy, they?ll have hard time understanding why you live the way you do. Accept their help when you need it (that was a tough one for me to learn ? I?ve always been very self-sufficient); it will not only save you energy, but will help them to feel like they are making a real contribution. Don?t cheat them of that pleasure. For those people who still seem to not understand, indicate that you have a heart problem (people tend to respond better to that then the elusive autonomic system details) that has required some changes in your life. Do not waste time feeling guilty about not being able to live at the pace they expect you to; it?s simply not worth the emotional and physical drain. Keep your son involved. Explain that your heart is sick (or something more age-appropriate if he?s older!), which means that sometimes you will be tired by little things and need to rest more often than other people. Have him help you with your difficulties and thank him for his kindness. Take time to spend quality time with him (playing, reading, talking, listening, etc.); make a game out of cleaning the house together, listen to books on tape together when you need to rest, etc. He will develop compassion and loving devotion as he lives through your rough spots with you, which will help him through the rest of his life. In our family of seven, illness or injury were a part of our lives ? malaria, snakebites, scorpion stings, blister beetles, heat rash, salmonella, colds, ear infections, flu, broken bones, MVP, ulcerative colitis?all sorts of things. While most of them were not chronic, there were times it seemed never-ending, but we learned so much as children from it and can look back on extremely joyful childhoods despite it. Mom was sick more than we were; her limitations were very evident. She would try to read a story while her malaria fever of 105 caused the book to shake (?Mommy, I can?t see the pictures!?), we had to take care of her and the house when she nearly died from a viper bite, she was too tired to pick up her spoon to eat with Lyme disease (she was very thankful that I could understand how she felt!), etc. But we knew her struggles, and loved her all the more through them. 7) Don?t let POTS control you ? live fully! While you do have POTS-imposed changes, you are no less a person because of them. I do have POTS and CFS, but do not see them as part of my identity. I?m not able to dance, but I?m still full of joy. Even when I was almost bed-ridden, completely sleep deprived, and suffered from an aching body, I could still laugh, make jokes about my collapsing on the floor, and live a life of contentment. When I haven?t been able to go to my sister?s apartment or go out with her, I invite her over for a movie or time to chat, etc. Find creative ways to keep in touch with people. Find ways to cheer and beautify the lives of people around you! If you spend your time pondering what you wish you could still do, you?ll miss the joys within reach. Yes, there are times of disappointment, frustration, sadness, guilt, or even envy, but don?t let them get the best of you. Acknowledge your feelings, talk them out (even if it?s to yourself), and then move on. Suppressing them will only incubate your grief, giving in will only drown you in misery. Don?t indulge in bitterness, crabbiness, or resentment (you are still responsible for your behaviour) -- they will destroy you and your family. Embrace the hope and joys that can be found ? there are a multitude of them! Revel in the beauties of life ? for you and people around you! ~~~~~~~~ Right now you?re at what I found to be one of the hardest points of being sick ? you haven?t found an effective treatment yet and haven?t had enough time to really understand how to best live with POTS. Over time, if you invest yourself into learning how your body operates, you?ll find it easier to know how to navigate around your symptoms. You?ll still have to make adjustments throughout the day, but on the whole, it won?t be as difficult to determine. Will there be more good days? Well, it?s hard to say. If you can find treatments that help, you probably will. The bad days/times are inevitable, I think ? but then, healthy people have them, too. Remember, there is no ?quick fix? or ?sure-fire? remedy to this process; it takes a daily commitment and a number of poor choices along the way, but step by step, you?ll make it closer. I?m still at it and probably will be for the rest of my life! Don?t worry about being a bad person for wanting to do more ? it?s only natural after leading a relatively healthy life. There?s nothing wrong with wanting and trying to broaden your range (within reason) ? in fact, it will help you not get stuck in the rut of imposing unnecessary limits on yourself. I spend every day trying to do more! The problem arises when you let yourself get sucked into dwelling on your limitations. Avoid things that make you sad or concentrate on what you?re not doing anymore; I didn?t go to see Nutcracker this past winter and it?s taken me over a year to be able to watch dance on video again ? it still hurts, but is getting easier bit by bit. Think about what you CAN do, what you can do now that you couldn?t before POTS, what you?re thankful for. I would never have found all of you on the forum, or have deeply understood just how much people with chronic illnesses can suffer. I would have missed out on extra time with my family and I wouldn?t have had the time to pick up the new hobbies I have?. If nothing else, I've gotten a pretty decent medical education without the long hours of med school! Celebrate the little steps that you make as you go along! I hope this post doesn?t come across as life being plodding or toilsome; you?re not a prisoner by any means! When a surprising boost of energy or opportunity comes along, enjoy them to the fullest! Once in a while, I?ll sacrifice the next three days worth of energy to do something special ? and I don?t regret it a bit! Enjoy the little pleasures! Live patiently and joyfully from the floor, hospital, couch, bed?anywhere and everywhere! I wish you luck on your new quest. Ask all of the questions you want! Feel free to PM me anytime you need to talk! Angela P.S. ? You might try reading Evie?s post on ?The ?I am sick? mentality,? too ? there were some good replies.

I'm currently on Mestinon, Melatonin, and NeuroHelp supplements. I consume huge amounts of salt (1/4 tsp at a time) with lots of fluids, too. I have previously taken, among many other non-POTS related things, Florinef and Midodrine.

Welcome to the family, Sally Ann! I'm so glad you've both found our discussions helpful! Thanks for introducing yourself! Angela

Welcome Jennifer! I'm so happy that you were able to find us! Before I was diagnosed with POTS at UPenn, I was seeing a cardiologist about the racing heart, too, although it sounds like yours were more prolonged and frequent than mine. I don't have anything sound to add in regard to your questions about possible heart damage (I didn't have any) or the HR issue, except that I would try to maintain as best quality of life as possible. I don't see a problem with HR 110 dusting if you feel fine; my line is usually "listen to your body" -- in general, if you feel odd, resolve the problem, but if not, continue on your merry way! I'm not a physician, though, and have never had to worry about high heart rate, so better to talk it out with people who are better informed. In the early POTS stages my resting HR was 37 (shocked the Tilt Table Test technicians! ); even in testing at Mayo it didn't get astoundingly high, but was elevated significantly enough to merit the POTS diagnosis. Ernie gave a good general description of Florinef, but if you're interested in more minute detail, you could always search it on the web. As for symptoms, everyone is different. I'm happy all you've been having trouble with is the increased HR -- I sincerely hope that will last! For most of us on the forum, a plethora of symptoms accompanies POTS/dysautonomia variants-- we're able to boast a very wacky collection! If you're interested in knowing some of the more common ones, POTS Place has a good list. Welcome again! I'm glad you've been able to find a diagnosis and hope that you'll be able to get into an effective treatment regimen soon! Ask all the questions you want! Angela

Ernie, I'm so happy that my little tome was helpful to you! By all means, print it and read it as often as is uplifting! I'm glad to be able to add something worthwhile! Evie, I understand the trouble with going to bed early. It never helped me either! Glad to hear that you're taking some steps in the right direction and seeing positive results. Isn't it wonderful to be able to exercise a little again?! I wanted to jump for joy the first day I was able to go around the block, and that was after my going down the driveway victory! What a glorious feeling! And up at 9:30 -- hail the conquering hero!!! Keep up the good work! Let us know how things progress! Angela

Dear Evie, Thank you for having the courage to bring this up -- it's an issue that speaks to many of us here on the forum. Like Ernie, I tend to overdo things. I've always had very high expectations of myself and "pushed through the pain" on many occassions prior to and after developing POTS and CFS. Unfortunately, that has not always been the wisest tack and proved particularly harmful regarding POTS syptoms. I've learned that just as I had to adjust for changes in balance each day as a dancer, I must tailor my activities to my daily medical needs/limitations. However, even though I tend to over-exert myself, I've still had to deal with the issue of knowing how much is being safe and how much is just being afraid to do more. I don't want to get sucked into a "sick person" mentality either. There have been many times over the past year and a half that I've had to ask myself if that's why I was doing so little. Was I really just lazy and using (or subconsciously making up) symptoms as an excuse to do less? Of course, knowing myself, that's an absolutely absurd idea. I didn't gash my leg fainting on top of the trash cans as a more favourable alternative to dancing my heart out in NYC! No, I'm definately sick and have some limitations that come along with it. I do not consider myself a sick person, though -- in other words, I have never made that part of my identity or the way that I think about myself. That has helped to avoid the "I am sick" mentality, I'm sure. I've always been very active and determined and I still see myself as such, which helps to spur me onward through each day's struggles. For me it's not a question of if I want to try something -- it's a question of how wise it would be for me to attempt it. The cardiologist who was handling my case at its beginning could not seem to fathom why I eventually stopped dancing after a six month struggle to keep up in my classes. I had collapsed at my parents home one weekend (after many dangerous and scary situations in the city caused by POTS symptoms), barely able to get out of bed. I was very POTSy and it was a tremendous effort just to get to the cardio's office, where after hearing me describe all of this in far greater detail, told me that she wanted me walking a mile each day, swimming, and doing any other form of exercise because I "would get deconditioned" settling for such a laid back approach to handling the symptoms. So I tried it, and sank further still. I gave up, collapsing each day in exhaustion. It was VERY poor advice! You are the best judge of what you can handle. To overcome the mental barriers, the best I can say is to wake up every day committed to living life as fully as possible. You may have an illness, but you are still a vibrant and determined person! As for the physical barriers you are going to try to wear down a little, I'd like to share some things I would suggest from my own experience: 1) Avoid those activities that will be more stressful to your particular case (e.g climbing stairs, jogging). I have trouble doing things with my arms for extended amounts of times, so I leave washing the shower walls & mopping the bathroom floor to one of my brothers while I do the sink and toilet. Similarly, when putting away groceries, I leave the things that go under the sink or on high shelves to my mom, to decrease the amount of bending or reaching I have to do (I'm still wary of standing on a chair! ). If one long grocery shopping trip is too much for you, how about two small trips during the week? 2) Avoid environments that will exacerbate your symptoms. I only walk in the morning when it's cool and quiet, as heat and noise tire me out much faster. Likewise, I shop when the number of customers is at a minimum to avoid long lines, noise, and confusion (even the extra background conversations contribute to wearing me out ). 3) Pace yourself carefully. It's great to try to add extra activities, but make sure that your choices are wise ones. Pay close attention to how your body handles it. For example, when you try to walk, are you just tired at the end because you haven't done it for so long or have you tried to do too much? Two weeks ago, I started walking around the block again and, in my zeal, walked a mile each morning -- after the fifth day my symptoms really flared up and I spent most of the next week lying weakly on the couch with severe fatigue, brain fog, and a lot of lightheadedness. This week I felt better again, so I've started walking only 1/2 mile two consecutive mornings, resting a day, then walking another two mornings. Better to start small and work up -- even if it means just walking down your driveway and back up. Remember, the exercise is meant to improve the quality of your life -- don't fall into the "more is better" myth. You completely undo whatever small benefit the activity provides if you spend even more time recuperating from it! 4) Try keeping a list. Are you a person for whom a list of the days activities might be beneficial? I use mine more as guidelines to help keep me focused and encouraged when I see everything that I've been able to cross off. I would start with a small list -- a long list of things that you weren't able to do can be somewhat dismaying! Again, like most of the rest of my life, this list is very flexible -- if I get most of it finished, it's something to rejoice over, but if I can't manage everything that day I'm not crushed. 5) Be accomodating in your sleep. Being a natural "night owl" as many in my family are, I understand your trepidation regarding changing your sleeping pattern. It can be very daunting at first, but is not impossible. Thankfully, I was able to re-set my body clock before I developed POTS, so I haven't had to deal with that on top of everything else. I try to keep a reasonable schedule for myself: usually up around 6:00-7:00, don't spend the morning in pajamas, don't spend the day in bed (on the couch perhaps, but not in bed ), etc. However, as with my lists, I make sure I give myself some flexibility in this area. I'm not sure about you, but I have had tremendous sleeping difficulties since getting sick which are gradually resolving, but still not nearly what you'd call normal. I can survive and get through a day cheerfully on two hours of sleep, but extended periods of inadequate sleep really kills the rest of my health. For that reason, if I have a bad night and feel I need more sleep to have a more productive day, I will sleep in. Some days, I do get up early but need to take a nap later (I try to avoid this as naps generally make it harder for me to sleep later). I guess my point is, definately try to get yourself into the habit of consitantly waking up early (do you have anyone who can hold you accountable to your alarm? ), but listen to what your body needs. 6) Try finding a buddy. Can you find someone who is patient enough to try activity with you (walking, stretching, Pilates, swimming, etc.)? I know a number of people who find it easier to do things if they someone to share the experience -- I didn't know if laughing with a good friend while you walk might help you forget your fears. Personally, I have not found this to be profitable at this point in time -- everyday is different for me; a lot of people would find it difficult to accomodate the variations in schedule (I don't alway walk at the same time each day, I can't always keep the schedule I intended based on changes in my health, etc.). Having been a very self-disciplined athlete my entire life, I'm able to keep myself motivated and understand the importance of working around my daily limitations, so it's worked better for me "going solo." If I get to the point when I can do things on a more consistant level, a buddy or group Pilates class would be fun. 7) Be patient with yourself. Don't let youself or others bully you into more than you can handle. It will take time to learn your limitations -- you will probably overdo and underdo at some points. It will take time to get over your fears, or at least get them to the point where they won't be a hindrance. You will not always wake up before 9:00am. Don't dwell on those times -- it's all part of the learning process. Don't force yourself to match what other people with or without POTS can do or think you should be able to do (that's tough for me -- I've always been very competative! ) -- we're all different. Try things and learn from the experience -- it's really quite exciting! You must be patient with yourself, though, just as you have to be with anyone learning something new. But learn you will if you work at it wisely each day! That leads to my last point. 8) Celebrate your victories! As you are able to achieve things that have been difficult for you, congratulate yourself or host a little private celebration (I treated my mom to tea in the backyard one day! ). There have been days that I had to give myself a running pep talk to get me through small activities such as getting out of bed, but it helped to encourage me and affirm even seemingly small victories. Share your progress with family members if they are likely to be supportive -- my dad enjoys getting my report each day when he comes home from work. Remember that your joy is not tied up in your physical capabilities or limitations. You choose how you respond to a situation, so why not make each day as bright and beautiful as possible for youself and the others around you! I'm more joyful lying on the couch than a lot of the healthier people I've seen! Sorry to write such an epic post! I wish you luck in your new endeavours, as I'm working on mine here, too! Hope this was of some help and didn't cause too much brain fog to roll in! With love and sympathetic support, Angela

Welcome to the family, Tracy! Glad you found us! I hope we can be of some help and encouragement! Ask as many questions as you want -- we all do! Angela

Sorry to hear you're having sleep trouble too, Melissa. I've been taking Melatonin since April and have noticed a tremendous difference in my sleep because of it -- I still don't sleep well, but so much better than before(my welcome to Evie gives my night time drama more detail!). It didn't help me fall asleep faster, but I was able to get more sleep that was actually refreshing and actually woke up less frequently. The difference was clear from the first night I took it and has continued to improve (a little up and down, but still better in general) since then. If I'm overtired, I don't find it as effective. I take 3mg each night at approximately the same time (about an hour before I go to sleep because, as Radha said, it's not particularly fast-acting), give or take 20 minutes -- if you're taking it long-term, taking it around the same time each night is supposed to make it more effective because the melatonin is working on improving your sleep cycles. If you can find one brand that works well and stick to it, your chances of effectiveness are improved. Apparently, in Europe Melatonin is much better regulated than in the US, where the amount of melatonin in the pills is not always consistant from brand to brand. Something like that. So if you hop from brand to brand the body supposedly does not receive consistant amounts. Nina, I've met a number of people who took Melatonin at a higher dose (e.g. 3mg)who also experienced very vivid dreams. They all said that when they started taking a lower dose, the dreams disappeared. I haven't any personal experience with that, but it seemed to come up consistantly. Just a thought. Or maybe it is a "Clash of the Serotonins" like you said.

I won't reiterate what everyone else has mentioned already, except that all of the research that I've done has considered POTS and CFS as frequently overlapping, but not necessarily always. Not everyone with CFS has POTS, and not everyone with POTS has CFS (very possibly have fatigue, but not necessarily the syndrome). Dr. Low said that in my particular case the POTS symptoms would probably be easier to treat than the CFS symptoms (especially because doctors still know so little about the syndrome). Although the Mestinon might lessen some of the CFS symptoms, it probably would not really resolve them because the two conditions are not by any means identical. Many of the precautions (fluids, sodium, etc.) do indeed help both, though. Evie, to give you the non-technical version , a blood pressure cuff is a length of thick, layered fabric that wraps around your upper arm. A long, narrow tube connects it to a small hollow, egg-shaped rubber ball which you hold in your hand. As you squeeze the little ball, the cuff begins to constrict your arm. You pump the cuff to an appropriate tightness and then watch the little gauge above the rubber ball to determine what your blood pressure is doing. Frequently in hospitals they check your pulse around the same time. Do you know any medical people who might be able to lend you one and supervise until you can do it accurately yourself? Angela

Hi Evie! Glad to finally meet you -- I had noticed your posts a number of times the last few days, but didn't know when you'd joined! I'm a CFS & POTS combo myself. Like you, mornings were the worst time for me. I felt very achy and couldn't get out of bed very well without crumpling to the floor or falling back on the bed to avoid the floor. Nice to have an alternative -- keep my options open, you know! Anyhow, I found, just as you did, that slowly progressing up to getting out of bed was the best answer. I was getting up 1-3 hours earlier than my normal wake-up time and would start to inch my way up to sitting, starting to get my arms & legs moving a little, too. Once I was out of bed, I would get so lightheaded walking to the bathroom that I'd lie down on the floor to avoid completely fainting. It took me many sit down or lying down rest breaks to eventually get my breakfast prepared (became good friends with the kitchen floor!) and out to the dining room table. Then I'd have to rest before, during, and after eating -- my spoon just felt SO heavy. My family got used to seeing me stare at it, as if willing it to teleport up to my mouth on its own. I'd stumble over to the couch and spend some time there resting and eventually get around to brushing my teeth, hair, etc. I usually started to perk up around 11am, too, but the rest of the day was not significantly better than my mornings. All of that changed once I was able to get up to high enough doses of Mestinon & neurohelp supplements. Now I can usually wake up and pop right out of bed; I was even able to start walking around the block this week! I was also having major sleeping problems, usually able to sleep unrefreshingly for 2-5 hourse a night, waking up many times in between with agonizing body aches. I was always freezing cold (night & day), so layered pajamas, quilts, and electric blanket were musts. 3mg of Melatonin each night seemed to do the trick on my sleeping. The first night I tried it I was able to get 6 hours of refreshing sleep, waking up three times without any pain. It's gradually improved to the point that I can usually get 8-9 hours of refreshing sleep with 2-3 brief awakenings. I only start to get little twinges of those aches if I've really worn myself out that day. I wouldn't say that my sleep is good, but tremendously better than before -- it's helped clear up some of the symptoms like always feeling cold, too. I also like that it's relatively natural & non-habit forming; nights that I have not taken it my sleep is usually worse, but I don't have withdrawal symptoms or anything like that. My trusty iPod still stays right by my bed, so I can listen to soothing music when I have trouble sleeping -- I figure if I at least rest quietly for a number of hours, it's better for my brain than trying to be up doing something. Along the lines of medical alert jewelry, I opted for a necklace pendant over a bracelet because I could fit more info on it. Mine has two sliding discs that can be opened up -- red medical alert symbol on front with three faces for writing (I think you can get them with more dics if you want). It the time, mine needed to say "partial complex seizures" and "bizarre migraines -- NO imitrex", but now that I'm starting to be up walking, I'm going to get another pendant to add on my little chain for CFS and Postural Orthostatic Tachycardia Syndrome (no one seems to understand the initials) -- Mestinon. I always keep a contact phone number in my pocket -- our area code has changed enough over the years I didn't see the point in engraving it on the pendant. Thankfully, I've never had any occasion for someone to have to use the medi-alert information, but I do like to have it as a precaution. I was living in NYC, so my dad insisted on it. After working in NYC emergency rooms himself, he said that the staff would contribute my strange migraine symptoms to drugs or alcohol (unless they had a medi-alert stating otherwise), so I'd get very poor care. Glad to hear that you've been able to get positive diagnoses and are able to function a little better than before. I don't really know about the hypnotism etc. for resetting your body clock, but I hope you find something that works; I had to reset mine living in the city before I got sick, so I was already on a good schedule. Welcome again! Angela

Hey Dizzy! Just thought I?d add a few thoughts to what?s already been said. I, too, at 21, am in the midst of trying to make education decisions, and have run into some of the same issues. As Carmen said, it?s a very personal decision; you have a better idea of what you can handle than anyone else. I think furthering you education is a very wise thing to do. Not only does it make you more ?marketable? in the job realm, it helps develop your character and worldview. It provides exciting new things to think about and discuss with others. So, yes, pursue education by all means. If you truly feel ready to try the business school, go ahead and give it a try; maybe you could handle one course at a time? However, you very wisely expressed concern over some of the cons of that route. Will extra pressures from school deteriorate your already declining health even further? Will the long commute and troublesome facilities wear you out so much that you are unable to concentrate on your studies? Even if you can graduate, will you have just barely scraped through because of health problems and not actually learned enough to function in the business world? They?re all questions I?ve had to ask myself. Others have mentioned excellent ways to try to minimize the problems involved in the business school option. Might any of them help make it possible? Try to determine how best you learn. Do you know how long you can concentrate at a time? Right now my brain works well for about 20-40 minutes at a time; I could never handle 1-2 hour lectures night after night, plus reading texts and writing papers. On-line courses are another very useful way to try to get some college credit without the medical stresses of going to class. If you?re a visual learner and very adept a computer navigation like my sister, it could be just the thing to get you started again. If you?re an auditory learner like one of my brothers, that option might be a struggle depending on the program. However, there are many means of getting an education. I know plenty of people who have had to self-teach themselves who are much better educated than most of the kids coming out of college. Not having an official degree can limit your options in the job market, but if you are not ready to finish pursuing a formal degree yet, there are plenty of things that you can do to prepare for when you are. For myself, college would be an exercise in frustration at the moment. It would completely undo the small gains in health that I?ve been experiencing, leaving me in poorer health and financial situation without much educational gain. I could scrape through probably, but wouldn?t really receive a good education, so until I am able to manage the rigours of a formal college setting reasonably (I?m aiming for Summer or Fall ?06!), I?m preparing myself for it at home. Some things you might try: 1) Review your studies from home. Keep reviewing the material that you?ve been studying if you can, reading the text and reviewing lecture/lab notes. Make up sample problems or situational dilemmas to solve. If you have any friends from class, would any of them be competent enough and willing to discuss what they?re learning with you every so often? Does the library have any resources that would help you keep up? Are there any occasional seminars that you could go to? It?s not at like being at school yourself, but better than nothing while you regain your strength. 2) Read everyday. I read quite a lot of books, or listen to audio versions (or my mom! ) if I can?t process printed text at that time. It helps to develop my vocabulary, grammar, and imagination, reinforcing excellent sentence structure and use of colourful and engaging detail. The more I read, the more my brain learns to process the information faster (although brain fog does slow things a fair bit ), which will be a big help if I end up in college needing to be able to glean information from hundreds of pages of reading each night. It also helps me to ?travel? to places and times I?ve never experienced, as well as stimulate thought. Education is not merely memorizing facts or techniques; it?s a time of learning to inquire, think, and love to learn more. Choose books of quality ? good children?s literature, classic literature, poetry, encyclopedias, dictionaries, thesauri, National Geographic magazine, history books, well-written biographies, instructive books (cooking chemistry, gardening, astronomy, music appreciation, etc.) ? that will help build your intellect, breadth of knowledge, and literary aptitude. Make sure your choices interest you ? that way you?ll have an easier time sticking to it and find it more pleasurable and rewarding. I gave up trying to slog through Hawthorne?s House of Seven Gables, in favour of Baroness Orczy?s Scarlet Pimpernel series. It had just as rich a vocabulary and was infinitely more interesting! 3) Write as much as possible. I?ve made it a point to write or type something each day. Some days it?s two sentences, others two pages. Even though the volume is significantly less than college demands, it helps me to get used to writing something each day which is better than launching into college after writing nothing for many months. Letters or e-mails to friends are a chance to practice richer writing (with someone else who benefits from it too!), as are short book or movie reviews, journal entries, etc. I listen to audio lectures (more about that below), so I?ll sometimes practice writing by summarizing what I learned from one particular segment, which I can later share with my family. Journal entries, no matter how short, are also positive reinforcement of the skill you are developing through your reading. 4) Listen to audio lectures. I?m a great fan of the Teaching Company. They sell lecture series (30-45 minutes per lecture) on a wide range of topics (history, economics, philosophy, anthropology, literature, sciences, mathematics, etc.) taught by some of the best lecturers in universities around the world (Princeton, Harvard, Oxford, UPenn?). Most of the ones that I?ve taken have been very engaging and easy to for the average person to follow along. Although it doesn?t give you college credit, The Teaching Company is certainly a top quality option for supplemental education. Some of my dad?s co-workers at the university have been building up their collections, too, so we lend our copies to each other to save money. The lectures not only build my vocabulary and round out my scope of knowledge, but help me to practice concentrating for longer amounts of time and listening to ?academic? discourse. I can also use it to help gauge my progress in terms of the amount of time I can sit up, focus, etc. [Hint: Only buy a series if it?s on sale; every series goes on sale at least once a year, at which time they mass produce hordes of that particular series so that everyone can buy them at the lowest price possible.] 5) Talk & listen to people. I don?t advocate an Anne of Green Gables steady stream of chatter, but do find that talking about what I?m learning and thinking about really help to solidify it in my mind. It also helps me to look at other people?s perspectives and opinions, which is one of the great assets of a college education ? the huge community of scholars with whom you can compare and discuss ideas. If you have friends in college, talk about what they?re learning, ask questions, present things that you?re mulling over. My parents don?t have much spare time to study, so they enjoy talking over what I?m learning. Their questions and observations prompt me to think more carefully, as well as improve my ability to relate material in a concise and articulate manner ? qualities very essential in the academic and business world. I enjoy listening to superb actors?/actresses? dialogue and imitating the rich clarity of diction/pronunciation and inflection. What makes you want to listen to them? What makes you believe them? I also observe body language. How do they use facial expression or hand gesture or movement of a shoe to express how they feel? I want to practice those elements that will make me more approachable to co-workers, less intimidating or confusing to classmates. Excellent communication skills are learned and must be practiced. 5) Pick up a new hobby. Whether it?s learning a new language, or sewing a skirt, or designing a garden, it might help to develop better concentration for longer amounts of time, plus give you skills you enjoy that could become useful in your eventual job search. It?s a bumpy road, as Evie said, with lots of stopping and starting along the way. But there is hope! If you pace yourself appropriately for your medical situation, I have no doubt that you?ll be able to continue on the education road. Feel free to PM me if you need to just talk or vent! Best of luck! You?ll be in my prayers! Angela P.S. ? Sorry for the epic post. I have such a bad habit of doing that! Hope something in there was of help!

Welcome Marie! Glad you decided to stop lurking and let us meet you! (like most of the rest of us, I lurked for a couple weeks before introducing myself, too). I'm so happy your MD has been so cooperative and supportive! Keep close to that one!!! I hope that you'll be able to find some effective treatments soon, now that you're finding out what exactly is wrong. I've found that a lot of people are more understanding now that I have "names" for my problems, too. As for the Mestinon/asthma issue, I do have asthma, although it only occurs in mild-intermittant form. I usually have no difficulty with it unless I get a respiratory infection or very intense physical exertion (always took a puff before a demanding performance!). I've had no trouble so far on the Mestinon in that regard, and Dr. Low didn't seem to think I'd have problems in that respect. If you have more severe asthma, it might be more of a problem, but that takes me out of my medical depth! I'll leave it for someone else to comment on! I haven't tried any of the medicine you referred to to counteract the Mestinon side effects, particularly since I haven't really had much in the way of adverse side effects. Sorry I'm not any help there either! I do think the Mestinon is definately worth a try at least. Make sure you stick to the normal precautions to minimize the likelyhood of severe side effects (super low dose that works up gradually over many weeks, food and lots of water when taking, etc.). For the Raynaud's, have you ever tried those little heating packs they sell in ski shops? My mom and a friend (who also has POTS and many complex cardio problems) use them to keep their purple Raynaudized digits warmer. You crack the little cake inside the packet, pop it in gloves or shoes, and have a toasty source of warmth for 6 hours or so. On really bad days, my mom keeps her gloves in her lap at work so she can give her hands a quick warm-up in between typing or answering the phone. They are a little on the pricey side, so she uses them only on really cold days. Hope you see some improvement soon! Welcome aboard once again! Angela

Welcome Patty! I'm so glad that you've finally got a diagnosis from which to make a plan of action -- isn't it a relief to finally have a name for your problem, even if no one you talk to has ever heard of it?! I'm glad that your husband has been so supportive through your health troubles, and that you've been able to find information from our site educational and encouraging to you both. It's been very helpful to me and my family, too. Welcome again, friend. Hope you're able to find additional effective treatments to help you on your way back to better health. Angela

Sorry to be popping in late in the conversations, but I did want to welcome you, Jane! And a fellow Eyre reader, too! -- better and better! Welcome to our ever increasing clan -- I'm glad you found us! Angela P.S. Thanks for the hint on Case! I want to go to college once I'm well enough to handle it, so I always keep my ears (or eyes, in this situation) open for possibilities!

Hi Angie! I've somehow missed you up until now, so it's nice to meet you! I too have had a lot of memory problems, mostly occurring when my BP was very low. I could "miss days," activities, conversations, all sorts of things! It was a bit scary at first, but on my new meds and better BP regulation, I'm experiencing MUCH better memory retention. I don't know anything useful about your daughter's meds, but thought I'd throw in my two cents anyway. I would definately let the doctor in charge of the dysautonomia symptoms know what's going on! Sorry your daughter's going through the whole "psychological disorder" ringer -- hope you'll be able to find some answers soon! Angela

Glad things finally worked out on your move, Melissa! Hope you're slowly recouping from all that activity -- my move from my apartment in NYC to my parents house in NJ was really fatiguing, so I sympathize! Attack all those boxes slowly! When do things start up for you? Do you have a pretty reasonable period of rest before then? Angela

Radha, I'm afraid I haven't the slightest idea who the reputable online counselling serrvices are -- Nina's suggestion sounds good to me! -- but I did want to let you know that I'm thinking of you. I'm so sorry that you're having such a hard struggle, but I'm so proud of you for looking for professional help in dealing with it. Feel free to PM me anytime you need to talk! Angela

I'm so happy you have this opportunity, Ernie!!! I'm glad you decided to take the wheelchair and that your sister is able to accompany you. It sounds like a very good amount of time to really be able to help others understand how and why people with chronic illnesses live the way do! If you have a spare moment, would you mind sharing some more particulars on your presentation: who the audience is made up of, what are the main points of your presentation, what are you going to try to send them away with, etc.? I've been thinking of what I would present about living with dysautonomia if asked, so I'd love to see what you might have thought of that I might have missed. On second thoughts, you just might become our resident lecturer! Once again, I'm thrilled that you have this chance! Keep us posted on how things go! Angela

Welcome to the family Hannah! Glad you found us! I'm happy to hear that Dr. Fealey was able to give you some solid diagnoses from which you can now make a new plan of action. I was just out at Mayo this past April to see Dr. Low (which was very helpful for me, too); Dr. Fealey conducted my sweat test. Hope you can find encouragement and helpful information on our little forum! Welcome again! Angela

Thanks for all of the wisdom that you have imparted to we dysautonomia newbies, Nina! I'm so thankful for your careful dedication to keeping this site safe welcoming for all of us partners in POTS. Thanks again and enjoy your imaginary tickertape parade! Angela P.S. -- Em, how on earth do you keep track of how many posts people read?! It never even occured to me to do that! Just noticed that you just passed 777! Thanks for giving us all something to celebrate!