Tachy Phlegming

I got fludrocortisone scrip from my primary care doc from simple Orthostatic Hypotension test and he even mumbled something about an acetylcholine thing (so I assume he was contemplating Mestinon)... I imagine you are hoping for more or different meds than that but it could be a start for you (if you hunt for a compliant GP/Internist). So wait, would he have given you what he was mumbling about? I want a mumbling doctor!!! Actually, Mestinon is one thing I think would help me immeasurably. I, uh, asked for Nicotine spray. (I am writing in my sleep, I am not really admitting this online when I haven't quite admitted it to myself). Does choline work at all? I sort of wondered about that. I have to take sudafed. I can't eat when my nose is stuffed and it was really damaged irreparably when I was super sick with this for a lot of years.

The Doctor who is managing my meds is in Chicago. He wrote a letter to take to my PCP that I need to maintain these Meds. Ouch. I'm slightly worried Stanford won't agree (even though I feel 60% better ON the medications). They asked when I made the appointment what I was on and said my meds are fairly standard for my POTS diagnosis. So I hope they don't want to change too much, too fast. I guess I will say this to them. I need to get back to work so we can't do a ton of changes at once. Small steps, please! Ouch, ouch, ouch! Everyone wanted to stick me with a Physician's Assistant, even when I tried to explain I'm really a case that requires and MD If you like what you are on, would a Physician's Assistant give you a hard time or not give you the same meds? What would happen/does happen with them? The doctors at Stanfrod, from my experience in CA, are the best you'll find in this area. I really have an extremely big problem with waiting until February with no treatment. Is there a way to get in earlier for a quickie appointment? (like 10 minutes) I am not looking for amazing specialization. I want very basic. But basic does include writing a diagnosis and a couple of meds for my bowels and bladder.

Why not Stanford? I'm sick and want treatment -- now, not in February. It's been a lot of years. I don't think I should have to wait so much longer while my various organs overwork themselves to death (some of them are really not doing too well) and while the rest of me can't function. I know what I have and know what medications I want. That means no work at all for a nice doctor (unless he actually wants to look something up -- but I am beyond caring whether someone does that). I might want to go to Stanford eventually but want some help faster. If any Cardio could deal with that (and by deal with that, I just mean, look at my heartrate, write down a diagnosis, and give me a few obvious meds), I'd be thrilled ... I've heard that before. I'm having a philosophical issue figuring out how much I can trust a receptionist or other flunky who says something like that. I've trusted it twice and the trust was misplaced. Thank you for reporting your experience Cat Lady. It was very helpful. Maybe I should take a trip to Chicago. By the by, do you have a doctor who manages your meds before you get to go to Stanford?

Hi there, I am trying to find a doctor who will more precisely diagnose me in CA. I would prefer not to go to Stanford. Does anyone know of a doctor in CA who treats patients with dysautonomia and/or who could make a diagnosis? Does anyone know of a doctor like this at UCSF? I could go to a doctor either in Northern or Southern CA. Still, Tachy (120 bpm today! )

I am trying to see what my doctor might say to me, why I might have to go through waiting more time, and making myself sicker instead of just getting treatments. I am thinking my doctor may very well say what you are saying and I want to know a little more about the theory given some of my concerns below. I am frustrated regarding my own situation right now (for some the below reasons) so forgive me for giving you a mildly hard time based on my experience and what I will need to be asking for myself. --------- You wrote about electrolyte imbalances and arrythmias ... When I went into the emergency room unable to breathe, eat, or drink and with hypokalemia, I was told to go home and eat a banana and drink some orange juice. After that experience, I can't unlearn that emergency rooms aren't for electrolyte imbalances. Recently, when I had hypokalemia and an abnormal EKG while preparing for a sigmoidoscopy, my doctor called and told me to go to the emergency room. I missed the call but when I got it days later, I thought they were joking. I knew what the emergency room would have said anyway -- Eat a banana. I think... Am I wrong? The only time I even started to wonder whether maybe my levels were off more than the times they happened to be picked up by the labs was when I started reading posts on this forum. But that would mean at a minimum that I should be monitored more regularly and I can't imagine even suggesting that to my doctor. So I have had the electrolyte imbalances and probably heart arrythmias -- probably for long stretches on end. I always thought my brain was getting damaged when I was sick, but nobody mentioned it or cared. If DDAVP does more of the same, I am not thinking it would be much different... ------------- I have not been diagnosed for a lot of years. I now have tests I need to ask for but my doctor is going to want to stop me at some point and I want the ones I think I need more than this (where I don't know the results at all). The tests I have gotten so far are telling me exactly what I have known for years. The same thing goes for this test. I think I should test positive for diabetes insipidus (sometimes -- like with everything else, I'm sure this would be variable depending on the day). But I don't see how you get to the root of the problem with a test for diabetes insipidus -- which furthermore may not be conclusive and the results of which are going to depend on the doctor interpreting them. When you add to this that a lot of people with dysautonomia have diabetes insipidus (or something which manifests the same way) and the root cause of their dysautonomia is not known (I think), I am not sure what you are finding out. Can you tell me a little more? Are people going to be finding out about head trauma, pituitary tumors, or pituitary hypoperfusion? I don't see in this case, why having a test which will make your health worse is better than seeing whether the medication works and reasoning backwards.

I'm new at this so your post was a bit upsetting. Isn't there a point at which a well-tolerated treatment known to work in patients with dysautonomia is given without diagnostic tests -- to see if it works? Like the way they seem to give out beta blockers? These "conditions" which accompany dysautonomia seem not to be entities in their own right and if they are, then maybe the fact that they all occur together in dysautonomic patients means that they are a little different or arise for a slightly different reason in these patients than in others. For that reason, I don't understand why they do the tests (unless you want them -- that wasn't clear from your post). The list of medications on this site includes DDAVP. I thought I was going to ask for it on the theory that it is well tolerated -- without taking a test. I have been given garbage medications for IBS which I didn't tolerate, antibiotics for my "subclinical" bacterial infection which wasn't an infection at all (it worked but one doctor didn't want to give me more because the third test didn't show an infection either ) ... Tell me I'm not going to go through this. At this point, I'm hardly interested in whether I have "diabetes insipidus" "intersitital cystitis" and myriad other "conditions" for which I can have tests. I see what medications work on the rest of you and I'd like my doctors to do their brilliant ex juvantibus explanations after I get the medications (the type they were planning to do after I got medications for the above conditions I didn't actually have). They give the other medications probably on the basis that most patients actually respond to them and they are harmless. I am/(was) expecting that they will give me these different medications based on the fact that I am completely different from their other patients and patients in the class I am now in use these other medications. Did you want the test? (And am I going to have to take a test to get to try this medication??)

I haven't tried gluten-free. I feel like I've tried everything- else- free and find it harder and harder to enjoy food because I can't eat what I love. I have to avoid a lot of foods because of "allergies"; foods that give me nasal or stomach upset. Then, there's the dairy, fruit, alcohol, and cereal avoidance; foods that make me urinate too often and give me pain. (Caffeine doesn't feel like it has the same effect as these foods and I can actually have a little more as long as I am off these foods) There's also the GI frequency elimination diet I am on now too: peas, beans, and large quantities of vegetables in any one day. If I do any of these, I have abnormal pain and frequency. A long time ago, I cut out caffeine and alcohol when I worried they would have an effect on whatever bizarre unknown condition I had. I gradually added them back in; one glass of alcohol could help but I couldn't have more than a glass of something a week or it felt bad. Caffeine was sort of neutral and might increase my pulse a little. Alcohol is now out again because of the urinary problem. I minimized sugars accidentally when I ate with a diabetic friend every day: I felt terrible with that. I know I don't enjoy eating a lot of bread and pasta but can't get myself to try to gluten-free diet until I know I have a bad reaction to it. I'm pretty sure I have not eaten gluten for a few days and have never noticed feeling better for it (with dairy elimination, it was a whole different story after three days). I was starting to think that alfalfa sprouts were where I would end up. I think these are the dietary staples of people with "orthorexia" who eliminate almost every food for perceived health benefits. I was really happy to find out that people with Lupus or a predisposition to Lupus shouldn't eat them. http://www.associatedcontent.com/article/2...uts.html?cat=70 Finding this out gave me renewed hope that I wasn't deliberately ignoring the one amazing superfood I had to structure my life around. (I also deduced that nobody with orthorexia has Lupus -- or maybe 10% do acquire it and then, with nothing they can eat, they develop anorexia nervosa?? ). Maybe I just need to eliminate foods here and there, maybe one day my system will settle down, and maybe, I can reintroduce a few things I have not tried in some time ... Maybe one day, I can have fried onion rings ... Hope springs eternal.

With IBS, there are no real diagnostic criteria. It's thought to be nosocomial, both acquired and diagnosed on trips to the gastroenterologist where it spreads like wildfire -- so probably not some kind of autoimmune condition. Often what you think is IBS comes from lack of treatment of an underlying condition: MDBS plays a big role in its development. So get rid of that MDBS and you will have few -- if any -- symptoms of IBS. http://en.wikipedia.org/wiki/Nosocomial_infection

I did test positive for IgMDBS antibodies. Perhaps it's genetic or perhaps caused by some environmental exposure. I think there is a correlation with POTS, though With POTS, when you have low IgMDBS antibodies and high environmental exposure, you get extremely sick. The reason this happens is that your body is not taking any compensatory measures to keep your pulse down (keeping in mind that pulse is often too high in POTS patients), your core temperature low, and your blood pressure sufficiently high. When your titers are higher, you are more resistant to MDBS. Your body is taking active measures to protect against the pathogen. (Here's an article showing how high antibody titers afford protection with another disease: http://www.ncbi.nlm.nih.gov/pubmed/16474069 ).

Any imput would be appreciated. I'm writing in only because you wrote this -- I have no experience with a desire/feeling I should be on these medications. I actually have filled a prescription for one for some physical condition (part of this syndrome) but just couldn't get myself to try it. What I usually ask myself when I think about trying a new medication are the following questions: 1. Is it pretty generally safe? If so, I usually try it for whatever is ailing me without thinking twice about trying it -- despite not liking to take medications. 2. How miserable am I? Severe physical agony will get me to weigh the benefits of a drug I think could be dangerous. Sometimes severe physical agony will get me through the five seconds I need to swallow a pill without thinking about possible side effects. I think you are taking the right approach. I think research is a good idea. If you want to try to find mental excuses not to take it, my suggestions (keeping in mind that I really don't have enough experience to know if this will work) are: 1. Find something you love to do and just do it to distract yourself. 2. Think of taking the dangerous drug as something which will cause you to be depressed in and of itself. Then, think how happy you are for not having to take it.

I'm tempted to just ask that the doc give me the blood test to prove I am a hypochondriac. I think that this is a very important test to request if there is a suspicion of hypochondria. I'll have to remember to ask for this if it should be necessary. I don't remember from my reading but I think that if there are enough other odd and fluctuating blood abnormalities (as in Cat Lady's case and as a lot of people on here experience), the printout they send should be negative for hypochondria. I don't understand why high/low blood pressure and high/low pulse aren't also used for the evaluation. They always take those but then, it's like they're ignored (I think the underlying theory is that abnormal vital signs only indicate diseases which have an indirect effect on vital signs, not a disease which directly influences them-- if that makes any sense). In fact though, regardless of their import in showing the seriousness only of diseases which don't directly influence vital signs, vitals are really an excellent diagnostic tool to rule out hypochondria.

I'm not convinced that your theory is blown quite yet (so maybe people should keep reporting!!). It's just that if we see a pattern, it has to be interpreted carefully, we may have to account for some reporting bias, and we have to look at other research to see the significance of anything we find. So far, we have a fair amount of jaundice and some incidence of premature birth.

Two weeks premature, jaundiced. Here are links to some related research: http://sciencelinks.jp/j-east/article/2003...803A0578209.php http://books.google.com/books?id=QsgZ_CitO...;q=&f=false http://www.iop.org/EJ/abstract/0967-3334/30/2/008 It seemed from the size of the forum and the amount of people who were, that there may be a connection. I don't understand the connection you are trying to establish. Are you saying that this forum is so large, that all or most of the people born prematurely in the world have a tendency towards this condition? Are you saying that you saw a lot of posts regarding prematurity and the forum is so large that you think everyone born prematurely may well have a tendency towards autonomic dysfunction? Some people on here have had some symptoms since childhood and others seemed to develop problems after infection or pregnancy. Others have genetic conditions which may predispose them to ANS dysfunction. You probably mostly want to know about people who have always had symptoms and who don't have, e.g., EDS (or alternatively, it may be worth knowing if everyone with EDS was born prematurely -- because then, people born prematurely and with ANS dysfunction may have undiagnosed EDS) I think there was another thread on this by the way.

When I went for dental work, I had epinephrine with my anesthesia. I had asked only about the anesthetic because I thought I could have a reaction to it. Little did I realize, other tricks were up the dentist's sleeve. I didn't realize the dentist would use epinephrine. My heart went into racing mode and I was up for the count. I had to get up and walk around while my heart raced. Thinking that my problem was with the epinephrine, when I went for turbinate reduction, I asked that no epinephrine be used. The doctor put tissues with anesthetic in my nose and when he took them out after 10 minutes, I felt faint. I told him not to inject more as he planned to do. He asked if I still wanted the procedure and I told him I did, that as long as I felt so awful, he should do as much as he could. So he did one pass in one nostril. The second one would have been painful so he didn't. But my nose was the least of my concerns at that point. My mouth started to get numb and my hands got numb. I wanted to be down for the count. I didn't get to go there because this doctor was sitting at my side and telling me to breathe more slowly. Happily, I was so focused on remaining conscious that I had no idea what he was thinking or why he was saying what he was. All I could think was that if I listened to him, I would black out. His secretary called to cancel my follow-up appointment because he was sick. She said they'd call to reschedule. They haven't yet. I am wondering why. So to echo the above (but with the weird experience to back it up), if anybody has any idea what I should do or ask for next time I need local anesthesia, do tell.

I don't think this person's heart is in the wrong place. He has been improving. He has to get used to doing the trash and some more kitchen cleaning. I just think there is a way to do that. I think Erik's second paragraph got it right. I get the impression that this person doesn't have experience and doesn't have financial resources. I think there are a lot of people in college like that. Most probably aren't suited for apartment living at that point but they may yet be quality people. Sophia, sorry about that. Maybe we come from different experiences. I didn't realize you lived in 78 degrees with high dew points and thought you had more exacting standards than I. While I may seem to stick around too long, in fact, I could not be where you are and have left physical situations like that. Probably because of my extremely low tolerance to certain weather conditions, I feel that I have to really compromise in many other areas and I do so. Moreover, I find it difficult to make the distinction you find so clear. My friends and family repeated at me what my doctors said precisely because my doctors said it; so, even if I could choose friends and family, what they said and did was premised on something about which I had no choice. I have no reason to believe any other friend would have behaved any differently. It's hard to gauge where Elfie fits in these patterns but it seems that all of us end up making decisions according to what we can tolerate physically and how best to maintain school or career expectations along with a social life. I expect that she will end up making the decision which most enhances her life at this juncture.

My concern for Elfie is really to maximize her physical comfort and make sure she doesn't end a relationship because of a disease. If she ends up in her own apartment, is she going to be better able to afford air conditioning? Does she have unlimmited financial resources? Would she be with this person if she were healthy and does she have to give him up just because of illness? Will she be better off being with this person because she is ill and can't do everything herself? I completely disagree with some of the other comments. I love myself and have extremely high standards which at this point have been fulfilled (I live under 70 degrees most of the year). This illness gets terrible reactions from a lot of people and Elfie's beau sounds ok by comparison. Going from person to person who "abuses" you is par for the course. Often, well-meaning people have to be convinced to do the right thing by us. That takes time. Even think about doctors who are supposed to help people. People on here went to them for help repeatedly are and, in my view, got abuse. They were told that they had mental illness when they don't have it. They were locked up, told they had Munchausen syndrome, conversion disorder, and given Risperidone and Haldol for insisting they were sick. They had to keep going back for more "abuse" in order to try to function physically. You can't really hang on to conventional psychological wisdom when just existing in "normal" conditions for us entails suffering. I am suggesting a balanced way to deal with it. I have found that my way works quite well without books or therapy (eventually). The alternatives can be worse especially if you don't have the financial wherewithal to get exactly what you need.

I have never known healthy people who can get a handle on how I have to live right from when I tell them. They hear that I can't have heat or tolerate certain smells. They don't understand that I have to refuse to go to hot places all the time. It's happened with romantic interests and with my parents. My point is just that right now, the person you are contemplating sending on his way may be replaced by someone or by conditions only marginally better. I have found the lifestyle and mental considerations of physically healthy people as difficult and ridiculous as they have found mine and I have also found finding decent living conditions extremely difficult to arrange. Compared to the people on this forum, healthy people seem like they are from a different planet. The psychology of physically healthy people doesn't allow them to understand how people who tell them they are sick (yet appear normal) can possibly have such striking physiological differences as to make a hot shower or stairs unworkable (ignoring for a moment this guy's delight in salmonella-infected cockroach pets who travel around with little fiberglass backpacks). I have found that physically sick people with similar needs or complementary ones are a real dream -- but it's impossible to have a normal life with them and it ends up being unworkable. I think the practical considerations you are dealing with are just hard and I don't like the blanket approach everyone else on here is recommending for you. I don't know how attracted you are to this person but if you are in love with him, you might think of still dating him. I do agree that if you absolutely can't live in these conditions, move elsewhere now, but I wouldn't write him off so easily. I have had to do things as drastic as not living with people I wanted to live with, before people started to understand. It has been costly. I would have liked to find ways around these situations but did whatever I could to minimize effects on other people -- but still incurred some social costs for leaving hot places.

I think instead of the weather center, a doctor should employ a reliable 5-year old to accompany us from where we feel ok to where we feel sick to write down barometric pressure, temperature, and relative humidity. If we are unaffected by location but mostly just affected by position, the 5-year old could record that. Or flying doctors could record these measurements if a patient risks flying and a doctor happens to be on the plane. For some, this would be a better diagnostic tool than a TTT. The conditions of the TTT are artificial (not to mention expensive). As far as low pressure, these are some of the usual considerations: http://www.h2opaddle.co.uk/documents/WHO_f...o_fly_chap2.pdf The effects of space travel for someone with this seem hard to gauge: http://www.thefreelibrary.com/Standing+to+...ting-a088582292

That sounds like an impossible situation, either way. If you don't do it, I expect you will feel guilty. If you do, you'll be itching (with a high heartrate from climbing stairs) while eating fried roaches with salmonella sauce prepared by yours truly (when you're not out late wishing you were home to splinter yourself on the desk, faint in the shower and then go to bed to feel those heated kicks in the night). It sounds like a hard call. Physical discomfort can take priority over love and things you could ignore if you weren't sick. On the other hand, you should think through what it would be like living in a different arrangement before deciding. I guess I would still think about asking the landlord if you could find another tenant for the place and then be released if that is at all possible. Despite some of the unpleasantness of living with him, it sounded like your real issue was with the place he chose as opposed to his cooking talent and night wrestling activities.

I recently had a weird smell in my private parts (along with frequency and urgency problems). It wasn't so foul as odd. I asked the urologist about it. He had no idea what it was from and it seemed he had never heard of anything like that. People might start to avoid you if you smell like buttered popcorn; there was recently news about how harmful it is to breathe that smell all the time. You might want to see if you can get your body to smell like something else. http://www.washingtonpost.com/wp-dyn/conte...7050601089.html

It's that much harder to find the perfect person when you're sick. I don't think you should necessarily rule this person out. You need to figure out what lifestyle accommodations you absolutely need and what you can do without. You also have to be able to discuss these things in a logical fashion. Here are some ideas: The stairs and the shower part are horrendous given that you can't tolerate them. Can you guys get out of the lease by telling the person that your boyfriend didn't realize how this would impact your disability? You really should try to do that. If you think you have to do something dangerous for a bit and then he will move out with you -- and you can deal with that -- that could be ok. I think everyone on this forum has been forced into dangerous situations for these types of stupid reasons. Apparently, this way of life is so hard to understand that nobody healthy amongst family and friends gets it until they see you suffer excruciating agony (some don't get it even then, but this guy sounds trainable). (The only pretty good way around this dangerousness is to be with people who have terrible health problems; they usually do not need much explanation.) If you absolutely can't live with stairs or that shower for any length of time, you just can't live with him for now. If that is the case, he and you should both realize that being alone for now is going to be more expensive for both of you. If you love him and there is any way for you to be with him, in a different place or in that place, it may be better than your alternative. As far as everything apart from the stairs and the shower -- these are things you have to learn how to divide properly so that neither of you resents the other. Your principles which have nothing to do with your health -- this preoccupation with cleanliness (except as impacts your health as detailed below) and this interest in who supports whom or takes avantage of whom has got to go. It's more important to have someone you love who loves you and will be there for you. When you're sick, you don't want to hear about what he has to do for you. You can also afford to thank him. I somehow don't believe that he would refuse to do dishes when a bunch of them pile up. I think you can wait for that. If dirty dishes are so horrible to you from an esthetic point of view that it must be done right after a meal, I think you should make a supreme effort to take care of them yourself. As far as finances, I think you'll be better off paying what you need for your disability yourself if you possibly can (if he can deal with the freezing cold, he's a keeper). Then, have him take care of more normal things he will not resent. If you can pay utilities, do it. Now, on the other side -- he has to buy his food -- and probably yours too because you eat less -- and he has to buy and bring up your water. He has to prepare his own food, and you should probably do yours when you can. If and when he cooks for you, he has to adhere to hygienic practices. Wake him up when he is violent. Tell him to sand the desk and build you a proper chair or get a high chair ...

i had to move from the east to west coast because i was so horribly affected. i live in CA now. the humidity usually increases my hr a lot. i just know that i am freakishly sensitive to it. so much so that i refuse to visit my family on the east coast because i truly believe that i could die my symptoms become so intense. which is really just sad, but i can't do it. I am exactly the same. But then, there is something on this forum I don't understand. Most of the people on here write about their heat sensitivity -- and then they live in all these places where I am pretty sure I would not be able to survive -- I know some have moved but I can't understand why there is not a whole dysautonomia community on the West Coast. Can anyone explain how you can live in these other places and not die -- or are the two (or few [we'll see who else responds]) of us just those who suffer the worst of all of you regarding this feature of the disease -- just the way some people on here faint constantly and others don't?

I had bad GI pain when I ate with a stuffed nose. I got relief from oxymetazoline hydrochloride and pseudoephedrine both of which I discovered only years after this bad pain eating. Most probably would not recommend the oxymetazoline hydrochloride because it is said to increase blood pressure. I've also heard that the effect of the oxymetazoline hydrochloride is on the nasal passages is similar to cocaine. Nonetheless, I thought and still think that the daily GI pain I had from a stuffed nose was more dangerous than the remedy I found. The fact that I couldn't get an explanation from anyone as to why my nose had to be clear for me not to have GI pain after eating did not enhance my confidence in ridiculous comments about cocaine. These were people who just repeated something someone told them and obviously looked for the easiest explanation for any phenomenon whether or not it was correct. Although these medicines can by themselves increase heart rate, some of you may find your heart rate increased more by the stuffiness; mostly it would depend on what your worst symptoms are at the time you are trying to figure out what to do.

I do not think that the reason I get really sick from onions has to do with its nitrate content. There are other vegetables which I believe have greater concentrations and amounts of nitrate and I am fine with those. I imagine other people on here are fine with those other vegetables as well. (Google p. 100 of Advances in Agronomy By Arthur Geoffrey Norman). Can you think of a different reason people with dysautonomia could have a problem with onions?

How about Fiels-Lijk-Uhrdieing Syndrome after the men who first recognized the constellation of symptoms of patients with dysautonomia? Or TH(H)IPP-G(I)D Syndrome? (Tachycardia, Hyperadrenergism, Heat Intolerance, Photophobia [visual disturbances], Polyuria, Gastritis [or GI involvement], Dyspnea). Tachycardia is mentioned first, it is associated with a mechanism (hyperadrenergism), and the acronym refers to other organs the disease affects. Those nomenclatural features would make the condition -- and its signs and symptoms -- hard to forget.