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I was very happy with Dr. Philip Low. He's a neurologist at Mayo in Rochester, MN. I would go back to him in a heartbeat if I needed help. Dr. Fealey is also at Rochester (at least he was 3 years ago). My contact out there was primarily with Dr. Low, but Dr. Fealey did assist with some of my testing. He seemed very competent and compassionate. Good luck! Angela

Melatonin worked really well for my sleep problems, and as I didn't experience negative side effects I never tried anything else.

I'm so glad you're finally able to get back into something you love! Wonderful news! Angela

Never seen a geneticist myself, but wishing you both a safe and hopefully helpful trip. Angela

That's wonderful news, Morgan! I'm so glad you've finally found someone who takes an active interest in your case. I love the open house drama! I've had plenty of quirky stares from spectators at hospitals, airports, etc. but yours definitely takes the cake! Angela

Hi Bluesky, Along the doctor line, have you checked the list of dysautonomia physician on the POTS Place website to see if any of them are close to your area? You might be able to get good care from one of them at a lower cost that going to Mayo, or if they think you still need to go to a big hospital for further testing, their input/diagnosis would probably increase the likelihood of your being accepted quickly than a nebuluous reference letter from a random cardioologist. Another option might be to check with in-state medical schools or hospitals to see if they are conducting any dysautonomia studies. Some studies will use grant money to help participating patients with financial limitations. You're at a tough stage in the game, but you'll get through it. Jump's comment regarding being specific about your symptoms' impact on your quality of life is right on target. My cardiologists really didn't understand how serious an issue my symptoms were until they realized just how (and how much) the symptoms disabled me. Try to be as specific as you can about what triggers your symptoms, what makes them worse, and what appears to help reduce them, too. Any specialists you might end up seeing will appreciate that information. I've found that many appreciate a brief written narrative detailing the progression of your illness. It basically goes over: 1) your ability to function before onset of symptoms 2) when and how the syptoms began to present themselves, to what degree they affected your daily life, if anything made the symptoms worse or better, etc. 3) what medical testing/intervention you tried (if any) 4) how your condition progressed (essentially a continuation of #2) 5) what your situation is now, explicitly detailing your symptoms from most disabling to least disabling, how specifically they have impacted your daily life (e.g. what you can or cannot do), what makes the symptoms better or worse, etc. That way the doctors (if they have open, inquiring minds) can get a full, detailed picture of your situation. I can still see where Dr. Low (at Mayo) drew circles, arrows, and notes to himself on the copy I sent to him. It was my dad's idea; he's a physician also, and said that he wished more of his patients did that sort of thing because it's much easier to solve a puzzle when all of the pieces are laid out face up and in logical order. Best of luck in your hunting. Please feel free to PM me if you need to talk, want to ask questions, etc. Glad you found us! Angela

Welcome, Zach! Yes, your story sounds pretty familiar. For most of us, there is no one wonder-pill. Instead, we each have experimented with a variety of treatment options (medicinal and non-medicinal), tucking the ones that worked best into our standard "bag of tricks," so to speak. My physicians and I approached treatment much like a puzzle, starting by addressing the most disabling symptoms. I couldn't sleep (which added more symptoms to my list of problems!), so we worked on finding something that would help me sleep. I couldn't sit or stand without having to drop to the floor to avoid fainting, so we tried to find anything that would help me in that respect...etc...etc.... My cardiologists decided to skip the BB route in my case, too, as my resting HR back then was around 38 (higher now that I'm not in as good physical condition). They originally started me on Florinef to help with sodium retention and had me increase my salt intake considerably (the first cardio said I was dehydrated until I told her just how much I drank in a day). It helped moderately for a couple months, slowing the progression of my symptoms but not solving the problem. After a while, I stopped taking Florinef as it didn't seem to have any benefit significant enough to make the constant migraine-like headache it gave me worthwhile. For many people, however, Florinef has been a very useful tool in their arsenal. We tried Midodrine next, but I soon stopped that, too, as it made me hallucinate and generally live in a constant blur without any perception of time. Again, there are many for whom it's been a wonderful help. For orthostatic issues & heart palpitations, a combination of 180mg of Mestinon per day, high sodium intake (really salt my food and take it raw from the shaker), consistent hydration (water and orange juice), and raising the head of my bed by about 4 inches has worked wonders for me. I avoid hot showers (although I can take warm ones now) and high heat situations, I sit with my feet up when I can to avoid blood pooling in my legs, I do not attempt vigorous exercise before I take my daily dose of Mestinon, and I lie down for a short break on the rare occasions in which I start feeling a bit lightheaded. I've also found it beneficial to keep my muscles toned, especially my calves; even when I was relegated to the couch, I found it helpful to point and flex my feet for short intervals. Not everyone's body can handle Mestinon, but it was a turning point in my illness -- the chest pain, difficulty breathing, and palpitations disappeared with the lightheadedness (and reappeared briefly the two times I forgot my to take my medicine ). The POTS Place website has some other ideas that people have found helpful, such as support hose, licorice root, etc. To avoid/reduce nausea, I found it helpful to only eat very small amounts of food spaced throughout the day. Regular size meals always exacerbated my symptoms. Thankfully, though, I have not had the GI problems that a number of people on this forum have experienced, so they may be able to give you more suggestions along those lines. Fatigue is my limiting factor nowadays; if I didn't have it, I'd be leading a very normal life. In response, I take NeuroHelp supplements daily (lots of vitimins, fish oil, etc. to nourish my brain and give me more energy), and a low dose of Adderall 5-6 days per week (often prescribed for ADD/ADHD at a higher dose, but I use it to combat brain fog and give me extra energy). I continue to eat a very balanced diet and allow myself 8-12 hours of sleep at night. I've learned to pace myself carefully (overdoing just makes recovery take even longer), to do daily exercise in managable portions and increase it very gradually as my body allows, to ask others to do things that wear me out, to venture out to stores when it's fairly quiet, and more.... It's important to find out what makes your symptoms worse and then minimize your exposure to them. It's great that your physicians were open to the possibility of dysautonomia instead of just anxiety/stress. At this point, if they're confident that they've ruled out other heart problems/medical conditions, you'll just have to start experimenting with treatments and work on adjusting to your body's new limitations. It can be a frustrating time, but it's totally worth it if you can find some things that work. Good luck & feel free to PM me if you'd like to talk! Angela

Welcome Dino! Yep, symptoms get worse for me before my period, too, although not majorly enough to merit medicinal intervention. Interestingly enough, since I got sick, my periods have been worse. They always used to be very easy and fairly pain-free...not anymore. Welcome again! Angela

What a refreshing experience! It's so nice to deal with people like that who are interested and teachable. Hope you can enjoy our NJ spring! Angela

Welcome, Danielle!

Have you tried searching the MD list on the Pots Place site? I was originally seen by a cardiologist, initially diagnosed by an electrophysiologist, then had the diagnosis confirmed and started a helpful treatment regimen out at the Mayo Clinic. Hope you can find someone to help soon! Angela

Ah, yes, those lovely EEGs. I've done several regular, two 24-hr, one 48-hr, and one 5-day EEG trying to catch epileptic episodes (my brain was too crafty, unfortunately). Don't worry too much about the goop they use for the electrodes; the stuff they use nowadays is still goopy, but so easy to wash out compared to the old stuff. Most of my EEGs were done back in the early to mid 1990's and the goop was more like superglue -- after the tech's ministrations, it took my mom 2-3 hours of scrubbing it with acetone (nail polish remover) and more than a week of hair washing (more than once a day, no less!) to get that stuff completely out. And it left my scalp a little sore in places where it had taken a layer of skin with it! I had one done in 2006 and couldn't believe how blessedly simple the goop-removal was; most of it came out at the hospital and the rest when I washed at home. The technician said she'd never seen someone so excited! Hope you find some answers! Angela

Sarct, I have to be careful how much salt I put in a dish I'm serving to the rest of my family, too. My dad needs a higher-than-normal sodium intake so he probably wouldn't notice, but the others would certainly be gagging from "salt poisoning" if I forgot! ;-) Thanks for the post, Joe! Angela

Welcome, Aquadiva!

Welcome Rachel! Stress is definitely one of my triggers. I do as much as I can to decrease situations/experiences that will be stressful -- anything to decrease "couch time!" Glad you've been able to cope with it pretty well. My BP and HR have always been on the low side (base HR was super low back when I was in training -- 37 or 38), so I can sympathize with you there. I never managed to raise any sky-high numbers in either category even when I was symptomatic, but the amount of change was significant enough to eventually draw some attention and get us on the right track. Black-outs, etc. helped, too. ;-) Have fun with the kids! Angela

I tried Ritalin for cognitive issues (e.g. brain fog) and lack of energy. Even on just 5mg a day I noticed an improvement in my ability to function. After playing with the dose in an attempt to find "the best fit," we decided that 20mg was the most my body could handle; 30mg made me tremble so much (albeit imperceptibly to others) that I couldn't speak and also made me feel a bit anxious. Any of the doses made my heart feel a tad fluttery, so we switched over to Adderall to see if it would work better. 20mg per day of Adderall has been fabulous in my case! It has been super helpful in combatting brain issues (more than doubles my efficiency and information retention), helps get me started earlier in the morning, and allows me to spend a greater proportion of the day studying/working than when I don't take it. What's more, I experience essentially no negative side effects (see below) and don't even feel like I'm "on something." I still have to rest during the day, but the breaks tend to be fewer and shorter than before. If you have trouble with fatigue, I would caution you not to go activity-crazy on either of these medications. They both can give people a false sense of abundant energy. I've found it helpful to skip taking it a day or two per week and gauge how much I can accomplish without the medication, just to be sure that I'm not increasing my activity level too much or too quickly during the rest of the week. I've found over time that my ability to function when off of Adderall has gradually improved, even though it's not nearly as good as when I do take it. Hope this is helpful! Angela

Welcome Marti! I haven't dealt with most of the issues you mentioned (I must be from the wrong side of the POTS family tree!), but this is certainly the place to find other people who do. Glad you found us! Angela

Wonderful news, Deb! I'm so glad to hear that you're doing well. Thanks for taking the time to give us an update! Angela

Laura, Sorry you're having such a tough time. It is hard to give up so many of the things that you love to do and experience most; it doesn't help it when "normal" daily living gets difficult, either. It really is heartbreaking at times. All of us on the forum have had to give up many of the "loves" and "passions" in our lives, to varying degrees depending on our individual situations. In some ways, I feel like parts of me have died during my 4-year ordeal with these illnesses. As a former dancer and athlete, I can sympathize with your frustration at wheezing just going up stairs -- it's extremely difficult for those of us who were very physically active and able to suddenly feel so wimpy and weak and sedentary. And that's on top of whatever battles we're waging with other symptoms. I'm one who's most comfortable "pushing through" difficulties -- I'd rather tough up and smash through barriers than be patient -- so POTS/CFS has been hard. I can't just tough my way through significant drops of BP, post-exertional fatigue, and brain fog; that just makes matters worse. I've had to learn patience. In addition to patience, however, I found three habits very helpful in coping with loss of activity and separation from things I enjoyed most: 1) I avoided things that made me feel down and accentuated my losses. It meant rarely watching ballet on tape, cancelling dance magazines, removing pointe shoes from my room.... If there were movies that made me feel like a wimp because the actors (stuntmen, really) were doing great feats of endurance or physical prowess, I didn't watch them until I could see them without feeling worse about myself. Something that was depressing one day might be fine (or great fun!) on the next or 3 months later, so I made choices on a daily basis leaving myself room for change. Flexibility is the name of the game! 2) I took note of the things that I still could do. During my two years on the couch, it was little things like the fact that my legs were still strong, I could still do a split in the air (even if it was lying on my back), my turnout had not suffered, and I still had strong feet with lovely, high arches that other dancers would die for. It was something. I still am not able to go back to dance class and my symptoms still severely limit how much I can do at home...but I take comfort in the fact that I can still do a double pirouette on the kitchen floor, my technique is still beautiful when I do a few steps here or there. It may not seem like much, but even those little "tastes" of something that I loved so dearly are precious; I would rather have a little nibble than none at all. 3) I found new hobbies and interests that my symptoms would allow. For me it was photography, embroidery, drawing, colouring, learning more about interior and garden design, birding, packing backpacks with school supplies for needy children, writing letters to soldiers overseas, scrapbooking, getting in touch with friends from our Africa days...and many more. I've adjusted my pursuits as my health has required. When it improved, I was able to do things I hadn't been able to when I was confined to the couch. And my abilities still change daily -- if brain fog is too bad, I skip reading & writing and do things that don't require brain work, like photographing birds outside my window or listening to music. If I have to spend time lying down, I do something lying down. Frustrating as this illness has been for me, I can't deny that it has really allowed me to "broaden my horizons" and develop new skills and interests. Don't beat yourself up for things you can't control. It is hard to be patient and to deal with so much loss, but you can manage your way through. We've all had to and will continue to. There will always be down days (everyone has them -- healthy or not), but you have to help yourself learn to deal with them. Otherwise, this illness will only make you feel old and bitter and crippled. Look for the opportunities this illness is bringing you. I would not have willingly chosen to be ill with this condition; the last four years of my life have been laden with many, many tears. But I can't tell you how many people I've met --friends, business clients, random strangers who heard about my situation from some source-- who've told me how much inspiration and hope they've drawn from seeing and hearing about my struggle. Countless people have written, called, or told me in person that seeing my smile and hearing my laugh in view of what I've been through makes their own troubles easier to bear. They see hope and joy of life springing from a situation they can't even imagine living through. I always wanted to do things and go places in an effort to help other people. To me, being stuck on the couch with brain fog so bad that at times I couldn't speak or understand what my family said to me was crushing. It made me feel so useless, so purposeless, such a waste of good oxygen. What good was I to the world if people who needed help were out there, while I was in here and unable to talk to, let alone help, them? It's been such a joy and such an encouragement to learn that I was helping, just in a different way than I had ever envisioned. And it helps to know that the pain and the frustration was not really for nothing...it's helped to change lives -- to change the world -- in its own small way. Now as I step back out into the world, working and starting college, I bring the lessons I've learned from chronic illness with me. It was not the path I had intended for my life, but these four years have been anything but a waste. So keep up the good fight, Laura. It's tough, but you'll make it. I hope your time at Stanford will be profitable. Feel better, Angela

Congratulations!!!!

Thanks, all! Kristen, yes, I will be driving to school. I can't see forking over money for living in dorms when I'm taking such a light courseload (and will get more rest at home anyhow). The commute is very manageable and by trying to group my classes into fewer days on campus, I can conserve more energy for studying at home. I'm also looking into taking a "hybrid" Freshman Composition class -- "hybrids" meet on campus 1 day a week, then students participate in extra discussions, peer editing, etc. online at their convenience during the week. I do fine with online learning and would really benefit from any extra flexibility of schedule I can concoct. I just spent the morning on campus for the Admitted Students Open House: getting a tour of the Landscape Architecture department's facilities, meeting and talking with a few students and faculty, etc. It was a very profitable time for me and they really appreciated my enthusiasm and questions. Next step...getting ready for placement tests! Thanks again! Angela

Glad to see you back, too! Thanks for the update! I hope those treatments will continue to help get you back on your feet (and stay there! ). Angela

Just wanted to let you all know how I'm doing. I haven't been super active on the forum this past year because of increased activity outside the house, but lurk every now and again to stay connected. I have such good news, though! This past summer and fall I was well enough to start working part-time as a receptionist at the Pilates studio I trained at during my dancing days. My job description quickly mushroomed as I undertook the lead role in switching us from paper to computerized recordkeeping and scheduling (young blood works wonders!), but I was able to sustain my activity without difficulty between the combination of medications, preventative measures (e.g. high salt and fluid intake), pacing, and flexible hours. My boss was happy to have me 3-5 hours a day, 3-4 days a week. Due to a family emergency and many holiday visitors this winter, however, I had difficulty recovering completely from a virus I caught in late October. I spent Nov and Dec mostly on the couch. I lost about a year's worth of progress in terms of my level of function: no work, no reading, trouble with daily living activities, etc. Finally in January I had an uninterrupted stretch in which to recuperate and was able to start studying again and do a little work from home. Since then, my recovery rate has been pretty fast compared to other years, but I have not made it back to the office because... In late January I got my acceptance letter to Rutgers University!!! I'll be working towards a degree in Landscape Architecture. Who knew that lying on the couch for a couple years looking blankly at pictures of flowers would introduce me to a new career path? I was planning to apply based on my steady progress in 2007, and, despite the second thoughts my winter setback fostered, I managed to complete my college essay under the cloud of brain fog (and they liked it!). I've spent the last month filling out paperwork (e.g. disability documentation/accommodation), getting a head start on reading textbooks, reviewing math in preparation for placement tests, etc. I'll plan to start out taking 1-2 courses per semester to avoid over-taxing my energy, and gradually increase my workload as health allows. I've already discussed my general situation with the program director and he's been very supportive. The university is only about 30 minutes from home, so the commute won't be bad and I won't have to bother finding new doctors, etc. It'll probably take about 7 years to finish my degree (so much for all of the Class of 2012 stuff several organizations at the university have been sending!), but I'm thrilled to be moving forward in this goal! Well, that's the latest segment of my little success story! Thank you all again for the support and information you've provided me with during this illness. I'm not planning on cutting my ties to the forum or anything, but still I want you to know how much you've meant to my family and me. With love, Angela

Just chipping in my own cheery welcome, Sandyshell! Glad you found us! Angela

Welcome Always Hope! I'm in the recovery stages at this point -- just started working part-time this summer and anticipate continuing through the fall -- but still have to explain my limitations to others. You've had some great responses to your questions already, so I won't add a lot. 1) Close friends & family: I always start off with the full name Postural Orthostatic Tachycardia Syndrome because it sounds complicated and serious, then give it a simplified explanation. "...which basically means that when I sit or stand up, my blood pressure plummets while my heart rate skyrockets, causing me to faint. Most people's bodies have no trouble compensating for sitting and standing because their autonomic nervous system (the nervous sytem that regulates HR and BP among other things) makes any necessary adjustments automatically. For some reason, my autonomic nervous system does not communicate properly -- researchers are still trying to discover why. On top of that, I have Chronic Fatigue Syndrome..." etc. I always throw the Mayo name in, too, because it always impresses people that this is indeed a serious problem. I try not to go to heavily into the medical details unless pressed to do so. As I see it, I need to briefly make them understand that: a) these are real, recognized MEDICAL conditions aa) these conditions are of uncertain origin and are still in the research stages, so there is no miracle cure c) these are chronic conditions that I have and and will battle for several years d) prognosis is unpredictable so we rejoice over every little step forward e) what the most disabling symptoms are and how they limit me f) how I have needed to change my daily living to function g) what steps we are taking to encourage long-term improvement h) the latest big step forward I made (whether it was being able to sit up for a meal, walk to the end of the driveway, etc.) It looks like a lot to cover, but in reality, you become very adept at making concise yet effective explanations once you get enough experience at it. A word to the wise...don't wear out their attention span. If they press you for more information, by all means give it to them, but otherwise keep it brief. They will not take you seriously if they are bored by the conversation. Watch their body language. I just read the spoon theory mentioned in some of the posts above and think it's fantastic for close friends and relatives. I've been using a bank account analogy that operates along the same lines as the spoons and people respond very well to it. I think point "h" above is very important, too. Not only does it show people that I'm not depressed, but it helps them understand how seemingly little things are huge accomplishments for me and make my listeners more thankful for the things they take for granted (e.g. taking the mail out of the mailbox). 2) close acquaintances at work: Yes, you usually don't go into as much detail with them. If they mention that they "sure hope you've gotten everything taken care of and hope you're feeling better" I'd reply with something along the lines of: "Thank you. We actually haven't been able to get to the bottom of it yet. Because this is a chronic illness still in the research stages, there's no known cure. My doctor's and I are still working on coming up with treatment options, but until we find something really effective, I'm not going to be able to work at the same pace as I used to. But by making x, y, z changes, I'm able to function. I'm just thankful to be able to come to work each day; there are a lot of people with this same condition who are too sick to leave home." If they ask for more details, go ahead and answer them honestly. This is no time to play the stoic sufferer...people will not understand what you struggle with if you do not disclose a struggle in the first place. When people have brought up the "but you look fine" comment to me, I usually answer something along the lines of: "Thank you (little laugh). I must admit I'm glad to at least look like a somewhat normal person even if my blood pressure is pretty nutty. My family can usually tell, though. Certainly they know about the adjustments I've had to make in daily living, but they can also see it in my eyes." 3) Regular friends and neighbours: Answer them honestly. Again, don't talk past their attention span -- that's like taking bows on stage after the applause is over -- but take advantage of the opportunity to educate them and help them understand what you're dealing with. If they ask how your trip to Mayo went or if the testing you did at the hospital was helpful, tell them. "Thank you for asking. I'm feeling pretty worn out after the travelling and testing, but it was a helpful trip. They confirmed the original diagnosis and were able to give me more information about it. Since it is still in the research stages, there isn't a known cure for it yet, so my doctors and I will have to experiment with various treatment options and hopefully come up with a combination that works." It's a difficult stage to be in, Always Hope, when you (sort of) know what's wrong and are trying to explain a diagnosis that most doctors haven't even heard of to friends and co-workers. I used to dread it, quite honestly, and preferred to avoid talking to people rather than try to explain this mystery illness to them. You'll get used to it, though. I take encouragement in the fact that each time someone asks, I have the opportunity to educate others and hopefully pave the way for better awareness/sympathy for POTSies and PWCs in the future. Makes me feel like a pioneer helping to change the world. Feel free to PM me if you want. Angela