Tachy Phlegming

You need a TST for certain reasons. The TST combined with the QSART can give you evidence of where sudomotor problems may originate.

Google Harrison's neurology in clinical Medicine, p. 335

(I can't figure out how to put that link in so maybe someone else can).

How quickly did you want people to call the ambulance when they saw the green light for you lying down?

I always have symptoms. They can be excruciating or, on good days, just bad. Sometimes I can't lie down because of symptoms. When I'm sick enough, lying down can be worse than standing, when I'm medium sick, it does nothing, and when I am comparatively better, it helps. Which means you can't necessarily figure anything out from that.

I remember describing how I felt to someone with congestive heart failure when I had no idea what I had and she told me she had the same problems with congestive heart failure.

I've also seen someone with problems more typical of dysautonomias and hearing both that the person had congestive heart failure and also not -- from different doctors. So you might want to think of them as not completely distinct entities. You might end up (not by choice necessarily but if one doctor says you have one or the other) seeing which treatments work and which don't because your treatment in any case is going to depend on what makes you better and your labwork as normal as possible. But if they say you have one and the treatment seems to make you worse, you might need to find another doctor.

I'm betting you're right but if it's not too terrible, I usually do more than one trial if for no other reason than to make it more scientific for when I have to discuss it; it also sometimes helps me personally to be absolutely sure that the problem is not attributable to something else. Not that this is the healthiest thing to do but every once in a while, extra testing also yields extra information which is useful. (With foods unfortunately, I end up doing more trials and too many inadvertent ones).

It could also be helpful to look at a myasthenia gravis site which will probably describe exactly those problems when you take too much Mestinon.

I think my reactions to mosquito bites are completely abnormal.

The first time I really got bitten after being sick, I didn't treat them with anything and either a doctor or dentist or both commented on them.

If I don't treat mine with powerful steroid cream, I get an absolutely enormous lump (about 1.5" diameter and raised about .25") and it itches terribly. I think I've also needed to use Benadryl ...

http://www.ncbi.nlm.nih.gov/pubmed/7646078

I wouldn't put too much stock in an analogy but if you're up for real science ...

There have been a lot of posts on here regarding the ideal type of exercise. If you prefer your exercise sitting or lying down, this may be the workout you need. But it requires special and uncommon abilities (which is why perhaps some people might want it considered for a new Olympics sport).

Personal trainers call this amazing stretch exercise linguonasal spelunking or linguonasal excavation.

Doctors know it as Gorlin or Gorlin's sign and it involves touching the tip (or exploration of the inside) of the nose with the tongue.

It further appears that many more people with EDS can do it than the population at large.

It can require a little practice over a few days but if you're on this forum it may be well worth it to find out if you have the special talent to do this unique stretch exercise.

Has anyone done this?

If you're a true "potholer," you can.

http://www.thefreedictionary.com/potholer

Aw, come on ... we'll live without the better judgment (at least when that involves withholding jokes) ... and live better with the laugh.

In anticipation, .

From:

http://www.medicalnewstoday.com/

Repeated Inflations Of A Blood Pressure Cuff Limits Tissue Damage In Patients With AMI

Main Category: Cardiovascular / Cardiology

Also Included In: Clinical Trials / Drug Trials; Stroke

Article Date: 26 Feb 2010 - 6:00 PST

Repeated lack of oxygen for short periods of time in a distant organ by stopping blood flow, can protect another organ (e.g. the heart), during a subsequent tissue damaging period due to oxygen deficiency. The principle can be applied before predictable oxygen deficiency during heart surgery. However, in most patients heart attacks are unpredictable. In this randomized single-blinded trial, the investigators tried to determine whether remote ischemic conditioning during evolving myocardial infarction could have a protective effect and decrease heart tissue damage in patients later undergoing acute balloon dilatation .

A total of 333 Danish patients were assigned to receive remote conditioning or no conditioning during ambulance transportation to the hospital for acute balloon dilatation. In the group receiving remote conditioning a blood pressure cuff was placed on the upper arm and inflated to 200 mmHg for 5 minutes to stop blood supply to the arm, and then released for another 5 minutes to restore blood flow. The procedure was repeated 4 times during transportation.

On average the amount of heart tissue saved was 30% higher in patients receiving remote conditioning compared to those receiving standard care. This increased to 50% among those with the highest amount of heart tissue threatened by coronary occlusion. Limitation of tissue damage resulted in improved heart function during hospitalization.

The underlying mechanisms are thought to be activation of protective systems in the heart. This induces resistance to tissue damage during lack of oxygen in particular when opening the occluded artery by balloon dilatation. The investigators characterize the treatment as inexpensive and promising, and predict that it will have widespread potential for the treatment of not only heart attack but also other diseases such as stroke. However, larger studies are needed to establish the precise benefits in patients. It also needs to be clarified whether the new treatment can reduce mortality and development of heart failure following a heart attack.

The study was conducted by a transatlantic research team at Aarhus University Hospital Skejby, Denmark, John Radcliffe Hospital, Oxford, UK and the Hospital for Sick Children, Toronto, Canada. The study was supported by a grant from Fondation Leducq.

(Just make sure you continue to have that cuff on your arm if you're en route to the hospital for heart attack symptoms!)

Just wondering if anyone else out there is having trouble when they get an abrasion or cut not healing? I notice even if I put Neosporin on the smallest little cut, it almost makes it worse - I am wondering if it is me, of something related to the POTS?

I had a lot of problems getting something to heal when I used Neosporin and it appeared to make it worse. The dermatologist repeatedly said it couldn't be the Neosporin and I ended up angry with myself for keeping wanting to stop using it in light of what he and another dermatologist said.

http://www.imdb.com/title/tt1242124/plotsummary

Funny too, I could swear she says on some of these shows that the patient could've lived if only he/she had seen a doctor.

I'm thinking you wouldn't have gotten less from a meeting with a practitioner of Reiki:

http://www.holisticonline.com/Reiki/hol_re...ntroduction.htm

I've had it. A few times when I first got sick and then here and there over the years -- but I'd have it two or three times in a day and then not have it for a long time. Very dry foods sometimes seemed to have some relationship to it but I really didn't understand what was going on. It was scary.

When I've been thin (a lot of my life), I was told I needed to gain weight. When I've been unable to eat, I was told to eat. After I explained that I was unable to eat, a rude doctor tested me for anorexia nervosa (honestly, he had a lot of more reasonable things to test for which I haven't been tested for yet; apparently, the only and exclusionary criterion for medical testing is lack of necessity).

Any other time, people tell me to lose weight.

When I was really sick and couldn't eat properly for months, I resolved to eat as much as I could when I could because I had been so worried about starving to death and not having enough body fat to burn. After the worst of it, it hurt terribly to eat to capacity and beyond but I did even though I liked certain things about being thinner. I couldn't eat for a time the next year too but I did put on 30 pounds over two years. Here and there, I really can't eat because of one or another disease problem and I'm glad I have the extra weight at those times. I feel better a little heavier.

But I hate the comments and hate the fact that people say I'd be all cured if I were thinner; I keep repeating that I was sickest at my thinnest, could not be cured at that time or subsequently by weight loss, and that I gained weight on purpose. I also mention that at the rate I'm going, I'm going to be so sensitive to every food there is that I should try to enjoy any food I can while I can. I'm still waiting on wheat sensitivity but I've developed almost every other possible one.

The easiest thing for me to have done would have been not to eat when it hurt but I couldn't imagine becoming emaciated and more ill from being thin (and being suspected of having anorexia nervosa after I denied it) if it were at all preventable.

The irony of course is that any nutritionist would feel completely qualified to tell us what we should eat and what weight is ideal for any of us at any particular time without knowing the first thing about this disease -- but for regulation of any other body system, there are specialists who will refuse to treat us.

I don't know what the climate is like in Mauritania, but there, it seems you could have two groups of admiring friends who appreciate one weight or the other you could cycle through. That seems socially ideal for people who can be too thin or overweight at different times:

http://news.bbc.co.uk/2/hi/3429903.stm

I used a ton of it when I was really sick -- but my problem was mostly extremely bad pain from food and/or being very tachy with breathing problems in the heat. It helped a little (very little) with those problems and didn't cause me any ill effects. For all I know however, I would have had to use the bathroom (even a lot) more without it during that time -- so maybe it will help.

I had something like that late today or tonight (I don't remember exactly when it was though) -- pretty intense, different from what I've ever had before ... but not quite as bad as you (well maybe it was for those 2-3 seconds because I think I wondered similar things for that amount of time) and mine had no lasting effects. I wouldn't have bothered posting about it but now that you have, I will wonder about whether it had to do with some hiccough in the weather because I feel weather effects from miles away and if you are where you usually are, you are also not so far away that the same weather phenomenon might not have traveled.

What did you do and where are you exactly?

I've heard of treatment like that:

http://en.wikipedia.org/wiki/Abu_Ghraib_to..._prisoner_abuse

I thought that the tilt table was just to confirm symptoms and that some doctors don't use it at all.

(And that the test itself can get you sick which means that much more damage to your body and recovery time).

What did he say the purpose was?

Once, after being extremely sick for a very long time, I asked to get off the plane after they closed it -- and got oxygen. My legs felt extremely weak after that flight, my voice shook uncontrollably for a day or two from weakness, and I could barely eat anything at all for days afterwards (in the middle of a period of years in which I had a lot of difficulty eating because of other symptoms).

Another time, I fell asleep, woke up and (still half-asleep) felt like I was going to lose consciousness so I ran to the back of the plane where I collapsed hot as blazes (I think that's the only hot smiley ); I iced myself down.

Another time, between flights, I got nauseated, hot as blazes (wet myself down) and then so exhausted, I fell asleep.

Another time (on the flight), I got up to use the bathroom and planned to go to sleep when I got back to my chair when, all of the sudden with no warning or feeling beforehand, thwack....!! I got oxygen.

I see two other electrolytes in that solution.

http://en.wikipedia.org/wiki/Electrolyte

http://en.wikipedia.org/wiki/Salt_substitute

And by the by, if you have IC, bicarbonate of soda (in a higher concentration), can give you some temporary relief although I wouldn't want to rely on that as a long term solution.

I made myself some of this the other day. You may want to experiment with the ingredients a little until you get the taste right.

(And by the by, I for one, can get bad stomach pain and urinary frequency and urgency from V-8 and fruit drinks [even diluted] so I can't have those.)

I've had the scalp pain. The last time I cut my hair, I didn't want to for aesthetic reasons but did it because my scalp hurt from my hair for over a week or two.

I had some thoughts about my nose when I couldn't breathe through my mouth very well and a terrible time with breathing through my nose ....

http://en.wikipedia.org/wiki/Cutting_off_t..._spite_the_face

Again, not for aesthetic reasons (ignoring the problems with the expression as it applies historically, we also hardly need to be noseless to protect chastity with this disease ) ).

It would have been nice had that been as easy to remedy as scalp pain ...

I had a rash that looked like that. There was nothing about mine that looked different.

Mine was from the sun. It started developing a day after exposure to an hour of full sun (and very hot weather) after months of indoor living. It got a lot worse within days. Mine was all over my body because I was wearing shorts. It started to turn purple behind my knees and it spread. It itched.

Do you know whether yours is from the sun?

Is it?

If you think it isn't, has your sun exposure changed recently?

Does it itch? (I'm not sure that what I got on my face that day really itched now that I think about it).

If it's not from the sun, that's interesting -- it looks so much like what I had.

I thought it could possibly be Lupus and the doctors thought the same but it wasn't biopsied and they called it "polymorphous light eruption." I used oral Benadryl and also a strong cortisone cream to treat it. They won't prescribe a strong cortisone cream for your face (but had I not used it extremely sparingly on my face -- I'm pretty sure I had to resort to that at least once eventually -- I think it would have made my face more sensitive and more irritated than with that minimal treatment). My skin was super super sun sensitive for many many years after that exposure.

What medications have you tried for it (if you have)? You should try to get into even a garden variety dermatologist. I can't imagine that they wouldn't try to treat that and/or give it a name. I don't know why another doctor wouldn't have tried to treat it or referred you for treatment.

I also had a big problem with a small amount of local anesthetic put into my nose. My mouth and then my fingers got numb. It felt like I was going to pass out.

I had told the doctor to be very careful (but also that my pulse had gone sky high on epinephrine [so I didn't want that at first]) -- and in fact, had I been given a higher dose of the anesthetic, I think the doctor would have needed to order emergency care.

He didn't seem to want to give me epinephrine at that point even though I would have tried a very small amount (and asked for it) in order not to feel faint.

I did not come up positive on a test for allergy to local anesthetics (which is the reason I thought I might be okay without the epinephrine) -- so that test may not give you the information you need. Nonetheless, it is my understanding that these days, some hospitals and doctors just call any adverse reaction to a medication an "allergy" sort of as a convention even though it is not technically accurate and actually rather misleading. I protest a little because of the scientific inaccuracy (which also leads us to think we need allergy tests for medications to which we have adverse reactions) but ultimately, I only really care about getting a treatment which doesn't harm me.

They are supposed to be practicing "evidence-based medicine." But with some things, it appears that they don't:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1681419/

And then here's something a little more fun which sounds like what you experienced: (Although this video is really about the dangers of using homoeopathy for cancer etc., I daresay it's more likely you get this with any other condition [just posting this for the video, not the rest of the page]):

http://religionvirus.blogspot.com/2009/09/...t-of-humor.html

Good luck with finding someone who is better. When they make so many mistakes, don't know, and use crystals, (and charge a fortune for it to you or an insurance company anway), it's an ongoing nightmare.

Good for you Frank!

There was a doctor who administered a drug to me and then told me to breathe slowly when I told him I was on the verge of fainting because of the drug. Happily, he didn't ask me "what happened?" when, for a few minutes, I couldn't even think about anything other than what would happen if I lost consciousness (and therefore didn't do what he said).

Here's a dysautonomia war song about the disappearance of your flowers and what happens to young women (well maybe that one isn't quite accurate), men, and soldiers when they can't breathe. (The refrain ["when will they ever learn?"] obviously, is for the doctors ) :

http://www.arlo.net/resources/lyrics/flowers-gone.shtml

I was very specific about asking for oxygen before (and after) the test (and I only dressed comfortably). They didn't want to give me oxygen (I think one person on here did get oxygen for that test -- and there are reasons oxygen helps diminish the adverse effects of low blood pressure). So if I were indulging my sense of humor (and trying to obtain good post-test care), I would wear blue lipstick and blue nail polish along with tight spandex pants if I had to do it again. Sequins would be good to reflect the blue onto skin ...

You also might concentrate on looking beautiful and dressing to the nines, so that you don't think about the test. (And of course, you at least want to look beautiful when you feel so awful with wild blood pressure or pulse swings)

With bleach or other cleansers, perfume, hairspray, I make sure windows get opened. Same thing with any cooking. Heat has to go off when I get too hot; people are told to wear coats or use heating pads. People love to be around me.

If this is normal, I don't see why the people on this forum complain about how "normal" people don't get it. To the extent that I have been told by normal people that they know a lot of people who "can't stand" all of these things, I let them understand how wonderful they'll feel when all of these normally offensive smells and heat are allowed out through the window.