mallen1

Rachel, In terms of increasing your blood count so that you feel better, epogen takes 4-6 weeks by most accounts. It acts on the very beginning of the RBC synthesis cycle, and as such takes awhile. It's thought to stimulate stem cells in your bone marrow to differentiate into red blood cells. That's a bit theoretical and sketchy, but it definitely works on the bone marrow. Many people feel better much sooner than that and no one knows why, but in terms of increasing your hematocrit (RBC count), allow yourself a month. Take Care, Mark

Thanks for the replies! drg, yes I've done the echocardiogram it's not CHF (congestive heart failure) or anything pump related. To be more specific, it's after lying down for a protracted period of time, especially if I drift off I can almost guarantee having an episode of palpitations/diaphoresis. If I pop up like a jack-in-the-box it definitely makes matters worse adding tachycardia to the scenario, but if I gently transition myself to a comfortable overstuffed chair, the episode partially resolves. Splanchnic pooling? I have not a clue. Take Care, -Mark

I often feel most ill after I've been lying flat for a time. The episodes seem to be partially relieved when I sit up in a chair. This seems at odds with the theories I've heard about dysautonomias in general and how they derail your systemic blood pressure. Is this positional experience shared by others? Any thoughts? Take Care, -Mark

Flop's right, a lot of the commercial one's aren't the best and if you have a watch with a second hand you can do just as well taking your own pulse like the doctor does, touching the artery in your wrist while looking at the second hand for fifteen seconds. For me, a sweep second hand is easier than a digital, but whatever works for you. Then, as mentioned, multiply by four. -Mark

Anytime you are consciously aware of your heart, anytime you can "feel" it, that's not normal. That's actually the definition of palpitation. I realize you just saw your cardiologist and are likely not keen on pestering her or him again, but your cardioligist should be aware that this happened. Unless you are choosing not to disclose stuff for insurance reasons or whatever, this event should be in your medical record. -Mark

Lina, Every night, like clockwork. Every 60-75 minutes I'm startled out of an unpleasant dream, drenched in sweat and short of breath. I go through several t-shirts each and every night and usually change the sheets at least once, though that's when most often I throw in the towel and get up out of bed. Like three hours ago. Quite annoying. An endocrinologist of some renown told me that this was atypical panic disorder. Now, I appreciate a valid psychiatric diagnosis and I have the couch time to prove it. More to the point, I like a good yarn as much as the next guy. But really . . . Take Care, -Mark

Remember that I'm still waiting on an expert objective diagnosis as to what's wrong with me. With that in mind, I have episodic hypothyroidism with abnormal response of the feedback loop. Basically, below normal T4 with normal TSH (in normal folks the TSH would be higher). I episodically go on thyroxine when this occurs. Relevant or not, my mother (who also loses consciousness when she stands, has Restless Leg Syndrome and Fibromyalgia) had thyroid cancer as did a female maternal cousin. Both did well with surgery and radioactive iodine. I don't know the subtype of thyroid cancer, but if it's meaningful to you I can find out and post it. Take Care, -Mark

Excellent point. A few years back when I was still working in hospital as a resident (after my plane crash, before my back surgeries) I started getting belly pains and feeling unwell. I figured, nothing new - went about my business as it got worse. I always have GI problems. I closed the door to my office out of embarassment. Then I thought, "great, they'll find me dead in here".Forty-five minutes later I had an emergent appendectomy. -Mark

Thanks Dawn. Thanks for being kind. -Mark

Briarrose, the thought never crossed my mind. I found the historical journey fascinating. Medicine advances in quantum leaps that are frequntly associated with wars as wars manage to mangle many people in myriad ways all at once. Speaking of war, is your screen name a reference to Sleeping Beauty or the Jane Yolen fiction that weaves the horror of the Holocaust into the fabric of the classic fairy tale? Stress is stress and from a scientific perspective, I'm not so sure that the ANS differentiates between the physical and the psychic. The ANS is primordial. If someone takes a baseball bat to your back or you see your freind's head shot off in Anwar Province, I have to wonder if the ANS digests and responds to those two experiences differently or not. Me thinks not, but that's my opinion, not tested theory. But hey, I like my opinions! What's your's? Amy, I hear you regarding the stigma. It leads to ignorant fearmongering and that leads to bad science and incomplete medicine. Fortunately this is becoming politicized state to state under the grassroots movement called parity. Oregon passed legislation that went into effect January 1st making it illegal for underwriters to provide different levels of care based upon whether your problem is defined as psychological or not. This interests me in light of the military discussions above and dysautonomias. What is stress? Then what is PTSD? Decartes and his cartesian duality was inaccurate and that was a long time ago. He's also overrated as a philosopher. It's time we caught up with reality. Amy, in your opinion, how do we get rid of the stigma? Change the language? Educate people? I wish I had the answer. Does anyone? Take Care, -Mark

Lina, Most everything I know about whatever it is that's wrong with me I've learned from listening to peoples' stories. I would very much like to hear yours. It helps me immensely, it's hard to explain, but it does. If you ever feel so inclined you will have a dedicated audience, I promise. Take Care, -Mark

. . . and I (New Kid On The Block) thought of myself. Here's why: Several months back I was working with a really great psychiatrist. I was having a tough time juggling a quite improbable clustering of really tough stuff - my health, familiy tragedies, unforseen responsibilities due to a brain injury suffered by my mom, career issues, marriage, just a really long list of real life issues smashed together in time for whatever reason. My psychiatrist asked if I cared for a diagnosis. I shrugged my shoulders and said, "sure". He said, "you react just like a PTSD patient". Curious, isn't it? Take Care, -Mark

Lina, Yea, it's a double edged sword. I may know some stuff, but personally, it hasn't been worth a lick in terms of me feeling better. And for me, that's the whole deal whether I'm caring for a patient or sick myself. Sometimes some doctors forget that. Their brain is working on so many things at once that they loose the forest through the trees. They (we) forget that the only thing meaningful to someone sick is not feeling sick. Not, "I just consulted the neuropsychoimmunology geneticist for you" or "I just read a fascinating article that reminded me of your case in the Journal of Obtuse and Arcane Medical Words and Concepts, Sept. 1998".Having been sick for many years, the only thing I care about is not feeling sick. The rest is window dressing. For now. I sincerely hope that you have your own docs dialed into the reality of your condition and are getting some relief. Sally, I'm so sorry to hear of your loss. I've been around small planes my whole life and have lost friends as well. I really feel for you - the phone rings and your life is different forever. Also, thank you for the warm welcome. This community with people like you has been a godsend to me. I am starved for information. I read every word here with care. Patterns are starting to emerge as my modest brain makes a connection here and there, so please, keep telling your stories. I am a patient man. I've had to become one. Maybe my mission in life is to allow you all to help me so that I can help you. Who knows? I wish I was a fortune teller.

Dizzygirl, Just to chime in with the rest - 29 is way too low and you are right to be concerned. I'm guessing that your dysautonomia doc would definitely want to know that this happened. Another thought: perhaps you could ask your dysautonomia doc how to quickly explain your unique condition to the triage nurse or whomever the first person is that you speak to at your ER. Maybe a note stapled to your ID or some type of medical information card that is visible when they open your wallet if, God forbid, you are unconscious at hospital, perhaps this could be of help to you. Take Care, -Mark

Doctorguest and all, Again thanks for the compassionate input. Doctorguest, you brought up a great point about this syndrome having been around for centuries. What is new and may be shifting the epidemiology a bit is the explosion of spinal proceedures over the past generation and the advent of minimally invasive technology and interventional access (through the blood vessels starting at the groin). I may be part of the problem. I've done research and helped publish a paper on percutaneous vertebroplasty (going through the skin to cement a damaged vertebrae) without ever having heard the word, dysautonomia. Food for thought and thought for discussion . . . -Mark

Kendra, As others have been saying, realize that you are making a relationship with the whole office. If you don't feel right with the person answering the phone, that's important. If you feel rushed, or aren't certain that you doctor is actively listening to you, that's important as well. Finally, and this is the least important, I happen to be an MD. As a physician, all other things being equal I would select a doctor board certified in Internal Medicine. Their training better prepares them for unusual patients like us. It just does. Of course there are exceptions, but again, all other things being equal . . . Congrats on firing the doctor who wasn't caring for you the way you needed. That takes guts. If they take it personally, tough. Take Care, -Mark

mkoven, How are you feeling now? Any different? FWIW, I too show dropped beats during a stress test. What's unusual and what struck me in your post is that for me, they correlated with my palpitations, i.e. I was feeling each dropped beat. Neither the techs nor my cardiologist had seen that before, but hey, this is Central New York. At baseline, I experience somewhat the opposite of what's plaguing you. I have Inappropriate Sinus Tach for which I'm on Toprol XL, a beta-blocker. The above testing was precipitated by a resting pulse of 157 in the ER and me thinking that I was going to die. I didn't want to die. Not there at least. Should your physician set you up for any cardiac testing, it would be interesting for both of us to know if you "feel" your dropped beats. Most important, I hope that you feel better. I can sincerely empathize with that rollercoaster feeling. Hang in - my thoughts are with you. Take Care, -Mark

Amy, thanks! Y'all seem kind-hearted. Deucykub, I do respect Mayo's research history. They've unquestionably advanced the science of medicine over the generations. I was screwed over by one guy in one department. He's just a guy. And FWIW a great researcher and scientist; I know as I've read his work. He's just a lousy healer. He is a socially impaired two-dimensional lab rat with an MD. He's not alone. Ernie, 30 or 40 years ago, to circle the wagons was a given. We watched each others' backs and cared for each others' children gratis. There was camaraderie and professional courtesy. No more. I mean, if you're working together I suppose there is. Like the time I took call for a colleague who was in jail on a DUI. But altruism is rare if not dead. The spine . . . pat57, tell me why you think what you do about spinal cord stuff and its relationship to dysautonomias. I'm very, very curious to know your thoughts. It's been a pet theory of mine for awhile. And Nina and Maxine, you both with the back injuries. Doctorquest - may I ask you as well why you think along the lines you do? I'm not challenging anyone, it is something I'm objectively and personally curious about. 'Just trying to think outside the box as the box isn't being all to helpful! Steph, Maxine, Mary, and rgt9191 - thank you so much for your compassion and as I said before (I think), thanks y'all for welcoming me with such open arms into your community. rtg9191, I'm just outside of Albany in the woods. You asked where I hailed from. 'Ever hear of a Peter Novak, MD, currently @ U Mass; used to be at Boston City? I'm guessing this following feeling will resonate with some of you. For so long I have felt absolutely alone in the universe with this awful thing that nobody understood and some didn't even take seriously. One anecdote: this spiritually inclined freind of my wife said for me to save myself I needed to find my center and embrace it. For those of you who have seen the film, American Beauty I flashed on the scene toward the beginning and Lester's (Kevin Spacey's) oft quoted line, "The only way I could save myself now is if I start firebombing". Don't even ask my why I flashed on that. It seemed relevant at the time. The spiritual woman stared at me like she was wondering if I was armed. My wife just stared. Oh, to be misunderstood . . . Sandra, your labs and stuff sound way too familiar to be coincidental. I'm very interested in as much detail as you feel comfortable sharing with me. PM me directly, or if you prefer, I can give you my private doctor's contact info and you could forward it to her, telling her what to keep confidential. If that sounds odd, it was sugested to me by someone else, a frend of a friend who was more comfortable doing things that way then handing his private info directly over to me. Whatever works is fine by me. And my physician - the woman can keep a secret, that I promise you. I'm starved for data and every bit helps, any way I can aquire it. If I've failed to address anyone's ideas, thoughts, questions, theories, please repost them, PM me or whatever. If I spaced something out it's because I spaced something out. Everything y'all wrote here is gold to me. Again - thanks. Take Care, -Mark

I am humbled by the compassion and information y'all have offered up welcoming me into your community. It helps. Certainly more than most of the specialists I've seen. And here's the tough part to admit: I'm a physician by trade. The M.D. after my name is courtesy of Tufts Med in Boston. To see the amount of grief my profession has inflicted on so many people other than myself is tough to wrap my mind around. By the way, don't be shy about slamming physicians. I do it every day, so blast away. I've assimilated loads of relevant data over the past week or to and am beginning to sense patterns I didn't see before. Logic may have a place here, but you guys are correct. At this seemingly embryonic phase of understanding, logical theories are few and far between. At least that's been my experience. And believe me, being a doctor doesn't temper my frustration. It may even make it worse for me as I know so much more could be done and in a perfect world. The collective suffering I've intuited from this board could be minimized. But in the real world of thirteen minute office visits - it is very, very difficult. I'm drifting a bit so I'll close for now. Lot's of folks have asked caring questions about my condition which I'll respond to after a quick rest. This back and forth really helps me to fill in the canvas. Thank you for this place, this community. Take Care, -Mark

Pat, Yes, I'm contributing to the Global Fund! On the other side, I am the pariah of my insurer who wants me to die soon, I am sure (or at least their shareholdrs do). Pat & Nina, Thanks for welcoming me to your community. Have either of you found a dysautonomia physician who gives credence to the association of spinal stuff with all the other stuff? How's that for a poorly written sentence! Until later . . . Take Care, -Mark

Well, not a kid actually. I'm a 45 year old guy who managed to be in a Learjet that crashed on takeoff several years ago. It mangled my back and I have the scars to prove it. It's been over five years since I underwent the last of four spinal surgeries (the first two were bungled, the last was a fusion - long story). Basically, I've been ill ever since. I'm not saying that one thing caused the other, only that they are related in time. I'd be fascinated to know if anyone else experienced a correlation with the onset of thier symptoms and some type of back proceedure and/or injury. I carry 14 or so uncoordinated diagnoses over my shoulder like a bag of bricks which is mildly annoying. It bothers me as a scientist and biostatistician and drives me nuts as a patient. Let me run the list of signs and symptoms: orthostatic intolerance, inappropriate sinus tachycardia with palpitations, dropped beats and multiple PVCs (premature ventricular contractions - not necessarily a big deal), profuse sweating episodes and labs indicating the presence of adrenaline 10 to 13 times the upper limit of normal (on three separate occasions, two different labs). This sent me on an incredible odyssey, hunting for a pheochromocytoma (a tumor of the adrenal gland). They were sure. Absolutely. By now I have a bevy of endocrinologists in tow. I'm dispatched off to the Mayo Clinic in Rochester. End result: nothing. I have anxiety (well, yea) and the lab results: laboratory error. See ya! What else - in no particular order, B12 dependent (IM) pernicious anemia, fasting hyperglycemia or hypoglycemia- never normal, resting BP where the bottom number oscillates from the 40's to the 90's given the day, low thyroid with an uncoordinated feedback loop (inappropriate TSH response for the technically inclined), chronic pain, malabsorbtion, multiple wierdo autoimmune irregularities that come an go, e.g. Lupus Anticoagulant (which does not indicate lupus), antiphospholipid antibodies, insomnia, depression, bloody tired all the time, no appetite . . . there's more, but I'm spacing out so I hope that I've painted an relevant if incomplete picture. The concept of hyperadrenergic dysautonomia is one I had never heard of until a month or so ago, despite having spent the better part of the last eight years in doctors' offices. I don't truly know if that diagnosis applies to me. What I do know is that one or two of these things I could deal with. Dogpiled like this, it's destroyed me. Sound familiar? There's a lot about me other than this condition, but I don't want to bore anyone who has been kind enough to read this far. What am I searching for? Logic, rationality, compassion and perhaps a physician who can see a pattern in this chaos so as to take the next step and help me to feel better. And hey - thanks to all you folks for creating this space. Take Care, -Mark