lthomas521

My legs and feet don't turn red or purple when I stand up. Perhaps that means that I have "low-flow POTS"?

No need to worry yet. There are some nondangerous causes of hypocalcemia. Chances are that it is something minor and treatable, such as vitamin D deficiency or magnesium depletion. And maybe the hypocalcemia is making your POTS worse. In which case, finding and treating hypocalcemia is good news. I hope that eases your mind a bit. I don't think that calcium supplements, by themselves, will be enough to solve the hypocalcemia problem. Your skeleton has huge stores of calcium, and the amount of calcium in the blood is usually pretty tightly regulated.

I was given the same advice, by doctors at Mayo Clinic who didn't think I was really sick. They told me that my problem was simply deconditioning, because I was too weak-minded to tolerate the ordinary discomfort associated with exercise. (Okay, I used to be a martial arts student and had sailed 1000 nautical miles against the trade winds in a small boat, but I couldn't handle ordinary discomfort? Did they listen to nothing about my history?) They said I should stop thinking about being ill, and stop talking about illness, and stop having my blood pressure measured, and magically I would stop suffering. My problem was inaccurate thoughts, not dysautonomia. Just think happy thoughts, Tinker Bell, and you can fly? Later, I went to Mt. Sinai, where they said I had a "florid" case of POTS but that I was managing it so well (because of all the stuff I learned at POTSplace) that they couldn't do anything further to improve my care. If you are really sick, then refusing to think or talk about how sick you are doesn't do any good, in my humble opinion.

It's the New England Journal of Medicine's Web site. Just go to their main page (http://content.nejm.org) and create a login. Then you can read anything that's a few months old or older for free. It's an interesting article about a genetic form of POTS. I know someone who's on an MAO inhibitor, and she has to avoid tyramine. But she doesn't have POTS.

People with POTS tend to have a blunted response to tyramine. In normal people, tyramine causes an increase in blood pressure. This happens because the tyramine is picked up by the norepinephrine transporter and brought into the nerve cell, where it triggers a release of norepinephrine from the nerve cell. In people with POTS, the norepinephrine transporter is probably either missing or not functioning, so the blood pressure doesn't increase in response to tyramine. http://content.nejm.org/cgi/reprint/342/8/541.pdf So I don't think the tyramine content of the diet matters to someone with POTS. It might be important for people with other autonomic nervous system problems that look like POTS. I don't know. It makes sense that a research facility would put the subjects on a low-tyramine diet, just to keep variations in tyramine intake from screwing up their results. Tyramine intake would matter to a normal person who is taking an MAO inhibitor, because the monoamine oxidase (MAO) enzyme is responsible for breaking down tyramine. If you inhibit the enzyme, you could get a tyramine "overdose" and end up with severely high blood pressure.

Yes. I know that. My husband's friend is a psychiatrist and suggested I ask my doctor about it. I haven't cross-examined him yet about why he thinks it would be useful in my case, but he has seen me have a migraine attack. I think he knows that I don't have any seizure disorder, or bipolar disorder, or depression. The psychiatrist thinks that lamotrigine has some useful properties that haven't been clarified yet. So I looked it up and found that it is a preferential inhibitor of neuronal nitric oxide synthase (nNOS). I found an article in JPET that says that in rats, nitric oxide presynaptically inhibits neurogenic norepinephrine release to modulate adrenergic neurotransmission. Okay, so it has some effect on the system that has gone wonky in my case. But I think it might make it worse, not better, because the prescribing information says that adverse events include (infrequently) postural hypotension, syncope, tachycardia, and vasodilation. So I think I'll steer clear of it unless I hear from other POTS patients that they have had good luck with it.

I usually get it at a local, independently owned health food store. If they're out of it, I get it at Whole Foods.

It's supposedly good for migraine.

I get licorice root teabags from the health food store. I've also used licorice extract. Either one works, as long as it has the glycyrrhizin in it. Don't get deglycyrrhizinated licorice. You would need the glycyrrhizin in order for licorice to have a Florinef-like effect. I usually have at least one or two cups a day. I take more if I'm having trouble with tachycardia. Here's a useful link that explains what licorice does: http://arbl.cvmbs.colostate.edu/hbooks/pat...l/licorice.html Notice that it causes low plasma concentrations of potassium. If you think about using licorice, talk with your doctor and make sure to monitor your potassium levels. If you use licorice, make sure to eat lots of potassium-rich foods.

I pretty much accept the fatigue as a given and ruthlessly prioritize my activities. Okay, so I prioritize them badly and end up wasting my energy on my job and shortchanging my personal life. But at least I have health insurance for the time being. Besides prioritizing, it helps to figure out lower-energy ways of doing things. For example, make out the shopping list but let someone else do the shopping. Sit down to do the preparation work for cooking. I find it handy to use a crock-pot, because I can just put the ingredients in and turn it on. No standing. You might find it helpful to trade chores with other people. Let them do the standing up chores, you do the sit-down ones.

Hi Lauren: Here are some interesting links that may be useful: A study of identical twins with lifelong cases of POTS showed that a problem with the norepinephrine transporter can cause POTS http://www.ncbi.nlm.nih.gov/sites/entrez?D...Pubmed_RVDocSum If the gene for the norepinephrine transporter is switched off, the patient may end up with panic disorder, or POTS, or both: http://www.ncbi.nlm.nih.gov/sites/entrez?D...Pubmed_RVDocSum

You don't necessarily lose consciousness with a focal (Jacksonian) seizure, but that would involve shaking or weird sensations etc. in just a limited area of the body. So, as Doctorguest explained, if you were shaking all over and still conscious, it's not a seizure.

Your gastroenterologist should have a printed handout on this. Basically, it probably doesn't matter, because the bowel prep will clear you out.

Allergies must be aggressively managed in people with POTS. It says so somewhere on the POTSPlace Web site. That in itself should be a reason for a referral. Can you explain to the GP that you won't be able to solve the POTS-related disability problem unless you solve the histamine problem? If the GP still resists, can you get a different GP?

Hi Flop: Actually, among the drugs you listed, only acrivastine is truly an antihistamine. Technically, an antihistamine is a drug that blocks the H1 type of histamine receptor, which is responsible for the symptoms of allergic rhinitis. (H2 receptors are responsible for triggering the release of stomach acid.) Cromoglycate, which is called cromolyn in the United States, is a mast cell stabilizer: it prevents the histamine from being released from mast cells, rather than blocking the effect of the histamine at the target cells. Singulair is a leukotriene receptor blocker. So all three drugs work in completely different ways. Therefore, you are not combining different kinds of antihistamines at present. I don?t know whether it would do you any good to do so. If I were you, I?d see a specialist. Maybe if you could find out what you are allergic to, you might be able to use some nonmedical approaches to avoiding the allergens. You might not be a good candidate for allergy shots, because of the POTS.

Too much oxygen is toxic. I would avoid the hyperbaric chamber unless there was some real evidence that it would be beneficial for what I have--or failing that, that the treatment is part of a real research protocol, approved by an institutional review board. I certainly don't want to be experimented upon by someone without proper training and no supervision. I'd be willing to be a research subject, but only if real science is being done and if the risks are reasonable.

Chronic fatigue syndrome means more than just chronic fatigue. In fact, Dr. Cheney calls it CFIDS, for chronic fatigue and immunodeficiency syndrome. If you don't have the additional symptoms that make up the syndrome, then you don't have CFIDS. You can have chronic fatigue as a result of another illness, such as POTS. If you have chronic fatigue for no know reason it is called idiopathic chronic fatigue. (Idiopathic is doctor-speak for "of unknown cause"). Back in 2003, some researchers at UMDNJ found that people who are severely disabled with CFIDS all had a form of heart failure. Their hearts couldn't relax properly between beats (which, surprisingly, is the most energy-consuming part of the heartbeat). As a result, their cardiac output (volume of blood being pumped per minute) was very low. In POTS, the heart may not be able to refill between beats because the blood isn't getting back to the heart fast enough (e.g., because of low blood volume). So the result, in terms of how the person feels, would be similar in some respects in both cases. As for working, I have been able to work throughout this POTS ordeal because I have a very sedentary job. I can do desk work all day long, but a few minutes of light housework would wear me out, because of the orthostatic stress involved.

Here's a link to the Zung Self-Rating Depression Scale: http://www.medalreg.com/qhc/medal/ch18/18_...04-03-ver9.php3 Notice that some of the questions relate to autonomic nervous system symptoms and health-related quality of life issues. So if you are exhausted all of the time, and your heart is racing, and you are constantly fighting dizziness and lightheadedness, and you don't enjoy the things you used to do, because you can't do them anymore, that all adds to the score, even though your problem is purely circulatory. To say that you therefore are depressed is to stretch the concept of depression completely out of shape. This scale is useful for rating how depressed someone is if he or she is depressed, but I question its validity for diagnosing depression in someone with an autonomic nervous system disorder.

Did the doctor run a blood volume test before prescribing the Florinef? Dr. Bell described a case in which a patient with a severe volume deficit (not enough blood to go 'round) nevertheless had high blood pressure. When they gave that poor soul some intravenous fluids, the pressure came right back down to low normal. But they had just measured his blood volume, so they knew what they were dealing with. Do you have a blood pressure cuff? Maybe you could monitor your blood pressure lying down, sitting, and standing up several times a day for a few days before starting the Florinef. If you think that your doctor's nurses aren't passing along information properly, you might consider writing your questions to him in a letter. Indicate at the bottom of the letter that you are sending a carbon copy of the letter to someone with a different surname than yours. It could be your sister or your best friend, whatever. But the people at the doctor's office might think it is a lawyer. One possible reason for the midodrine to be failing you is that your POTS is flaring up. By any chance, are you having a flareup of allergies right now? That's the usual culprit, in my experience.

Here's a good review of sphincter of Oddi dysfunction: http://www.ercp.ucla.edu/pages/info/biliar...ysfunction.html

Where on the body is the hyperpigmentation? You can get darkening on the face if you are taking birth control pills or are pregnant (the "mask of pregnancy"). Insulin resistance can cause acanthosis nigricans, which causes darkening of the knees and elbows and areas where the skin creases or is subject to cbafing. Addison's disease can cause a fake suntan, as a result of the high levels of ACTH that your pituitary makes to kickstart your underactive adrenals. The fake suntan and the fact that Addison's disease makes you pee like a racehorse is why it was once called "bronze diabetes." It's easy to test for Addison's disease, and the treatment is hormone replacement: mainly Florinef, which they give to people with POTS anyway, and cortisone-type drugs.

I tried to sign up for a clinical trial of it but didn't fit the protocol. I think they were looking for people who had low levels of norepinephrine. My norepinephrine levels go way up when I stand up, so the problem wasn't a problem in secreting norepinephrine. I think the drug is being developed for multiple system atrophy, not POTS. L-DOPS is a precursor to norepinephrine. In other words, your body has to go through a several-step recipe in order to make norepinephrine. Some people are missing one of the enzymes necessary to perform one of the steps. L-DOPS is like having all but the last step done for you. It would get around the problem of the missing enzyme. http://www.sinaionsitehealth.org/neurology...trials/chronic/

Interesting. There seem to be published studies supporting its use. One caveat: The Butterburresearch.org Web site has a link that says "FDA approved." But when I clicked on it, it showed that the manufacturing facility has been registered with the FDA. This is NOT the same thing as a drug being FDA approved, which means that the drug has gone through the whole gamut of phase I through phase III clinical trials. When I looked up Petadolex in www.fda.gov, I found that they got a warning letter in May 2002 for making unsubstantiated drug claims. There was also correspondence from the company saying that the product should be classified as a dietary supplement, rather than a drug. So they can sell it, but they have to be careful of what claims they make about the product. Unfortunately, it costs a lot of money to do the studies required for FDA approval, and I don't think that this product is patentable, so the proper studies might not get done. Still, this sounds interesting, and cheered me up immensely.

When I was very very sick, my doctor (a nephrologist) did a 24-hour urine test for aldosterone metabolites. My values were over 8 times the upper limit of normal. I hoped that that would give us some sort of clue, but he said that it was probably just a response to the hypovolemia. In other words, my adrenal glands were trying to correct the low blood volume. I think the aldosterone metabolite levels went way down after I started with the salt loading and the Florinef.

Here's one. Not the same kind I have, but the same general idea: http://www.activeforever.com/p-1145-drive-...-seat-cane.aspx