lthomas521

The norepinephrine test would have to be a blood test in order to be useful in POTS, because you need to know how the levels change within a minute or so, as your norepinephrine levels spike when you stand up. The values from a urine test would represent averages over however many hours it took for the urine in the bladder to accumulate.

I got mine mail order from the link on the "What Helps" section. http://www.brightlifedirect.com/

Sorry to hear that your little one is so sick and with such a perplexing illness. Has she been evaluated for a possible mitochondrial disorder? If not, the local Muscular Dystrophy group can probably put you in touch with a local doctor who is knowledgeable about mitochondrial disease. Another good reference is the United Mitochondrial Disease Foundation: http://www.umdf.org/

I think that a lot of us who have had POTS for a while already do those maneuvers automatically, which is why lots of us don't actually pass out unless we are strapped to a tilt table and can't do many of those compensatory maneuvers. One of my doctors showed me once that one of my "bad habits" (sitting hunched forward and with my legs crossed) actually boosts my systolic blood pressure by about 10 mm Hg. No wonder the temptation to sit that way was so irresistable. One useful maneuver they didn't mention in the article. If you get badly lightheaded from standing up too fast, tilt your head forward until your chin hits your chest. I learned that one from a retired nurse.

I've been wearing Jobst waist-high compression stockings every day now for a couple of years. My major complaint about them is they compress right down to the tips of my toes, which causes discomfort in my pressure-sensitive big toe nails. The nails are not ingrown, just incurvated. It's a genetic thing. But if I don't relieve the pressure on them, they get worse and worse. Anyway, I usually take a pair of scissors and cut open the toes of my pressure stockings so that they can't compress my poor toenails. Well, I went to put on my brand new pair of Allegro brand hose this morning, and I found that they have loose-fitting toe caps! Very comfy! Plus, they were much cheaper.

Are you taking an antidepressant? Some of them can give you serious night sweats. Ask the pharmacist if any of the drugs you are taking could cause the problem. If the sweating is just from dysautonomia and you can't find any way to prevent it, ask your doctor about Drysol, which is available only by prescription. If your feet sweat, you can get removable insoles for your shoes.

I think that they all read The Secret Garden, by Frances Hodgson Burnett, when they were children, and they thought it was a medical textbook, not a fairy tale! (http://www.online-literature.com/burnett/secretgarden/) In Burnett's novel, two children were sick because they were spoiled. All they had to do was stop being disagreeable and get out into the garden and exercise some, whereupon they were healed! And the same thing could happen to us all! All we need to do is think happy thoughts and run around in the sunshine! And pigs will fly!

Hmmm. "Doctors Data, Inc." doesn't seem to use the same definition for subclinical hypothyroidism that all of the endocrinology textbooks I've ever seen use. Subclinical hypothyroidism is defined as an increased serum TSH in the presence of a normal serum FT4 concentration (see http://www.thyroidmanager.org/Chapter9/ch_9-4.htm and http://www.aafp.org/afp/20051015/1517.html). In other words, the levels of free thyroxine (T4) are normal, but the levels of thyroid stimulating hormone (TSH) are elevated, which suggests that the thyroid gland is not responding properly to the TSH secreted by the pituitary. So, by definition, the thyroid panel results are somewhat abnormal. Although the term "subclinical" usually means a disease that is not causing noticeable signs and symptoms (e.g., a subclnical infection), the term "subclinical hypothyroidism" has a special definition doesn't address whether the patient has any signs or symptoms as a result of the endocrine abnormality. In industrialized societies, I think that the main cause of hypothyroidism is autoimmune disease, not iodide deficiency. So I'm wondering what value the iodide loading test would have. There has been considerable debate lately about what the "reference ranges" (i.e., the presumably normal values) for the thyroid panel should be. If a disease is common enough, then a fair number of people with the disease will be included in the population that represents the "reference range" of normal values. For example, if the main cause of death in a population is coronary artery blockage, then you will probably find a lot of people with high cholesterol values in that population. You shouldn't conclude that the values that are typical in that population are "normal" or healthy, just because they are typical. Similarly, there are a lot of middle-aged and older women with mild hypothyroidism. Just because their high TSH values aren't particularly uncommon doesn't mean that such values are nothing to be concerned about. So, if your TSH values are on the high end of the "normal" range or your T4 levels are on the low end of the "normal" range, you might still have a thyroid disorder. The biggest problem, as I see it, is that thyroid problems can cause such vague yet pervasive symptoms that it is tempting to suspect a thyroid problem whenever you have a fatiguing illness--especially if other people in your family have hypothyroidism. That, combined with the uncertainty about what constitutes "normal" thyroid panel values, creates a lot of confusion. Such confusion can provide a "business opportunity" for "alternative" practitioners who may be "subscientific," "subcompetent," or "subscrupulous." So, buyer beware! People with tachycardia should be particularly careful about overloading with iodide, because their underlying problem could be hyperthyroidism (overactive thyroid). If you were to take iodide supplements, you could make that problem much worse, I think. Excessive amounts of dietary iodide can also cause acne, or so I've heard.

Ramakentesh, Thank you so much for keeping us up to date with this research. Your updates have really boosted my spirits and given me hope. The information about the vein biopsy results really cheered me up, because it sounds so definitive. The information about the folate was particularly intriguing, because I have been doing much better since I started extra folate supplementation. The most important thing that I have done is to take high doses of thiamine. Maybe the researchers from Baker will figure out why that has been beneficial!

My guess is that "Barre-Lieou syndrome" is a wastebasket term that chiropractors and accupuncturists and so on use when they want to attribute whatever is wrong with you to what they imagine to be a structural abnormality of the vertebrae in your neck. It's not a term that real neurologists seem to use very much. http://jnnp.bmjjournals.com/cgi/content/full/75/2/319 Prolotherapy generally involves the injection of irritants to promote the development of scar tissue in specific locations. Personally, I would avoid it unless I had some clearly identified mechanical problem that a little bit of strategically placed scar tissue could fix. http://www.ncbi.nlm.nih.gov/entrez/query.f...l=pubmed_docsum

Definitely make sure that you are lying flat for the procedure. I was sitting up during my first one. Big mistake. I was lying flat during my second one and passed out anyway. Can they give you some saline after the procedure?

What does smoking do to a POTS patient? Give her cancer!!!! Not to mention ashtray breath. If you think it's bad having POTS, just wait until you have POTS and emphysema! (My sister-in-law died of smoking-induced emphysema at the age of 54, so maybe I'm biased.) Even if nicotine were some kind of miraculous drug for POTS, you wouldn't want to inhale all that carcinogenic tar, along with the carbon monoxide, just to get the nicotine. They'd give it to you in a clean form, like maybe a patch. If you want to tighten up your blood vessels, take midodrine--which is NOT addictive. That being said, I'll bet that having POTS makes it more difficult to give up smoking. If you smoke, ask your doctor and pharmacist for help in quitting. Even if you just switch to the patch, you'll get most of the carcinogenic crud out of your life.

A nephrologist also tested my aldosterone metabolites in a 24-hour urine specimen. It shows how much aldosterone you produce in a 24-hour period. Mine was 8 times the upper limit of normal, which the doctor said meant that my adrenal glands were working overtime to try to compensate for my hypovolemia. We never did figure out what was causing the hypovolemia.

Dumb question: can the soles of your feet sweat, or is the lack of sweating just on the legs? If someone's feet sweat like crazy, especially on bad days, can she safely rule out denervation?

I asked about blood volume because the theory behind salt and water loading is that many people with orthostatic intolerance (including yours truly) have been shown to have abnormally low blood volume. Normally, you'd expect someone with low blood volume to have low blood pressure, especially when they stand up. However, Dr. Bell described a patient who had abnormally low blood volume but a serious increase in blood pressure when he stood up. After they gave this patient some intravenous saline, his vital signs normalized. Dr. Bell explained that they would never have dreamed of giving a hypertensive person intravenous saline unless they had just measured his blood volume. Unfortunately, the intravenous saline is a very short-run solution to a chronic problem. So you can't completely rule out low blood volume just because you get hypertensive when you stand up. I don't know why Dr. Grubb has said lately that people with hyperadrenergic POTS shouldn't do salt loading. My vital signs are much more stable and much more normal and I can tolerate much more activity when I do the salt loading. I also don't know why some doctors are recommending norepinephrine reuptake inhibitors for people with POTS. We know that some people with POTS don't have a functional norepinephrine transporter to begin with, and we know that some norepinephrine reuptake inhibitors can produce orthostatic intolerance (mainly, orthostatic hypotension) in people who didn't already have it. Very confusing.

Primary means that they can't find any other disease in you that could explain the POTS. If they find that you also have some other disease that could account for the POTS, then your case of POTS is considered secondary, not primary. Hyperadrenergic means that you get elevated norepinephrine levels when you stand up. If that theory about the faulty norepinephrine transporter in POTS patients is correct, it would account for high norepinephrine and normal epinephrine levels. It's interesting that you get hypertension when you stand up. Have you had your blood volume tested?

My plasma volume actually went down further after I started taking Epogen.

I stopped having serious nightmares after I started taking a self-defense course, many years ago. My typical nightmare involved someone attacking me. After a few months of training, the nature of these dreams changed altogether. The attacker would come at me, and I'd naturally do whatever I'd been taught in class to do. For example, if someone tries to grab you around the neck from behind, you can do the second basic throw. Naturally, things in dreams do not follow the rules of mechanics, so things that always work in real life do not always work in dreams. If the second basic throw didn't work, I'd move my hips to the side and do a hammer fist to the ... well, you get the idea. I'd go through various options until it dawned on my sleeping brain that nothing was working because I was dreaming. But in the meantime, the whole experience had changed from horrific fear to a routine technical problem. Unfortunately, martial arts training involves far more orthostatic stress than I can currently tolerate. It's probably not something that a POTS patient can undertake. One other thing that helped was that I was deliberately trying to train myself to recognize when I was dreaming. If you realize that you are dreaming while you are dreaming, the state is called "lucid dreaming." Are there any strange, impossible things that occur often when you are dreaming? Try to think about these things as soon as you wake up from a dream. Think of them as signs that you are dreaming. Another technique is to routinely ask yourself during waking hours, "Am I dreaming?" This habit may help you think of the question while you are sleeping. Once you know you are dreaming, you can take charge of your dream and do whatever you want in it. It's very liberating. If you are having one of those "sleep paralysis" episodes, don't try to fight it. Try dreaming instead. Imagine yourself levitating off the bed and flying through the open window.

Hi everyone: I looked up "adrenergic" in Stedman's Medical Dictionary, and it said, "relating to nerve cells or fibers of the autonomic nervous system that employ norepinephrine as their neurotransmitter." Epinephrine, which is chemically related to norepinephrine, is also a potent stimulant of adrenergic alpha- and beta-receptors. So I guess that too much norepinephrine or epinephrine would qualify as a hyperadrenergic state. (Norepinephrine is also called noradrenaline, and epinephrine is also called adrenaline.) It looks to me as if Futurehope has excessive amounts of norepinephrine after 5 minutes of standing. I have no idea why they said that it was a normal increment. Might be a mistake in the report. It looks to me as if she might have the diminished norepinephrine reuptake that people have been talking about. In people with normal reuptake, the norepinephrine gets transported back into the nerve cells. In people with abnormal reuptake, the norepinephrine spills out into the bloodstream.

That's not a stupid question. It's as good a question as why we have low blood volume to begin with. I can't get clear answers to that question, either. The usual response is either "some sort of autonomic nervous system problem" or "gee, that would involve some sort of really basic homeostatic mechanism." In other words, they have no idea.

That's not normal. See a doctor about it, right away. It could be that the circulation is being cut off to that part of the body. Or maybe there's a problem in the spinal cord.

I was born a week late. I was due on my grandmother's birthday! The suggestion about personality was interesting. I'm educated, and as a copyeditor/proofreader I've had to be a perfectionist, but I don't think that's why I have POTS. I think it's why I KNOW I have POTS. Perhaps you have to have those personality traits to be able to swim upstream against the tide of "it's all in your head" and get a correct diagnosis.

If you are too sick to think straight, it might be better to take a semester or two off than to ruin your grade point average by toughing it out. If, on the other hand, the problem is simply writer's block, there are ways around that. One of the best is mind mapping (http://en.wikipedia.org/wiki/Mind_mapping).

Sounds like POTS to me. In addition to your tilt table test, have your catecholamine levels tested while you are lying down and standing. Bring stuff from the www.POTSplace.com with you, especially the myths thing. If he tries to give you myths, point them out in the material.

The tremor could be a sign of hypovolemia, which is common in people with orthostatic intolerance. It could also be a manifestation of hypoglycemia.