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Hi Patti, I just returned from a visit to Dr. Low at Mayo last week. Like you I was unsure just how to get in to see him (I found out when we were there that he can only see about 20% of the patients that ask to see him) or any of the other neurologists there. The way I went about getting in was by: 1) asking for an appointment with Dr. Low 2) having a referral from my cardiologist, but adding some of my own information to what she sent (I wanted to stand out as different from the other hundreds of people sending in bland run-of-the-mill referrals). 3) I wrote a short narrative of my case (what I was doing before I got sick, progression of symptoms, my severe decrease in activity level, what little I can do now). That way he could have a very complete look at how much this illness has disabled me -- my dad's a doctor and says that sort of thing is a doctor's dream because it's much easier to gather initial thoughts about a case when all of the information is put together chronologically. 4) Summary of all my tests (grouped by dept. -- blood work together, cardiology together, radiology together, etc.) and their results & important observations. 5) Copy of the summary report from the electrophysiologist at UPenn that gave my primary diagnosis of POTS and recommendation for further testing at a MAYO or NIH type of research center -- all of his explanations and reasons for diagnosing POTS under the peculiar circumstances were concise but well-documented. This further supported my claim for needing highly specialized testing and consultation with people who see this day in and day out. All in all, is that what got me into Mayo and Dr. Low in just 4 months? I have no idea -- I think God's plan all along was for me to take that trip out to Rochester, but I know that my additions to the referral only helped; Dr. Low mentioned how "beautifully documented" my information was! Just one last note regarding Ann's post. Why do we go to these places? DO they really help? I've asked that myself at times when I'm just so tired of tests and talking to more doctors. BUT MAYO WAS TOTALLY WORTH IT! The staff was very friendly and compassionate and listened to everything I had to say -- no one made me feel like I was a bother to them. I was taken very seriously and at all times felt like their sole purpose was to get me better. The testing was performed extremely quickly (only two days for my quota!) and all of the technicians understood about my symptoms (very attentive to trouble standing and sitting up, shower temperature, etc.). The final consultation with Dr. Low was not at all rushed; he answered any and all kinds of questions I had, explained all of the test results, gave me a final diagnosis, described my new treatment plan, and carefully outlined what the future might hold for me (in terms of career, activity level, health over the next year or so, etc.). I was a person to him. I don't know what your cases look like, and maybe you've already received the best care that you can get, but in my case, the MAYO experience was certainly worth the energy I put into it. Hope this is of some help! Angela

Thank you all for your suggestions, especially about hotel comfort vs. price issue -- that's the main thing that I've been mulling over. This is all a bit new for me so I'm happy for ANY advice! Thanks again! Angela

Hi all! Got a call from Mayo last week letting me know that Dr. Low will see me in mid-April!!!! The packet that they sent has a bunch of accomodations that I'm systematically wittling down, but I wondered if any of you could recommend a good place to stay there in Rochester. I'd prefer a place that's cheap (less than $70 per night), has a kitchen (to cut down on expenses) & is close to a grocery store, is reasonably clean, and hopefully not too far from the clinic (to avoid lengthy commute). Any advice on transportation, accomodations, or anything else you can think of that might be helpful to me during my stay? Thanks! Angela

Welcome Vemee!

Best of luck with your new exercise regimen, Tearose! Glad to hear that you're feeling stronger! Stick with it -- I'm glad you've been able to see some results! Angela

My resting HR varies from 37-50 normally. I've been told that BB will contribute to lower HR (so the MDs won't start me on one). I was in very good shape athletically before the onset of POTS, so I'm not sure how much of it is POTS or how much is from all the exercise I was involved in (I think it's probably a mixture of both, as I'm not exercising now and it's still low). All in all, I wouldn't worry too much about HR in the 50's, especially if you're on a BB.

Hang in there, Mary! I'm thinking of you from our couch! Glad to here that Marissa's doing better! Angela

1. Angela 2. 21 3. POTS (tentative) -- possibly POHS 4. 20 5. NJ (with my parents) -- I was living in NYC until the POTS got too bad 6. Symptoms at worst: ~ Unable to move (too fatigued to move my limbs) ~ migraine headache, sensitivity to light and sound ~ fainting ~ cognitive impairment (brain fog, trouble remembering things, can't follow a conversation, can't think of the words that I want to say, thoughts get jumbled up) ~ drop in BP upon standing (20+ pts) ~ BP: about 80/50, HR: 37 ~ feel extremely cold (what would I do without my electric blanket? ~ insomnia ~ nausea ~ puffy feeling after eating a regular size meal (and I have small meals) ~ Difficulty falling asleep, intermittent sleep, unrefreshing sleep ~ sharp chest pains, difficulty breathing ~ racing heart >110, arrhythmia ~ clamminess ~ greyed vision ~ feel behind time (as if I'm standing still in a tunnel and everything is passing me by) 7. Symptoms at best: ~ can walk 1/2 mile before collapsing exhausted ~ lightheadedness, near fainting ~ BP: 90/60, HR: 70 ~ tremendous fatigue (can sit up for about 30 minutes) ~ can engage in intelligent and articulate conversation ~ only feel a little chilly wearing shirt, wool sweater and socks, jeans, down slippers ~ drop in BP upon standing (20+ pts) ~ trouble falling asleep or intermittent sleep 8. Medications/treatments, etc. that didn't work for me: Midodrine, Florinef (only helped a little initially, but has since only given me a constant migraine-like headache) *never tried a BB -- doctors were nervous about starting me on one because my HR was so low *stockings were not deemed helpful 9. Medications/treatments, etc., that do work for you: I function better on a high sodium diet and frequent fluid intake Other than that, we're all out of ideas

Hi Steven! Welcome! Sorry you're having this trouble! I don't have much to add to what the others have said, but agree with them completely. Our symptoms are not normal ~ at least in terms of the general world population. Do actively seek out help -- I found an electrophysiologist at UPenn who was able to give me an initial diagnosis and guide me towards the most appropriate places for further evaluation and treatment. I wouldn't worry about the syptoms, though. I've experienced all the things you've mentioned and have checked out okay on cardio tests, brain MRI & CT scan, etc. I get the headaches frequently, but more often when taking meds like Florinef, when it becomes almost constant. Are you on anything right now that could be contributing to it? Good luck on the dysautonomia research -- you've come to the right place! Please ask all the questions you want! We've all been in similar shoes at one point or another! Angela

1) Angela (real), Muggie (pet name my brothers made up for me) 2) The Bible -- my lifeline! 3) Ah...so difficult! The Scarlet Pimpernel (Jane Seymour & Anthony Andrews) is a good bet for favourite. Others I enjoy are: The Gods Must Be Crazy (so very much like home), Pride and Prejudice (another Colin Firth fan!), Emma (Gwyneth Paltrow & crew), Friendly Persuasion (Gary Cooper), Sargeant York (another Gary Cooper)....I could go on 4) Oh. Another toughie! Studying (especially European social history), travelling to new places, wombats, my deaf 14-year old Basenji-Beagle (plays nursemaid for me when I'm really feeling sick), my neices, people's smiles, foxtrotting into the wee hours of morning (if you're ever in NYC you have to dance with Lou Brockman at Dance Manhattan -- he's an amazing ballroom instuctor and tons of fun! ), singing Christmas carols with my family (between the 7 of us, we cover all voice parts as well as piano), sitting atop mountains in Maine in late summer, recounting memories as I scrapbook with my sister, teaching children and watching their delighted discovery of new concepts, cathcing up with old friends.... 5) I'm currently employed (from home) in transcribing and editing interviews for the memoirs of Nic Rodriguez, a famous master jazz pianist who gave up dentistry studies at NYU to perform with jazz greats including Louis Armstrong, Jelly Roll Morton, Duke Ellington, and Louis Russell.

Congratulations April! How exciting! I'll be praying for your transition to "momhood" and adequate rest. Ditto on Katherine's question, "What's her name?" I love to hear what and why people choose to name their children. Angela

Hi Pam! Welcome to the family! I'm still rather new to the dysautonomia scene, so I'm afraid I haven't much useful medical advice to share yet. I was first diagnosed with POTS by an electrophysiologist (neuros and cardios were baffled), so you might try seeing one of them as Katherine suggested. Keep us posted and ask all the questions you want! Angela

Hope you're feeling better soon Nina! Rest peacefully! Thanks for all of the love you have poured into us! With love, Angela

Mary, This is wonderful news! I'm so happy for you all! I'm sorry to not posted earlier to you; I've been fighting my own little battles here and have had barely the energy to get through that! I am going to post you a note soon, though! Keep up the faith and know that I'm praying for you, your husband, Marissa, and the doctors! With love, Angela

Hi Naomi! I don't have many helpful suggestions for you that haven't been mentioned by the others already, but wanted to welcome you to the family! This is a great place to find information on everything dysautonomic! Glad to have some more Aussie representation! 'Night! Angela

Hi Denise and welcome! I'm so glad you found us! As Jill said, this is a great place to get info on all aspects of dysautonomia. It's been such a help and encouragement to me! Good luck with the MD hunt! Angela

Hey Ben! I'm the one with a doctor dad -- yes, it's great! I get treated halfway better because the local docs think he's great and, I suspect, because they know he'll ring them up if I'm having difficulty with them! He's been helping me get my portfolio together to take out to Mayo, too [sigh of relief! ]. As to your question regarding doctors with POTS, no, I've never run into one. Most of the doctors have looked at me blankly when I mention POTS -- my dad, my neuro, and the electrophysiologist at UPenn who diagnosed me are the only ones I've met so far that have heard of it (and actually know something about it, too!). The only other doctor for whom the name POTS meant anything was a surgeon I went to for the removal of a small mysterious lump on my head. In one of the pre-incision visits, I mentioned that I had POTS. He stared at me in complete astonishment, thinking that I meant Potts Disease (tuberculosis of the spine! ) -- never heard of the autonomic POTS, though. Good luck with those pesky stockings. I don't wear them myself, so I'm afraid I haven't any advice in that arena -- those Michelin Man ankles don't sounds so...healthy, I suppose (sorry, I know that sounds absolutely ludicrous considering all the other problems we have to manage in POTS! Brain fog is running rampant and I'm having trouble finding suitable vocabulary to get my ideas across! ). As for your genetic musings, I have a friend with CFIDS whose mother has it. In my own particular case with POTS, however, we're still looking for genetic links. My mom is healthy. My seizures and migraines apparently come from my dad's side of the family. He has MVP (my heart is perfectly sound) and ocular migraines, but is healthy in most other respects. Well, I'm off to the couch again! Welcome once again to the forum, o zealous Sawickian -- glad you're finding it of help! Angela

Dear friends, I'm so sorry it's taken so long to get back to you all, but THANK YOU THANK YOU THANK YOU for your responses. I wrote a lengthy and heartfelt post to you all a few days ago, but hit a wrong button and erased it all! I hadn't the energy or brainpower to redo it then, so I'm trying again today. Take 2! I am feeling much better after a very lovely, though waring, holiday. I felt absolutely wretched when I posted (a perfect time to celebrate the birth of the one who made the lame walk and the blind see again, eh! ) and was so emotionally wrung out, compounded by more doctor appointment frustrations, that I just had to let everything out. I'm still pretty exhausted (I've had my 2 1/2 and 1 year old nieces here for a week -- precious little chicklets, but with unquenchable energy stores!!! ), but feel much more on top of things. I've studied your suggestions and thought things out a bit, so I feel more prepared for my future run-ins. I invited two of my best friends who had been away at college over (had a great evening of fun!) and was able to explain my whole situation to them, which helped me feel like I had a little better handle on communicating POTS to others without boring or confusing them to death. I'm trying to get back to my academic studies (brain issues had really become a huge problem during December) and get myself into better health. Once I'm able to function a bit better, I am going to look into what I might be able to do in the dance world for the present. I've never been really wild about coming up with original choreography, but I'm very good at crafting roles (making a character really come alive) and polishing choreography. I've considered coaching and know a number of local teachers, so that might be a possibility. I also love the costuming aspect of performances and I'm thinking about how I might get invoved in that as well. Kristen & Mary, I'm so sorry to hear about your own artistic heartaches -- thanks for sharing with me and your words of encouragement. Heading back to the couch for now. Hope you're able to look back on a year full of joys, and look forward to one even more so! With love, Angela

Dear Ben, Welcome! I haven't had a good dose of British humour in years (I grew up in West Africa and had a bunch of friends from England)! Your posts have kept me laughing! I'm so sorry to hear about your healthcare dilemmas -- psychiatric ward?!!! I (like everyone else on this forum) have been trudging through the medical mire (but on this side of the Atlantic) trying to get to some sort of effective treatment. I'm lucky, though -- only one doctor who didn't seem to believe how much the POTS symptoms have changed my life -- it's taken nine months, but she's finally starting to get the picture. My dad's a doctor (sports medicine, unfortunately), and has been a HUGE help in navigating the system. No need for a wig or pics of Fluffy -- we can use some more guys on here! Join the conversations and ask all the questions you like! Keep us posted! Angela

Dear friends, I hate to post this right before the holidays -- I just felt like I needed to talk out a situation that I ran into the day before yesterday. I guess it's sort of a hybrid of a musing, a venting, and a plea for advice. I was not feeling very well at all, but wanted to make an effort at some short shopping for Christmas presents. While I was at one store, I almost bumped into a girl I used to dance with -- she didn't see me, though. She's very sweet and I wanted so much to go up to her and say hi and catch up on what she's been up to, but, I'm rather ashamed to say, I didn't. I know it sounds pathetic, but I actually HID behind a column in the store as she walked past and then skulked around behind store displays until she left the store. It was a moment that I had been dreading...the first time I ran into someone from my "former life." I'm absolutely mortified by my behaviour, but at the same time, I just didn't know what else to do. As soon as I saw her standing there looking so very tall and thin and like the very successful dancer she is, everything that I've struggled with these last nine months engulfed me...not getting to laugh through mishaps with friends at rehearsals, no pre-performance excitement while applying make-up and donning exquisitely beautiful tutus and tiaras, the aching muscles from not being able to take class, missing the exhilaration of flying through the air as the music swells and crescendos, having difficulty walking around let alone dreamily walzing and foxtrotting around the floor at midnight, never running to catch the subway to get to my next class, having to pack away the size 4 pants until I can excercise to get myself back into shape (yes, I know it's vanity ).... I could see it all for a moment, could feel it all again as if it were real. Everything inside me rebelled at the idea of asking Emily what was going on in her life, knowing that the dreaded question would soon arise..."And so what are you doing these days?" How could I explain to her in the middle of the bustle and shoving of a crowded Barnes & Noble that a great deal of my life has been turned upside down? One does not simply shout over the surrounding noise that all one's dreams have been shattered...that life these days is regrouping from that sorrow and forging a new path, embracing the simple triumphs of the day such as doing dishes or getting a bowl out of the cupboard for breakfast without fainting. Sure, I could have used that standard line, "Well, I got sick in April and eventually had to completely stop dancing in July; right now we're still trying to find someone who can find a treatment that will get me back to more normal health." But, somehow that just didn't sit right with me. Maybe it was an issue of ego, not wanting to admit to this girl, who's been "groomed" from the age of three to be a successful dancer and now performs with NYC Ballet, that she's going to achieve a life of success in a field that I love, while I, at this point, probably never will. Maybe it was a matter of feeling like we really had very little in common now, beyond a love for dance. I still don't know. I'm not wanting to ramble and I know that most of you were not dancers, but you've all suffered your own particular losses and still work on adjustments to life that dysautonomia brings. I'm not even sure what sort of response I'm looking for in posting this, but I felt like I needed to let it out anyway. Please don't think that I'm in a pit of despair over the turn my life has taken -- I know God's has this all worked out into the most beautiful plan imaginable and I take joy & hope in life. I think it'll be easier to handle this sort of situation as time goes on, but do you have any words of wisdom on this sort of situation? Just wondered. Thanks for listening -- sorry it's so long for tired eyes and foggy brains! With love, Angela

What a wonderful Christmas present! Good luck with the appointment! I'm so happy that you're on your way to finding some answers! Keep us posted!

Merry Christmas dear ones! Still dreaming of a white Christmas here in NJ! Hope the new year finds you in reasonable health and joyful spirit! Safe and very merry travels, Nina! With love to all, Angela

Dear Kathy, I can only add a quick note at the moment. I've also taken Topomax, and was always sleeping the way you've described. However, usually when something funky has been going on in my body (migraines, frequent seizure series, tachy episodes, etc.), my normal reponse seems to be to kick into "hibernation" -- sleeping hours on end with short periods of unability to function inbetween. I'm not sure if the Topomax contributed to the sleep or if that was just my systems shutting down to repair themselves. At this point, I'm on the other end of the spectrum having difficulty getting adequate sleep -- if only I could have spread that extra sleep out a little bit! Sorry I can't give you a more helpful answer -- I thought I'd share the experience with you, anyway. It's so difficult to manage through school with these problems (my high school got on my case about my absences, but what could I do? I was doing the best I could, as was my neuro and the various specialists I was seeing.), and life in general becomes most definately unusual), but you'll make it through. It was very tough on my parents, too (still is!), but we've just had to take it one step at a time. There is an emotional toll to all of this (I can't count the number of times I've cried in agony or frustration -- my pillow has been better watered than any of my plants !!!), but my experience has been that the pain and frustration helps nurture patience, determination, and a very deep sense of compassion for other people's pain. You get a great medical education at the same time! I'll be praying for you, Billie, and the neuro as you try to sort this out. Stay strong and determined to find an answer, cry unashamedly when you need to, laugh whenever you can, and keep sharing with us. I'm glad you've found our family! With much love, Angela

Hi all! Just want to drop you a quick note before I head back to the couch to thanks you all for your thoughts and prayers! All my stuff is now sitting in my parents' living room, but it all arrived safe and sound -- I was very blessed to have fabulous movers. I'm very worn out, but everything has run smoothly. My dad ended up having a day off (his meeting was cancelled), so he's helping me get my room straightened up. I'm feeling very optimistic and and looking forward to decorating my little nook. Thanks again everyone! Angela

iRobot sells an AI vacuum cleaner -- amazing the stuff they can come up with these days! You might try looking it up on amazon.com and reading reviews from other people who have bought it. Angela