Tachy Phlegming

Wasn't that a porphyria show? Haven't a lot of people on here been checked for that?

You really need this kind of thing for patterns, whether you're looking at blood pressure or heart rate. There are certain things you'll find during the day to raise or lower one or the other of those and if there is anything volitional which raises or lowers it to a more desirable number (like lying down, using a/c, or whatever it is), then when there are things you can't control (time of day, time of month, whatever else), you can try to do one of the things you can control which gets it to a better number. Even if you have a machine which isn't wonderfully accurate, you get a general sense of how it is inaccurate and how you feel for numbers on the machine. The numbers shouldn't be scary. Generally, they are informative. Occasionally, you'll say yikes but the knowledge is never scarier than the sensations of the disease.

These people are cowards. You tell them you don't mind the pain and they are worried about things like a little screaming or moaning. I've told more than one doctor to do a painful procedure with little or no medication and you should see how frightened they get! I always wonder if they are they worried about their eardrums or whether this is where the conscience of a doctor surfaces (never seems to appear when they want to put you down and tell you about phantom anxiety, can't see how anyone still said that when you told them you'd endure pain nobody else does). Hope they told you you are a great hero with nerves of steel! And may they think they learned something from what they must perceive as a great show of emotional strength. If they can't figure out that excruciating suffering is worse than pain for some of us, they will have to admire our great courage.

From the first part of the article (not the latter part), it sounds to me like I need a blue pill. In fact, and not in accordance with what the article suggests, the best results I've had are on red and white pills and sometimes, an orange pill; other times a green or black pill. Does anyone care about taste? As far as taste, I like bitter so when it's a bitter pill to swallow, I do just fine! Not sure I'd like Verapamil. I have some idea that they do in fact work on people with problems with the cold as someone mentioned above. Guess they should be red ...

I don't like trying herbs (too little known) but I accidentally had some (along with some other herb I never planned to try) in a commercial soup preparation and really liked the taste. The experience wasn't bad but I did feel a little different on them and would not have done it again but for the taste ...when I was sicker, I probably was more conscientious about avoiding them, now maybe a little less so.

No personal experience but you might look up Rach73 (I think that's her handle). I think she had that problem on Midodrine. If it isn't that, you can look up Bethanechol. Again, no experience, but if I had that, I'd think about that med...

There was nothing at all different about food or meds or med procedures right before the flare -- or an obvious change in weather or heating or cooling of where you were? Had you been off most meds for a while lately? Hope you are able to feel better very soon ...

That sounds really neat. Do you have a link? What kind of scale is it? I'm assuming it doesn't do that with normal people ...

Without looking through your posts in particular, some of the people on here should have acetylcholine receptor antibody tests -- both the "usual" ones and ganglionic ones. If you're doing catecholamines, also get standing and supine.

You might want to try posting on a Behcet's disease forum. They're the mouth sore people. They should have been examined for conditions with tongues similar to like that so even if it's not that, they may be able to tell you a whole range of conditions to have Doctor number 38 (or whatever number you're actually up to) rule out...

Happily your writing is pretty decent now. If it declines with hearing things which don't make sense and your subsequent anger, it still may actually deteriorate quite a bit. Sorry if you were dreaming of perfect writing for having heard one logical tidbit in a sea of nonsense.

Sorry Endure, that was supposed to be deadpan or dry wit. I thought your meat grinder example was delightful (i.e., extremely funny) and thought I'd elaborate on it for sport. These people couldn't think their way out of the paper bag they would have us breathe into... (and of course, any who might tell us we don't need to breathe into one in the first place might be able to).

I don't know the various curricula med schools offer or courses they require all too well but I think some courses must teach special medical theories of probability which all students learn and which are extremely technical. Given the experiences of people even just on this forum, I think these theories must be tested on board exams and rarely discussed in public. My minimal understanding is that medical students learn special (very special) cases of Bayes' theorem: http://en.wikipedia.org/wiki/Bayes'_theorem Here is a hint of how it is applied in medicine: http://www.cs.ubc.ca/~murphyk/Bayes/bayesrule.html When you factor in other things like each individual doctor's personality, whether you (the patient) are short, tall, or in-between, and whether you are 10, 20, 30 etc., you can understand that the precise algorithm for determining the etiology of something like an ear problem is quite sophisticated and similarly, the determination of the cause of the aggravation of the problem seemingly (but not actually) by the addition of more fluid to the ear, would have little or nothing to do with common sense. Despite the unbelievable complexity of this type of analysis even for seemingly obvious ailments, I think you may well have a good understanding of how it works. So if in fact you were to get near a meat grinder and your hand were to come off, I believe that indeed a doctor would analyze it to have been likely to fall off from an unknown cause and therefore, the fact that you were near the grinder should be considered coincidental. On a more practical note, you might want to take the antibiotic to deal with whatever is now brewing in there (which, according to the above obscurantist theory, was likely to have been exacerbated from unknown causes or known causes of other problems no matter what the doctor did). You also might look up some of the folk remedies (positional tricks, hopping on one leg with your head tilted) to get the fluid to come out.

I had a headache for a couple of days from a bath mat. The second I figured out that that was a possibility, the bath mat went outside. When the headache went away 10 minutes later, the bath mat took a longer trip. A med would have almost the same fate. With this kind of illness, after a certain point, a med really had to give me some real relief from something within a finite period of time and have few or minimal side effects. The "side effect" I seemed to start to experience if and when a medication didn't give me any or too minimal relief was an overwhelming amnesia about taking it. Do you get the headaches a particular amount of time after taking it? It would be good to figure out whether it's when you take it or when it wears off as well as whether there's a time correlation to when you feel that "ray of light." That could help you figure out whether you need it or need to discontinue it. That trip sounds miserable ...

Nice when you can smile when you read a post on here. It may actually help GI issues (really helped me) depending on what your exact problem is. Just make sure to check whether it interacts with whatever you are trying. Tell us how it goes. I love (maybe hate is a better verb) stories where a patient can get a meaningless psych prescription in a hot second without even asking for it -- but (after having an idea of what is actually wrong) has to request over months the med for the condition from which he/she in fact suffers. If the med works for you, we'll have another story to remember ...

Uh, everything?... I was really physically miserable before I started it. I am off of so many OTC meds I had absolutely needed for years. I don't feel like a space cadet nearly as often. And I don't have one single side effect. I breathe... If you are very very sick right now, you might want to be pretty careful about dosing at first -- like maybe trying 1/4 pill at first then 1/4 more within a half hour or hour. I was slow about ramping up to 2/day. However, if I don't take this much now, it appears that I begin to be symptomatic with a bunch of nonsense within days. If there is any way you can get to try it and you have some particular reason to think it may help you, it may well be worth every amount of effort trying to convince your doctor. Some appreciable number of people on here have found that it helps more than any other medication they have been prescribed. And p.s., it also works at the autonomic ganglia if that is of any interest.

Does anyone have this idea of what must be their experience?: Oh yeah, people die. I've had patients die. Some of them were young. You cry the first few times. Usually, you can't catch it. You know, a result comes back abnormal but they look totally healthy. And yes, they decline when the lab result is bad and you don't treat it but that's probably not because of the result but rather because they get older. Or a psych thing makes the result abnormal. You really never know. The tests are just part of the job. Something to do. Most of the time, you shouldn't treat on the basis of an abnormal result. Just give the usual meds. If a patient complains about the usual meds, it's psych so you can just refer the patient. On another related note, that looks like a standard formulation, and like some kind of equivocal result that in fact, they don't like to treat but just note. It appears in similar form, in this: http://braindiseases.wordpress.com/2008/05/15/mri-white-matter-lesions-does-it-represent-ms/ But you know, the people who get these MRIs must have been complaining a lot to even have the test so you've got to wonder why they don't retest or treat for this finding.

I think some of the people on here had said that international flights are pressurized better. (Someone on here can look up and write in the exact specifications just because I'm too tired right now). I really can't fly without risking my life. I need oxygen most of the time in the air and I can only get it in an emergency on a flight. If I collapsed without being able to get oxygen because the flight didn't have it available, the next trip I'd be taking after the flight would be six feet under ... I think many doctors addressing this issue would point out that then I'd never have to fly again and the pressure underground would be better -- but I think it takes very specialized medical training to understand that.

Whether it helps anyone else? LOL. When people are in big big trouble and absolutely can't breathe and there's nothing else, what do they do? You might try cool compresses on your neck, and abdomen, and back and even legs while you're at it. And ice. And just leave them there for a really really long time because you may not feel how much they help at first if you're really bad off. But you need real pharmacological help as well if you're not breathing. Life is really much better when you can breathe at all close to normally ...

I know your story too well. I remember going to an outdoor concert and it wasn't some rock band -- but when the drums started, my heart rhythm changed (happily for me, I didn't get any surges from that but it was still awful). I was so horribly uncomfortable, I had to ask the person I was with to sit way farther back. This type of thing predictably happens for me with very low sounds which produce vibration (some high sounds which are loud enough can make me uncomfortable and did more when I was extremely sick but I can often take them now). I can otherwise generally tolerate a fair amount of loud noise.

Is it that God appears to you in different guises but always in a white coat and introducing himself as a doctor? If he is telling you that can endure the pain or the debilitating and dangerous change in vital signs, that's got to be hard. Most people would imagine one guise of this type of God out there you could have faith in but finding him is often a very elusive goal. It does seem that many of us try to retain an Platonic ideal image of a white-coated "God" who if need be, takes away pain -- but most importantly-- is a vital(s) stabilizer. (Sorry if I didn't state it perfectly but these are quite difficult philosophical issues to address). --- I think I remember your saying you got someone to do a TTT on you when you took a pain med. and they finally got it. I hope that at some point, you can pick up a pattern of when you get reactions because it would be easier to then ask to be monitored and have certain treatments. Until at least that point, it sounds miserable.

I wish ... That is really nice. It's heartening to hear that story even. But I've had Joe Hill's experiences. Most of us don't have that "Je ne sais quoi." (And if you're selling that ineffable quality for a reasonable price, I'm sure it would be marketable!).

I don't like that approach at all. And I agree that a colonoscopy or a PSA test won't do you a bit of good (if you can even tolerate a colonoscopy) when they're not diagnosing the disease from which you've actually obviously been suffering for years (obvious doesn't help when it's unbeknownst to anyone but us). Ask the doctor if your pulse or blood pressure (or whatever he/she can "measure") are "normal." Tell the doctor you don't think it's normal and that you feel awful when you get those measurements. Tell the doctor you need a referral to someone who can treat you appropriately for these abnormalities. Do have a list of doctors you think might be able to help available (call first and ask about whether they treat people with what you have) ...and have another list for when you go in just in case the doctor you thought would help doesn't ...

I could have neither epi nor most local anesthetics. The one made my heart race, the other gave me presyncope. So I asked for Mepivacaine also known as Carbocaine (thank you DINET, I had no idea what to ask for before reading about it on here). What is nice about this anesthetic is that it only makes your doctor or dentist feel bad when he/she gives it to you. It doesn't work so well so they hear you saying "ouch" over and over and they feel like they're inflicting pain on you and they're told in school that it's bad to do that or something. (Oh yeah, and it's bad for business if anyone hears you). I must have gotten about 20 shots of it for a nothing procedure. And I had the procedure done basically in short jabs, each of which was a little painful. But I walked out happy. A little transient pain (the jabs, nothing hurt afterwards anyway) doesn't compare to excruciating suffering ....

It won't cause withdrawal if you take it once. But the real question is, did it help? If it did, you might want to consider continuing it until your problem seems to go away (if indeed it does)(and without being nervous about it). If the problem doesn't go away on it, then you might consider using other methods to control the orthostatic problem so that your breathing is improved (your breathing can be really bad when your pressure and pulse are off forgetting whatever other problem they might think you have now.) If the prednisone doesn't help, ask them to think in another direcction. What ANS effects concern you?