Tachy Phlegming

I thought they considered or tested everyone for pheochromocytoma before months or years later diagnosing them with dysautonomia. Isn't pheochromocytoma more common?

I don't love writing responses to these threads because there is enough variability in peoples' symptoms that what works for some people really doesn't for others. But I'm responding because at my worst, I have been unable to sit or lie down at all because I couldn't breathe. I'm sure standing just kept my heart rate high (which worsened my breathing) but I had no way to get out of that vicious cycle. Do you have any idea what trigger got you this sick in the first place? You'll need to avoid it. Are you heating the place where you live? If so, is that making you sicker? You might try the bag and also a fan. I guess also drink a lot to get your heart rate down but when I was in that bad shape, I couldn't get my heart rate down no matter how much water I had after a few weeks. (My heart rate even went up when I ingested anything). If I had that now, I'd use nicotine and I'm imagining I could breathe better (depending on whether I still had exposure to what got me sick in the first place -- if I did have ongoing exposure, no medication would make a difference). I know what I look like in that state. I had to bring someone to my doctor's appointments to tell them that physiological factors were causing that delightful look of severe distress we can't avoid. When I didn't bring someone, I was exposed to unbelievable wrath and disgust. If they know what you have, it's a little surprising that they are behaving that way... I don't know about the crying and the low-grade fever but if they think they've ruled out everything else, it sounds like other people on here have had those symptoms. You might tell your family to just ignore whatever symptoms make them feel uncomfortable. It may take some time (a long time) for the symptoms to calm down. You can at least tell them to understand that whatever makes you sound like that is part of a physical disease and that as of now, nobody has figured out the right treatment so you have to remain in that state. As far as meds, use what works and uh, well, I wouldn't use what doesn't work ... but you can ask your doctor. Did you get worse after starting any of the meds in particular?

You might try going there for a week soon (maybe this week if you already have some days off) -- and first seeing whether you react to the heating (several hours or a day or two) and elevation. If you are ok from the heating and elevation, you can try a very small dose of the medication while you are there, taking a little more every time you take it until (and unless) you get a reaction. If you start getting sick when you are home, you can go back right away and know what to do long term. If you have a great week, implement the go-home plan. If you are too concerned about killing this semester by doing a one week experiment, you might want to just bag the whole idea of moving home long term and try to convince a friend (or latest boyfriend) to stay with you through the medication experiment. If you're very sick now, what going home and getting sicker will do to your career is far worse than a bad program. You may just want to try to supplement the program with anything you can find where you will be in an environment you can tolerate. Ultimately, you may want to look for people with similar medical problems (or a really nice boyfriend) with whom to live. ------------- Nothing wrong in asking for help when you really need it. I remember an exchange with the nicest member of my family (all of whom are known to be rather nice and who did everything they could to prepare for my return home when I was really sick). Tachy: "I need the air conditioning on right now. I will die without air conditioning now." Nicest (but freezing cold) family member: "If you're going to die, die already."

What planet are these aliens from? I think we have to ask them whether they don't see blood pressure drops all the time from whatever they are doing (they don't but as long as they pretend we have anxiety like everyone else, we're entitled to come from a place where we think everyone gets low blood pressure from a shot and say something just as idiotic back to them), explain the mechanism (don't worry if you don't know the exact science of it, they obviously have no idea of the science of it either), and ask where they went to school (that's the gratuitous insult for the "anxiety" comment). And tell them not to be so flip with the "art" of medicine explanations. They're supposed to be professionals and know the science. If they can't deal with people with certain diseases except to engage in meaningless psychobabble about unimaginable fear of shots, people with those diseases should be separated out to go to people who know the science involved.

You might want to look a lot more on the EDS sites. When I first read about it on here, I said to myself -- no way. I had an idea about what the disease was and could never do a backbend to save myself (cartwheels were another matter, as were headstands and diving board flips). But then I saw a lot of other little things EDS patients (some of the types) have which I have and always thought were super normal, had absolutely nothing to do with any disease but were just a little quirky. Again, it takes a lot of time to believe you might have it -- but you might want to look on a lot of sites if you're otherwise not planning to check it out. (And if you find anything which makes you think you could possibly have it, you might want to be really careful about telling anyone apart from a specialist or a very trusted doctor. People will think you are off your rocker for noticing these small common things which don't make you seem ill and for associating it with a health condition. )

1. People with these (many of these) symptoms on this board are often not diagnosed with hiatal hernia. So either the symptoms are the same for hiatal hernia and these symptoms or doctors routinely misdiagnose hiatal hernia in dysautnomia patients. Giving our professional friends the benefit of the doubt, it should be the former explanation. 2. Nonetheless, it appears that a lot of people on this board are in fact diagnosed with (hiatal) hernias at some point. a. Doctors will tell you that hiatal hernias (like the "anxiety" from which they say you suffer, and every other symptom you have) are really common. Here's a statistic for the population at large. http://www.wrongdiagnosis.com/h/hiatal_hernia/stats.htm b. We don't have access to the incidence of hiatal hernia in dysautonomia patients but a good way to get a statistical feel for this in your head is by searching it here and also going to another disease forum and checking the number of hits you get in a search for hiatal hernia; patients routinely report all of their health woes. I think the incidence is probably pretty low on other fora. 3. Given 1 and 2, my thought is that what causes someone with dysuatonomia to get a hernia also causes him/her to have defective blood vessels or is otherwise connected to dysautonomia. (And not that everyone on here is walking around with undiagnosed hernias). Do the people on this board with a hernia diagnosis also have an EDS diagnosis? Have they been tested for EDS?

I think you'll give the people on here a lot to think about. http://ep.physoc.org/content/94/1/11.full.pdf http://www.ncbi.nlm.nih.gov/pubmed/3203141

Does anyone know of publications describing a relationship between these types of POTS they have carefully distinguished and/or NCS (or even "OI" which some people give as a diagnosis distinct from POTS and NCS) and underlying mitochondrial disese, Ehlers-Danlos, or viral-onset dysautonomia?

I can't get Mestinon. I have (prescription) nicotine spray as my consolation prize and recently got that herbal supplement (Huperzine A) instead of a prescription medication which my doctors are aware that I need. Right now, cancer, diabetes, and heart disease have been ruled out for me but collapsing, breathing in a manner unlike everyone I know, having food and liquids come out of my body at an alarming rate, and a constantly high heart rate are ruled in. When I felt healthy, I did things other people considered healthy (very slightly modified because I had minor symptoms in childhood). Being this sick has forced me into a lifestyle and choices I never wanted so that I can feel as good as possible. For now, nicotine goes into the bag with avoiding fiber, not having milk, onions, most fruit, and whatever other foods are "healthy" for everyone else I know, and avoiding sun and heat. Without nicotine, I have scary sleeping, wrong breathing (with the accompanying high heart rate), inability to eat a whole lot, urinary and bowel frequency (fairly recent). With it, my symptoms are lessened or much lessened depending on the symptom. Apart from breathing during the day, it helped with jerking awake at night unable to breathe. It was getting to be every night. Now, maybe it happens once a week. For what it's worth: http://chestjournal.chestpubs.org/content/...1.full.pdf+html When I stop using it for a few days, bowel problems which go away with nicotine return. For what it's worth: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2502541/ I know we all celebrate the discovery of new conditions like ulcerative colitis and Crohn's (that very elated post today was a cause for great joy ); but I have avoided instant gratification for years and want to wait on this great development. If I wanted another reason to do what I'm doing for right now, there are studies which show the risk of cancer greatly increased from colitis itself: http://www.ccfa.org/frameviewer/?url=/media/pdf/cancer.pdf (Oh no, I hope that doesn't mean no celebration for ulcerative colitis if I end up on some regimen where I get it??? )

My experience is that doctors get angry and downright hostile if they just don't like the disease you have -- and when they get angry they make up a psychiatric diagnosis out of whole cloth. Futher angering someone with a hair triggger temper by saying the above while in his care -- despite its truth-- I believe is what put some people on here into mental institutions. Now if someone else who accompanied the patient were to say that, the doctor wouldn't have any recourse. At least I've never heard of diagnosis by proxy. I think it's a dream of (many of) ours to have someone with that attitude come with us to an appointment and say just that when a doctor starts to say something which makes no sense medically (if you think you have a cognitive problem, just imagine being a doctor, not knowing medicine, and totally fogging out when your patient talks because you missed the lecture on the autonomic nervous system! ). At least remembering what you wrote may make us smile when we next encounter the nonsense and are holding our tongues. (Oops that was sticking it out, not holding it, I should watch it).

There is also a spray. The patch could irritate skin and for those who are sensitive to them, there are artificial sweeteners in all of the gums. (And one more note -- I'd need more than I could or would take for breathing problems arising from exposure to certain kinds of stimuli).

When I have difficulty breathing, I now use nicotine. When I use nicotine, I notice that 25-40 minutes later, my breathing has improved, i.e., my breathing changes from high in my chest to abdominal breathing (and I'm not sitting there taking deep breaths and feeling like I can't get a full breath). Huperzine A seems to do the same thing. I am trying to get Mestinon but haven't gotten it as yet -- so these are the two substitutes I am using in the interim. I've been sick for a long time with no remedy for this problem for years so I was happy to figure out (some months ago) that these two things would help. My understanding is that any form of nicotine will help so if you're up to it, you can try different types. (And by the way, I didn't, don't, and wouldn't use nicotine except as medication, had no idea it had any possible medical use/benefit until the last few months, and it is totally taboo in my social circles ...)

A small amount of junk food with some protein (high fat [for calories -- but the total amount of fat will still be pretty low because of the small amount of food], low fiber) as well as salt soup with rice or potatoes or noodles (rice or wheat, whatever you can tolerate). If you really need the vegetables, you can have a 2"x2" square of lettuce once or twice a day. When I was super sick, I couldn't eat anything else for months -- I was worried about eating at all, not about eating healthy. Anything "healthy" or "healthier" than the above got me worse. I was usually able to eat a McDonald's Happy meal without dressings or toppings (daily) and another small amount of soup or one slice of pizza. A lot of water may also help ...

I also had gastritis and have been asked various questions about my due date by complete strangers (who received in return for their wrong assumptions, accurate information about my medical history). Exercise that I am able to do did nothing but eliminating dairy (because a friend said it increased her urinary frequency [it did mine too]) and the new breathing remedies I am using took away some of the worst of it. But the "look" for me may be from the pooling they talk about. When I can't eat or can barely eat (at some times because of the bloating or food reactions, at others because of frequent urination), the look of the bloating goes away in one or two days (even though I can still be bloated with air). One or two days of normal calorie-eating brings it back even hours after I have eaten. If I eat all of my calories at one sitting, it tends to be more evident then. I've had times when I could not lie down at all because I could not breathe lying down (or eat).

I didn't (not even once) for about two years.

Just to clarify -- I spent a lot of time asking about my heart rate. I was told it was a symptom of anxiety even if it went from morning to night (and I couldn't possibly be thinking of anything which would keep it so high all day long). I asked in the context of what could be physically wrong to make my heart rate so high-- the answer was (again, in so many words) that it had nothing to do with the state of my physical health. The variations in my heart rate with drinking fluid was also unexplained and treated as an unimportant anomaly. And yes, the reason behind the answers I got was most of what you wrote above. (And what I wrote was tongue-in-cheek -- It wasn't confusing in the usual sense but rather in the sense that taking vitals seemed to me to be an important ritual at the doctors' office but a ritual with no possible interpretation and no real medical significance).

I've had extremely severe problems with abdominal pain and breathing which I would have described similarly. It was intolerable.

My problems are in the area of other peoples' cognition. I can say something over and over -- it is super precise, logical, and explanatory -- and then I can't get it to register in other people. After also, after I say something, I hear gibberish back. Terms that are fuzzy, confused, have multiple meanings (like "anxiety") and which don't make sense to me. I repeat what I have to say and more gibberish comes back at me. Does anyone get that? The weirdest example was with my heart rate. When I asked why it was high, I was told it was an improper question and then, also got gibberish in response to the question. Then one day when I went to get help for another problem, I was asked why it was high. I was really shocked at the question because I had been told it was an improper question for years and years and years. But of course, by then, I was so steeped in gibberish that in answer, I gave the nonsensical answer I had been given when I had asked the question (after having been told it was improper). So then I started not to understand why I couldn't ask the question and other people could and that really confused me. One of the few places I don't have these weird problems is on this board. How are you on that score Erik?

Never. Some things should not be tested. I think you've just found one. You'll probably get a sense of what is really helping as time goes on (like you'll wait a few extra hours before doing something or will forget to take something and it will or won't matter). In the interim, enjoy it.

Ramakentesh, are you suggesting that the patients they used in the study all fell into the category you delineated in this thread? It wasn't in the article yet they all got back to baseline -- at least according to the article. Could you please write out a step-by-step description of why you wrote what you did and why other categories of what they called "OI" would not have gone back to normal with CO2 rebreathing?

When I took the stress test, the technicians put on the air conditioning for me. I also poured water on my head and body before the test.

Ha Sara!!!!! There it is. All those points summed up in your experience where they have your two heart rates recorded on oxygen and without. That's why we all wonder the same thing about oxygen ... Thanks Erik. Sometimes people don't love my humor so it's nice to have a fan (helps me to breathe).

The article below would suggest that anything that causes you to have a high heart rate (orthostatic stress) could cause you to feel that you can't breathe although I've got to say, I mostly get the problem only in heat and humidity too ... http://stroke.ahajournals.org/cgi/content/full/29/9/1876 ------- I have some questions about the article. (I haven't spent too long on it so maybe I'm missing something right off the bat.) It seems to state that we get overbreathing when subjected to the limit of our orthostatic stress. But don't people without dysautonomia? http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2442822/ Or am I missing something? I mean there are a lot of big words in that first article and it sure sounds like cutting-edge research but I thought what is unique about us is that we have the problems with less orthostatic stress. Also, I need to breathe cold dry air to breathe properly. When I am covered with a blanket, my breathing is still okay as long as I'm breathing in cold dry air. I'm also ok on an airplane with a nice oxygen tank. The same phenomenon works in the people out in the real world when they have too much orthostatic stress, right? Or in the logic of the article, (administration of oxygen to them) lowers heart rate which then lets them breathe normally. They do bring oxygen to normal victims of heat stress and when airplanes lose pressure right? (Sorry, I live in my own little world where I don't get oxygen for heat stress and people think I have an emotional problem when I fly and have to ask a stewardess for an oxygen tank so I wonder about what they do for normal people). They hint in the article that people with dysautonomia should all be hanging out with an old bag instead of an oxygen tank. (CO2 rebreathing is usually accomplished with a bag for those who missed the reference). http://www.springerlink.com/content/h2130231l14262j0/ http://www.thefreedictionary.com/old+bag And I don't understand why they are mentioning panic disorder in this discussion of dyautonomia. I mean "normal" people get this when they experience orthostatic stress right?. From where I sit, I am starting to wonder whether ambulances supposed to carry paper bags for "normal" people experiencing heat stress. And a psychiatrist along for the ride so the "normal" person in the ambulance can discuss everything else but how they can't breathe and their heart rates are high. ------ As far as what I've been doing lately for the breathing problem: When I can't breathe properly, nicotine spray regulates my breathing within 40 minutes and my one-time trial of Huperzine A seemed to work too.

When I first read about it on this site, I thought 'well, at least I don't have that.' And then I read a few more things and started thinking a little more...I have some symptoms and the ruptures sound scary. Do you know whether you have it in your family history and/or whether family members had ruptures? I am getting a referral to be tested. As Maxine wrote, if you know for certain that you have it, it will be easier to make decisions regarding your medical care -- e.g., convince a doctor to refrain from a risky procedure or from giving medications you shouldn't have. And of course, if you know that you do have it, you can be monitored. Sorry to pose this macabre question Maxine but it's something we should know: Had doctors known, could they have prevented her death and if so, how? I could look it up but I might as well ask because you have the knowledge at your fingertips.

Hi Maxine, I'm responding only because so few other people are even though some of them probably know your history a little better than I. I think it's a hard call to know whether to discuss it with the EDS doctor. I think what I would do is apologize for bringing it up but you're not getting the appropriate care from other physicians and you know he can help because he understands the problems you have. If he's intelligent or nice (there's not much of a distinction when it comes to helping patients), he will understand that patients are not supposed to be apologizing for asking for help based on their rational concerns and he will go all out to try to help you get the help you need. If he becomes completely unreceptive, then you'll end up not discussing it anyway. Make it clear what tests/procedures you want done for this problem -- what are those tests and procedures that you want by the way? And what was supposed to be discussed at this visit instead of this problem which seems to be a very significant current problem? Tachy