Merrill

Jaime, I wasn't sure what the endoscopy test entailed, so I read this page on WebMD: http://my.webmd.com/content/article/90/100...C-9531713CA348} I also did some more reading on pernicious anemia, following a few different links, on the Webmd site, and found this: "Pernicious anemia is a rare type of anemia in which the blood cannot absorb vitamin B-12, which is necessary for the production of red blood cells. Pernicious anemia can be diagnosed through a blood test and is simply treated with vitamin B-12 injections." Is your red blood cell count off? Is your doctor afraid you might have an ulcer and that you're bleeding internally from that? I couldn't find anything about using endoscopy to diagnose anemia of any kind... According to what I've read, if you do go forward with the test, it sounds like you wouldn't necessarily have to have it in a hospital...and that you wouldn't be likely to get general anaesthesia... (which is great--twilight sleep is much easier on the body, and I've had both this year). Did the doctor/s say that general anaesthesia was necessary for the procedure? As for the latex allergy, just say it out loud every time a new person walks into the room if/when you go for your test. Make sure other people attending you say it out loud too; you need to be reassured that they're paying attention! Good luck--I don't have personal experience to share, just a bit of research off the 'net. take care, m

YES! I do get episodes like that at work (unfortunately) where I feel like I'm reeling; I just get so tired! Only once in a while can I get away with putting my head down on my desk; a few minutes of shut eye helps quite a bit. If I can't do that, I get up and walk around a little or eat a snack--even yesterday I resorted to having a Coke, which I haven't had much of in recent months, but I gotta say, it made me feel great. Caffeine does help get blood pressure up, and yesterday, it didn't make my heart beat faster--at least that I could tell or that was uncomfortable.

Briarrose, the online handbook is a little bit tricky to use, but check the table of contents in the window on the left and you'll see Pure Autonomic Failure listed there with page numbers (if I'm getting this wrong, click on "the dysautonomias" and then paf will be listed as a subcategory ... I'm sorry, but I don't have time this morning to double check! ) What's tricky, tho, is that the page listed on your computer screen doesn't match the actual page of the book. You have to just scroll, keeping an eye on the book pages to find what you're looking for. Good luck!

I too agree w/Morgan--antibiotics are prescribed before dental work if you have been diagnosed with a heart condition like mitral valve prolapse (there's a one in a million chance you'd need them anyway, but you--and your dentist--would hate to have you be that one!) Dysautonomia/POTS is not a heart condition that would warrant antibiotics before dentistry. I was diagnosed by a cardiologist because I wanted to know why my heart was racing upwards of 140 all the time (while awake). His team ordered the autonomic nervous system testing after I went through a series of other cardiac tests to rule out other problems. I saw my dentist in the middle of my testing and we decided to wait until I had a diagnosis before proceeding with treatment. Once we learned it was POTS and nothing cardiac, we went forward w/out antibiotics. Welcome to the Forum; this is a great place to find information, advice, and friendship.

Hi, there. I recommend you do a search on the forum for "compression hose" -- it's a topic that comes up a lot...almost everyone who wears them (including me, 30-40 thigh high) loves them and couldn't get through the day w/out them. Good luck!

My heart pounds incredibly fast and it feels like there's fire running in my veins if I have even a sip of alcohol. I hope you're feeling better now and recovery from this episode didn't take too long! Did getting rehydrated help?

The difference may lie in the physiological processes--what's actually going on inside the body--and not in the symptoms. Have you checked out the handbook on the NDRF.org Web site? If not, go to the ndrf.org home page, click on reference, and then download the pdf version of it (unless you want to order and pay for a hard copy of the book). You'll find excellent descriptions of all the dysautonomias there.

I'll answer for Ernie in case she doesn't see your question--I believe she's referring to Primary Care Provider. Funny, when I read her reply, I thought you'd ask: What's a poor man's tilt? Take care, m

Exercise intolerance is a common POTS symptom. If you were talking about your health history and s/he were trying to assess how long you've been suffering from POTS symptoms, s/he would likely have asked if you had that particular symptom growing up. (I remember that this topic was part of my initial interview with a cardiologist; I've had exercise intolerance all my life, or starting in my teens--tho I wasn't dianosed for 30-some years.)

If you want to know more about what the "orphan list" is--and what legislation was signed, check this out: http://www.rarediseases.org/washington/bush_signs I did a google search for "orphan diseases" and "President Bush"--this link was first in a long list of hits; you can replicate that search and read even more. This link comes from the National Organization of Rare Disorders ... and when I searched for "dysautonomia," I found only "familial dysautonomia" which is apparently different from what (I believe) any of the people on this forum suffer from--at least on the basis of what people write about themselves. Not to say, however, that symptoms of dysautonomia don't or can't run in families. They sure seem to--but what is defined in medicine as "familial dysautonomia" is something else entirely. On the basis of what I've now read, I wouldn't say POTS ever was on an orphan list. But I could be wrong... Take care, all. Hope today's a good day for you.

Morgan, I'm disappointed for you and with you. I'm so sorry... Were you trying to get into a particular study at Vanderbilt? Or were you just trying to get an appointment to see a physician there?

I only have time now for a quick reply, but I just wanted to tell you that I've been diagnosed with POTS and I too have the numbness in my hands and arms during the night--and I'm NOT sleeping funny, lying on them, etc. Sometimes they'll just go "dead" -- and the feeling (or lack thereof) will wake me up. It's not the same feeling as a hand "falling asleep" during the day, with tingles etc. It's pure numbness--same as you describe. I do believe it's a symptom of POTS; I've shared it with my cardiologist, neurologist--people are rather nonplussed--perhaps because it's rather benign. Very weird, very scary ... but not in itself dangerous. I have other symptoms you describe as well (e.g., shortness of breath etc--my heartrate is much much higher than yours; I don't know my bp) and many many others on this board suffer these as well. I recommend you read past posts on this board--go beyond the last thirty days or whatever your default setting is--there's great information and support available to you here. Also read up on POTS on the home page, what helps and what to avoid, and check out the NDRF.org site as well. You're not dying; in the words of John Kerry and all last night, hope is on the way! Speed the day by drinking 2.5 liters of water today, eat a ton of salt (3-5 grams--salt tablets may help you with that), and get some 30-40 compression hose at a medical supply store. I hope you can find a new doctor who knows about POTS treatments soon! I think others here live out East and can help with that. Best to you, merrill

Are you on antibiotics yet for the bacterial infections you mentioned? I hope so! You'll be amazed at how much better you can feel with just a few doses. That and time and rest (not to mention plenty of fluids--try gatorade to get your electrolytes back in balance and to give you some energy) should cure the infections. I sure hope you can be back on your feet soon. And when you are (and please, trust that you will be!), definitely wear the compression hose! Why not order a pair now so they'll be waiting for you when you're ready to be up and around? Take care--I hope you feel MUCH better soon!

Gravity's a powerful force, and blood does pool in the chest and abdomen when you're lying down (during sleep etc.) This is completely normal, and it happens to everyone. Blood doesn't pool in the legs too much when lying down--and compression hose wouldn't help with circulation. I was told not to wear them during the night, though like Blackwolf, I do wear them if I'm just lying down for a short rest. Compression hose helps the leg veins to constrict when you're up and walking around; this helps keep the blood flowing upward and back to the heart and brain. I remember my cardiologist talking about what percentage of total blood volume pools during the night, but I can't remember the numbers. I did a quick google search with some key terms and came up with far too many hits to read... but here's one that had some information you may find interesting: http://greenfield.fortunecity.com/rattler/46/veins.htm Radha, do you have POTS? Why are you bedridden? PS I wear Mediven brand and I've bought them at a medical supply store and through ameswalker.com. With a prescription, they're covered by insurance.

I'd also recommend that you bring with you a portable CD player and some favorite CDs--the kind of music you can sing along to in your head. Better still would be a meditation CD--there's nothing like visualization/relaxation to focus your mind and keep you calm. A fun magazine, an absorbing novel...bring things to do and listen to so you keep your mind focused on something else. I've posted elsewhere about my good/normal experiences flying; for me, coping with anxiety is the most challenging part, but these tips definitely have helped me in the past. I don't think I'd ever opt for 65 hours driving to avoid a flight. (THat would be much more dangerous, not to mention harmful to my health!)

Don't be sad--she'll be back online soon! Watch this space! (Jess, hope the move went well!) m

Hi -- I hope you're able to get in to see a cardiologist soon, especially one with an interest in--and knowledge about--the autonomic nervous system. It would be helpful if they could put you on a 24-hour holter monitor so your irregular rhythms could be tracked throughout the day. You should also get a tilt table test, which is used to diagnose POTS. Everyone's suggestions are right on the money -- and I'd recommend reading as much as you can here and on the ndrf.org web site as well so you become as educated as you can before your next doctor's visit. As for your diet, are you able to track which foods trigger the worst symptoms for you? Or is it the same no matter what you eat--or how much? People here tend to feel better with fewer carbs (esp. pasta and sweets) and foods with lower glycemic loads (eat a piece of fruit instead of drinking juice). Until you get to see a doctor who can try you on some of the various medications that may help you (and you can read about them--and other people's experiences with them--on this site), you may find that wearing compression hose, 3-5 grams of salt daily (salt tablets may help you achieve this goal--I take them) and 2 liters of fluid may help to some extent. Good luck; I hope you get some relief soon. (PS I sometimes have the symptoms you describe after eating...but it depends on what it is.)

I just did a quick google search for garlic and "blood pressure" and got a gazillion hits. This quote is from the first link: Clinical bottom line: Based on trials of generally moderate to poor quality, garlic supplement of 600-900 mg/day for one to three months is associated with a modest reduction in systolic and diastolic blood pressure. This reduction is likely to be clinically relevant. Not all patients studied were hypertensive, and more information is required to assess the effect of garlic specifically in hypertensives, and to establish a dose-response relationship and the duration of benefit. You can read a lot more on this topic ... I don't know whether we're talkin' major garlic supplements or using a clove in your spaghetti sauce ... I suppose it would depend on how sensitive your system is. Interesting topic!

Vanderbilt is one of the top research institutions for dysautonomia -- Dr. Robertson is there. You can do some research on their Web site too; I've not checked it out myself, but others who post on this board have done so. I'd get her to Vanderbilt ASAP. (PS is it really the autoimmune center you'd want? I wouldn't think so...) Good luck!

Hi T&L's mom. .. You raise a lot of interesting questions. Since you asked, let me offer my opinion in response. First, I'm glad to hear you got some validation that the test was imperfectly done. You didn't say how your doctor interpreted the results of the test, however; I think we only know from your earlier posts what the nurses had to say. I imagine that some information may have been gleaned from the test. I'm curious if you have more information about that. However, I don't know why he's pushing the NCS diagnosis; from what I've read about that condition, it doesn't sound right to me either. But you'll have to do more research and more talking with perhaps other physicians to know for sure. (Have you checked out the ndrf.com Web site? Click reference and download their book; it's terrific.) Anyway, I understand your trepidation about repeating the test at the same place; I'd feel the same way, and I probably wouldn't do it. I might investigate how much it would cost at the other hospital--or whether I could get my insurance company to cover it, given the circumstances. I probably wouldn't bother going through it all again if I didn't feel I could afford the expense and my insurance wouldn't pay. You seem to understand a lot about what happens to your heart rate when you rise, when you walk, etc. without your beta blockers. Your symptoms sound very much like my symptoms, and I've been diagnosed with POTS. I don't take my blood pressure; I don't have a clue what it does day to day, hour to hour, position to position. I only know sometimes I feel like crap and sometimes I don't. When I do, I take certain measures and then I feel better. I don't think you've mentioned in your posts whether you do any of the non-pharmacalogical treatments for your condition--the most common, which you can read a lot about on this site, are drinking 2 1/2 liters of water (or electrolyte drinks help a lot) a day, three to five grams of salt a day (1 teaspoon = 2.4 grams), and wearing high compression hose, thigh-highs or to the waist. If you're not doing these things along with your beta blockers, you may want to start. YOu may also want to inquire about taking midodrine or florinef along with the BB. Some people take these meds in combination, some don't. (Those other meds help with venous constriction and blood pooling, which is why your heart is beating faster to compensate.) The book you wrote about sounds fascinating, and I will check it out and probably buy. I absolutely believe that biofeedback and meditation can help, though I've yet to pursue those alternative treatments. I will say, however, that the neurologist who read my recent sleep study wants to me to join a study ... do a whole bunch of autonomic nervous system tests and then teach me to meditate in a certain way and then a few months later test me again. She strongly believes such action can affect our pots symptoms--she kept telling me how much pots patients will benefit when she gets her article published. I will probably do it in the next few months. By the way, I don't at all think that your doctor is "blowing you off" or that he thinks you're a nut -- it doesn't sound that way to me at all. I think that's everything -- take care! Merrill

I just thought I'd add this: Dr. Robertson, leading dysautonomia research physician at Vanderbilt, told me that 25% of completely normal healthy people pass out when they are on a 70 degree tilt table test. Clearly some people with POTS and/or NCS will also pass out on a tilt table ... but others with these conditions will not. Whether you do or don't pass out is not diagnostic! Those nurses should not have said your test was Negative!!! Ridiculous! (Nor should they have said passing out = a postive result for NCS or pots, especially since 1 in 4 healthy people pass out. Sheesh!) I was tilted for 10 minutes (the length of time I've read is appropriate for diagnosing pots--I'm confused about why you had to stand/tilt there for so long!) and during that time, heart rate and bp were recorded every minute or 2. I agree that 5 minutes sound way too long. I've also read in medical journal articles that to diagnose pots, the heart rate must go up 30 beats per minute or more. It's more about the hr than the bp, because many people with pots do not have blood pressure swings--even though they have blood pooling in the legs and tachycardia and other symptoms of autonomic nervous system malfunction. Also, I was completely strapped in as well; I don't recall that I could have moved anything, including my arms. I struggled to shift my feet a little because I was so uncomfortable...I didn't pass out, but I was lightheaded and woozy and frankly, never felt so strange in my entire life. (My hr went up 40 beats.) Also, if your 24-hour urine tests have been coming back normal, then I don't think you can have the adrenal tumor described. Were you taking beta blockers along with any other meds like midodrine? Or just the blockers? It sounds like they may want to make some adjustments to your medications... Anyway, good luck--I hope you get some answers soon and that your doctor is sympathetic to your frustrating test experience.

Where do you live? Have you already looked at this list? http://potsplace.com/physicians.htm Another leading physician on the clinical side is Dr. Low at the Mayo Clinic in Rochester, MN and on the research side, Dr. Robertson at Vanderbilt in Nashville, TN. Best, Merrill

Someone in my family suffers from this; the condition is called Benign Paroxysmal Positional Vertigo (BPPV). Dizziness is thought to be due to debris which has collected within a part of the inner ear. This debris can be thought of as "ear rocks", although the formal name is "otoconia". http://www.neuroanatomy.wisc.edu/selflearn/BPPV.htm I think you see a hearing specialist for diagnosis; I'm not positive though. You neurologist should also be able to help... Of course, we don't know what's behind your right-sided dizziness, Sue, but it's just a possibility...

Traveling by train may be the way to go--you'll be heading into the higher elevations over a period of time (not suddenly and all at once, as in airplane travel) ... Your body will have extra time to adjust to the higher elevations -- and it will happen incrementally! I agree with Katherine--take your time, don't try anything too strenuous in the first day or two, and hopefully you'll adjust just fine. (Who needs hospitals anyway; they never help much, right?) That clean mountain air and beatiful scenery will be very healing, I think. Relax and have fun! Merrill

Thanks, Katherine ... nice post! And so glad to hear you had a postive traveling experience and that you were able to do all that you wanted to do on your trip! I too have positive flight experiences; I've never suffered additionally during the flight or afterwards (especially now, with adequate hydration & compression hose etc)... I suppose the only thing is the usual-and-customary pre-trip jitters that for me can affect my sleep and hr etc. But no biggie, and certainly nothing that would make me choose not to fly. Cheers, merrill