Tachy Phlegming

I do like actual quinoa, just the grain. They mix the quinoa with corn for the pasta and I think it's a bad substitute for the real thing. But maybe it's an acquired taste. Does anyone know anything about amaranth? I think I tried it once but don't know where to get it or how you can use it. http://en.wikipedia.org/wiki/Amaranth And I guess they told you or you've read you're also supposed to avoid oats, rye, barley, and beer. You'll either feel better on the diet -- or -- you will be thrilled to go back to gluten after the diet. So one way or another, you can look forward to happier times after a months-long miserable period.

Vietnamese food is pretty good. They use rice noodles (in many thicknesses) which I usually prefer to rice. And there's Mexican. Corn tortillas aren't bad. Some of the substitutes however, are awful. There's quinoa pasta (yuck). I hope I never have to get a test for celiac (famous last words). I actually prefer the above listed (positive) suggestions to wheat but eat wheat a few times a week or even once a day depending on what other food problems I have/develop and how creative I am.

The reason I posted that was that the swaying and rocking sensation sounds unusual. I don't know if that is the only kind of dizziness you have ... They wrote that most often sufferers get it after a trip. If that's the only reason you don't think you have it, it's not necessary to get it then. Xanax is a benzodiazepine which is one of the treatments which is supposed to work for the syndrome. http://www.mddsfoundation.org/mdds_treatment.html And the other thing is, if you have it, motion (travel), may make your symptoms go away temporarily (and it sort of sounded like motion helps you). http://abcnews.go.com/Health/Story?id=2817081&page=3 Not that I'm an expert and I haven't experienced what you do -- but the swaying/rocking, the motion which helps, and the drug which helps sound a little like this ... (And sorry not to have written this out in the first post but I wanted to clarify a little more just in case it's helpful).

I've heard of the following syndrome: http://www.mddsfoundation.org/ http://www.mddsfoundation.org/MdDS_diagnosis.html http://www.mddsfoundation.org/mdds_complete_symptoms.html Did they check you for that?

Nauthiz, Dysautonomia is a physical disease. As I explain below, it can be made 1000x worse by a positive attitude. Moreover, no doctor can tell patients about the many lifestyle changes they need to make within the allotted time for doctors' visits. So I think that what you wrote is poor advice for at least some people on here. Before I became symptomatic, I was a very positive person. Even when I developed symptoms and was told to remain the way I had always been, I did so and was positive. Even with the positive attitude, I got so ill that I nearly died from this disease. And I could not do the normal things I had always done. I still believed I would get better because I was told nothing was wrong with me and it was in my head. I knew I could rectify that. But with that attitude, I got horribly horribly sick. I was unable to eat, breathe, and live in the conditions my family and friends lived in. And my life fell apart. But I was still positive! At some point, people realized I needed different food and conditions from normal people. That made things a lot better. But they still had no idea what was really wrong with me. I was still positive! But I couldn't do anything with the positive attitude. It's been a lot of years and today, having been unable to breathe, have a normal heart rate, or eat like other people -- even with the positive attitude --- and some months into knowing exactly what I have and what medications I need to treat it effectively, I cannot get them. It is that much more difficult today because when I first complained of symptoms of this illness, I could get no treatment and was told to ignore physical situations which made me ill. I have a whole history riddled with descriptions of things I can't tolerate -- all of which are described on this site --and all of which are imputed to fantasies I made up. Nobody even wrote about my wonderfully positive attitude in my medical records! Because I was never diagnosed (or treated) and left to wilt in the heat (because it was all in my head), even though I remained positive, I now need some medications you do not need. It is a struggle to get them which I think is an enhanced struggle because of the misdiagnoses. And yet, I have to focus on getting the medications (it takes an awful lot of time) because I want to breathe and have a normal heart rate. As of right now, I have appealed to four doctors with explicit descriptions of what I have and what will help. I have not gotten medications I really need. Some of the things on this forum are a real help. I had no idea I needed to drink certain things, eat certain things, and avoid certain things until several months ago. It is a lifestyle which is not described in any health magazine or by any doctor I have ever met. I have never gotten so much proper health information anywhere as I have on this forum. Had I not spent a lot of time concentrating on what is in this forum, I would have had that much more trouble eating, breathing, and being in excruciating pain the past few months. If we lived amongst people like the people on this forum, the usual health magazines would have the proper information in them. But, being that this is an illness, we have to get our health information here. That's a lot of years of misinformation some of us have to correct. Everything you wrote as advice has hurt me tremendously in the past and made me very sick. A considerably more negative and realistic attitude in the past on the part of everyone I knew would have helped me in the past to be almost completely physically healthy with few modifications of lifestyle, and reach the professional and social goals I always had in my life for today -- goals which I have not achieved and which I can no longer reach. Fairy tales and a positive attitude in the past destroyed me. Had I been diagnosed and given about ten pages of information about this disease the first time I complained of a high heart rate to a doctor, I would have almost no problems with this disease today. Given what happened to a lot of people, I think that your advice is dismissive of their hardship, the terrible plight in which they find themselves today, and the enormous amount of information they need to treat themselves now. On a positive note, I hope that in a couple of years you will send in a picture of yourself smiling in a steaming sauna designed for the healthy majority of people out there (instead of the dysautonomia spa in the ice hotel we were all dreaming about)! http://www.newluxuryitems.com/wp-content/u...otel-sweden.jpg If there's a miracle waiting to happen for most dysautonomia patients, that's one for sure! If, in that future, you can also send in a photo of one of the 100 trillion organisms in the body that will allow any of us who cannot now do so, to tolerate that hot sauna, please do so. We will go out, buy the organism, ingest it in great numbers -- and immediately abandon these forums with great big smiles on our faces. Still, Tachy

Your doctor shouldn't give you a treatment which doesn't work to replace one which does. I think you need to talk to your doctor and tell him that you must have something that will be as reliable as possible as you have children to take care of. I was not aware that children are a motivating factor for a doctor to give proper and reliable health care in cases where he would otherwise fail to provide it -- but maybe the original post was a reference to weighing the benefits and risks of continuing Norpace right now-- where you've decided that it's worth it?

To be diagnosed with POTS, you have to have a certain "je ne sais quoi." http://www.thefreedictionary.com/je+ne+sais+quoi By its very nature, that "je ne said quoi" is unknowable and indescribable. In fact, diagnosis in medicine involves very deep philosophies: http://www.springerlink.com/content/m1385r31581822u2/ http://emj.bmj.com/cgi/content/abstract/26/4/238 http://www.powells.com/biblio?isbn=9780792363224 With that in mind, it should be obvious that diagnosis does not really rely on scientific principles or highly accurate descriptions in professional journals, to wit, http://www.pubmedcentral.nih.gov/articlere...i?artid=1501099 , but rather "feelings," highly technical and sophisticated "philosophies," and possibly, "constraints," (to be described elsewhere) of your expert (or non-expert, as it were) practitioner. Do you have any other questions?

1. Awkward isn't a reason to stop going out. Nor is worry. If someone loves you and is worried about you, the idea that he should abandon you so that he will stop worrying doesn't make sense. 2. No matter what kind of stud you are dating, the fundamental thing for both of you to remember is that everyone can get a disease. Leaving you because of your illness is not going to protect this person forever from the evils in the world. Tell him he'll get used to the complaints. And make sure he knows that you complain because everyone with the condition would complain similarly. On the other hand, you shouldn't feel guilty. 3. If you can't go out or do certain things he wants to do, you can't ... that's ok. If you ever want to do something that he doesn't want to do or can't do, he will not be pressured to do it. 4. If it doesn't work out, other people with an illness are too preoccupied with their own illnesses to worry about yours ...

When I was really really sick, I had a really hard bloated area maybe right below my ribs on my left side. That was when I had real difficulty breathing and eating. I had an endoscopy and a sigmoidoscopy (they couldn't even get up because it was so painful). They found redness and they had no idea why my heart rate was so high and why I couldn't breathe and what I had. For all that, I didn't need a procedure. Although it would have been nice had someone actually been thinking instead of shoving things up my rectum and down my throat. I have recently refused a colonoscopy. I don't think it's worth the risk.

Here is a description of the relationship between an asthma inhaler and (a) beta blocker. I think it will clarify the scientific principles you are wondering about: http://www.drugs.com/drug-interactions/alb...0-1014-566.html And here is the Wikipedia description of beta blockers: http://en.wikipedia.org/wiki/Beta_blocker and beta agonists: http://en.wikipedia.org/wiki/Beta-adrenergic_agonist

I'm hoping you get your foot in the door for more work... I always thought it was "doofus." (both are used but yours is the more common variant it appears -- I don't know why I looked up the other one)

A true dufus would spell that word correctly instead of the far more sophisticated words you routinely do spell correctly. http://onlinedictionary.datasegment.com/word/dufus A night job without sun and heat (and well adapted to a weird schedule) sounds amazing. I hope it's enjoyable.

Wake up Tachy, wake up! Do not write on the forum when you are asleep! Wait, is the forum real? Can someone help me figure this out? Please? Are you just there when I am asleep or are you there when I am awake?!! ----- My nightmares got a lot more vivid when I became reallly sick with this ... and I can sometimes now wake myself up in the middle of one.

When I read that article (and at [many and] various times before that), I also felt that I might have been much better off had I been a pet seeing a vet. I'm glad to know someone else has had exactly that thought. And of course, the second part of the test was to point out your second observation ...

In a funk? Take this Continuing Medical Education Test and cheer up! (or not ... ) PART I: Qualification for This Special CME Test. 1.) Do you know what it means to be as sick as a dog? http://www.cvm.missouri.edu/neurology/Dysauton/DYSAUCVT.htm 2.) How have you enjoyed your most recent visit to the doctor? (Essay question) PART II: Case Study of Canidae (canus lupus familiaris) as Patient; Differential Diagnosis. 1.) If: a. the dog in the above article were your pet; b. you took him to the vet; and c. you told the vet he had dysautonomia, which of the following would happen: A. The vet would tell you there is nothing wrong with the dog. B. The vet would recommend treatment of the dog by a dog psychiatrist. C. The vet would look in the DSMKIX, and tell you you had Doggie Munchausen Syndrome by proxy. Your dog would be given a pilocarpine test to see whether you had poisoned him with atropine. D. The vet would tell you your dog looked like you and that your dog had sympathy pains. (Compare I) E. The vet would say that your dog had asthma, poor anal tone, photophobia, and a distended bladder. F. The vet would refer your dog to a specialist for treatment. G. The vet would tell you that nothing could be done for your dog. H. The vet would tell you that your dog needed a sleep study. I. The vet would tell you your dog had a disease of the sympathetic nervous system and prescribe bethanecol and pilocarpine. PART III: Canidae (canus lupus familiaris) as Diagnostician 1.) Do you have a dog? If you answered yes, go to question 2. If you answered no, go to question 3. 2.) Does your dog know when you are sick? http://dinet.ipbhost.com/index.php?showtopic=4474&hl= 3.) Do you have a doctor? 4.) Does your doctor know when you are sick? http://dinet.ipbhost.com/index.php?showtop...+horrible\ 5.) Who is dysautonomic man/woman?s best friend? A. Dog B. Doctor 6.) A diagnosis of dysautonomia often involves: A. 101 Dalmations. http://www.breederretriever.com/forums//showthread.php?t=29 B. 101 Doctors. http://dinet.ipbhost.com/index.php?showtop...+take+you\ PART IV: The Perils of Point Mutations in Canidae as it pertains to diagnosis of dysautonomia in Hominidae (in particular, homo sapiens). (Caveat: this section is a little esoteric and only serves to elucidate the material in Part III on a more technical level). 1.) What are the letters used in the genetic code? http://www.brooklyn.cuny.edu/bc/ahp/BioInf...eneticCode.html A. A B. C C. G D. T E. All of the letters above 2.) What is a point mutation? http://en.wikipedia.org/wiki/Point_mutation http://www.genetichealth.com/g101_changes_in_dna.shtml A. The difference (change) of one letter in the genetic code. B. What this test is about. C. Both of the above. 3.) What is the difference between a do-G and a do-C? http://en.wikipedia.org/wiki/Dog http://dictionary.reference.com/browse/doc A. One letter. B. A point mutation. C. Relative sensitivity to your low blood pressure and high heart rate. D. All of the above. 4.) How does the substitution of one base, C (cysteine) for G (guanine) affect the phenotypic expression of a do-C as compared to a do-G? See, e.g., http://www.jci.org/articles/view/26956/version/1 A. The expression of the do-C variant is bipedal and intelligent in appearance whereas the do-G variant is less intelligent in appearance (despite superior intelligence), quadrupedal, and hirsute. B. The expression of the do-C variant exhibits almost complete insensitivity to low blood pressure and high heart rate in homo sapiens whereas the do-G variant does not demonstrate such insensitivity. C. Where there is incomplete penetrance of the mutation, a do-C can be terrific. http://en.wikipedia.org/wiki/Penetrance D. All of the above. 5.) What is a do-A? http://en.wikipedia.org/wiki/Dead_on_arrival A. Another point mutation - the substitution of arginine for guanine. B. Doctorspeak for your greatest fear when you call an ambulance. C. What may happen to homo sapiens with low blood pressure and high heart rate after too many encounters with do- C variants. D. All of the above. Disclaimer: This thread is not intended to be used as medical advice. For diagnosis and treatment of dysautonomia, please consult a qualified physician. (But if none is available, a dog may monitor your health more constantly and carefully. )

The heart biopsy sounds scary enough! You are brave. Good luck in getting a negative biopsy -- and I'll hope your mom does well too. (And thanks so much for the medical info).

Did the suspicion of amyloidosis come from some other test or from the echo only? I was told I had diastolic dysfunction but I was given to believe it was meaningless and harmless. The doctor said it should be checked again in a year or so. (The same doctor made me feel like a pariah because he told me he would give me a beta blocker for my high heart rate and high blood pressure and then, as I was waiting for the prescription in the waiting room, his receptionist came out and told me he had changed his mind. That was after he told me he would check me relatively soon to see how I was doing on the beta blocker. From what my primary care doctor told me, there would be no going back to see him or ask about the diastolic dysfunction -- or anything else . [For the record, I don't look like I come from another planet].) If that means I could have amyloidosis, I don't see any way of getting this checked out for myself ...

Honestly, I think there is a need for a publication (maybe more than one), we can hand out to friends and strangers with a popular health twist. Something with pretty pink, green, and blue titles such as: Raising your blood pressure. The new high salt diet. Stand up for lying down. Keeping your heart rate under 100. Strenuous exercise can put YOU over the edge. Making sure you are never in temperatures above 70 degrees. What it does for your autonomic nervous system. Does flying make you crash? Taking your vacation in your own bed. How to explain away your exquisite body when it's just because you can't eat. When you can't breathe and it's not asthma. When 10 bathroom breaks aren't enough. Should you really go to the ER when you have the symptoms of a heart attack? Shaking awake your numb fingers in the morning. Then we need to tell our buddies that the regimens and advice in the magazine will cure whatever ails them -- after all, it works for you. Tell them your doctor has recommended high salt for you -- to keep your autonomic system "strong and healthy" (the vaguer the better) and why hasn't their doctor? ...

Please delete this. I couldn't see that my post was entered when I first clicked it.

A doctor with dysautonomia who talks to someone you bring to the waiting room sounds like a wonderful dream. I'll call there. I already had a TTT. I am wondering more about sweat tests and a test for EDS -- and I would want to try several standard medications.

Tell her that that would be amazing but that you have to know exactly what to tell the therapist to make it go away. (Having her tell you what the therapist should say back would also help). You might tell her as well that there are a bunch of people online who also would like to know what they have to say to make it go away -- without pills. So could she please come online and tell us (or you could write out what she dictates to you)? I will say any magic words there are. I am sure everyone on here would. Collectively, we have used all the words in the English language, used every permutation of words imaginable -- and still, the blood pressure swings, pulse swings, and the mess which accompanies those, follow us. I think I would be very firm with her and tell her that it's in her genes, that denying that you have a major illness will not in fact make it go away -- and that if and when it happens to her, you won't be there for her. (And tell her that she should be very scared because it's a living nightmare.) With that short message, you might send her some articles from medical journals and refer her to spcific threads on this site.

Sophia-- Would the woman at Irvine treat dysautonomia do you think? The one neurologist I saw said he just doesn't diagnose or treat dyautonomia (I had called and asked if they ordered tilt table tests and thought that was all I had to ask). I was imagining therefore that something in their job description had to be more specific than Dr. Wang's. I think I read somewhere that Dr. Yan-Go had recommended breathing exercises -- I have recently read too many articles on how breathing changes with heartrate in dysautonomia -- and want someone who really emphasizes prescription medications. On the other hand, I should call there because getting in sooner would be worthwhile. Thanks for pulling up that info. Fighting -- Which neurologist at Stanford did you see? What exactly did Dr. Yan-Go tell you to change? Right now, I want proper tests and medication from a doctor. I've gotten sooo little of that over the years. On the other hand, I have spent an inordinate amount of my time making lifestyle changes for so many years (even without having a clue as to what was wrong) that I am hard pressed to imagine too many more. This disease controls what I eat, where I live, where I go, how I sit, exercise, what I wear, whether or not I sleep -- and even a lot of what I say. I think I will prefer getting my "lifestyle" advice from this site or thinking about what I read here. Why is she a "character"? I might like that depending on what it means.

I had to get inside out of heat some summers ago and broke a bone in my foot. I immediately thought I was going to black out. I was alone so I walked on the foot because I had to get inside and get ice. For a long time, I kept feeling like I was going to pass out. I contemplated calling for an ambulance (not for the foot of course) but just called my parents, kept them on the phone, and told them to call for one if I stopped talking. Once I made it through that time, I waited hours before going to the emergency room (where my pulse was high as a kite) for my foot.

Unfortunately most of the docs I've gone to just hand me beta-blockers for tachycardia and anti-anxiety pills because they think anxiety is causing all my "symptoms". Most don't know about POTS or Dysautonomia and they think I'm a hypochondriac for daring to have researched it on the net before-hand. That's so inappropriate. Name-calling is so childish and so obviously ignorant as to the physiology of this disease. They should not extrapolate from their own experience with anxiety to the way you present in their office (which is, doubtless, 100x more severe than anything they've seen unless they've deliberately ignored others with the same problem). http://www.pubmedcentral.nih.gov/articlere...i?artid=1501099 I hope you asked about the fine distinctions. Were they suggesting that you were also a hypochondriac or a hypochondriac without dysautonomia? It would appear that your doctors (and perhaps some others ) believe that there is a very select, prestigious club of patients with dysautonomia who are in fact worthy of the disease. And who wouldn't want to belong to that club? Thanks for telling me about your experience with UCSF. And Erik, a baiting doctor sounds good. I mean, it would seem to give you the possibility of following up on some of the bait ....

Even things like some antibiotics end up having effect on nerve regeneration... some are neuroprotective! That sounds interesting. Do you know how that works? Do you have a reference?