lthomas521

Have you had a blood volume measurement? If the swelling in your hands and feet is bad, maybe they could give you an albumin transfusion? That's occasionally done for people who are really sick with POTS. The albumin holds the water inside your blood vessels. Both cortisol and aldosterone are steroid hormones produced by the adrenal glands, which are on top of your kidneys. They are called "steroid" because they are built on the same basic structure, which is a set of carbon atoms arranged in four rings. However, they have somewhat different properties (estrogen and testosterone are also steroid hormones, with distinctly different properties). Basically, the steroid ring structure is like the key blanks that you see at the hardware store. The other atoms stuck onto the steroid ring structure make it a key that fits a particular lock. Aldosterone is a "mineralocorticoid," which means that it tells your kidneys to reabsorb salt that you would otherwise lose in urine. Cortisol is a "glucocorticoid" because it encourages the body to break down amino acids and fats and turn them into blood sugar. This is why your blood sugar can go way up when you are taking cortisone or similar drugs (e.g., prednisone). Cortisol and similar glucocorticoids are also useful as drugs because they reduce inflammation and suppress the immune system. Cortisol would also act like a mineralocorticoid (i.e., help you retain salt), except that there's an enzyme in your kidney that breaks it down before it can attach to the receptor there. Licorice deactivates that enzyme and allows cortisol to act as a mineralocorticoid. That's why licorice can cause blood pressure to increase, and which is why I'm drinking a cup of licorice tea as I write this. Fludrocortisone (sold under the brand name Florinef) is a synthetic mineralocorticoid. It works like aldosterone, and supposedly has minimal glucocorticoid effects in most people. When the adrenal glands stop producing aldosterone, the result is a disorder called Addison's disease. Hormone replacement, with Florinef and cortisone, are life-saving for people with Addison's disease. For people with POTS, Florinef is used to try to boost blood volume and therefore blood pressure, even if there isn't a deficiency of aldosterone to begin with. This is very helpful for a lot of people, and many people tolerate it pretty well, but you have to be careful to eat plenty of potassium and maybe take a magnesium supplement. An excess of cortisol results in Cushing's syndrome, which causes weight gain (pot belly, "moon face," and "buffalo hump"), thinning of the skin, and hirsuitism (male-pattern hair growth). Cushingoid signs and symptoms can also result from using drugs that have a glucocorticoid effect. In the short run, I'd pay attention to blood sugar levels. In the long run, I'd look for weight gain and loss of bone density.

http://en.wikipedia.org/wiki/Stendhal_syndrome Stendhal syndrome or Stendhal's syndrome is a psychosomatic illness that causes rapid heartbeat, dizziness, confusion and even hallucinations when an individual is exposed to art, usually when the art is particularly 'beautiful' or a large amount of art is in a single place. The term can also be used to describe a similar reaction to a surfeit of choice in other circumstances, e.g. when shopping. It is named after the famous 19th century French author Stendhal (pseudonym of Henri-Marie Beyle), who described his experience with the phenomenon during his 1817 visit to Florence, Italy in his book Naples and Florence: A Journey from Milan to Reggio. Although there are many descriptions of people becoming dizzy and fainting while taking in Florentine art, especially at the Uffizi, dating from the early 19th century on, the syndrome was only named in 1979, when it was described by Italian psychiatrist Graziella Magherini, who observed and described more than 100 similar cases among tourists and visitors in Florence. The syndrome was first diagnosed in 1982. A psychosomatic reaction to exposure to art? Or the natural result of standing on your feet in an art gallery when you have dysautonomia? I would get an attack of Stendahl syndrome (sans hallucinations, fortunately) in any art gallery, even if the art were not particularly beautiful. I also get it when shopping, even when there isn't really much to choose from.

My personal theory is that POTS causes migraines, because our nerve cells are not reabsorbing and recycling norepinephrine as they are supposed to. When they eventually run low on norepinephrine, wham! Migraine. Dr. Esler's group down in Australia has shown that people with POTS don't have norepinephrine transporters to reabsorb and recycle norepinephrine. According to an article by another researcher: http://www.ncbi.nlm.nih.gov/entrez/query.f...t_uids=14979884 "Specifically, it is suggested that a migraine attack is characterized by a relative depletion of sympathetic norepinephrine stores in conjunction with an increase in the release of other sympathetic cotransmitters such as dopamine, prostaglandins, adenosine triphosphate, and adenosine." In normal people, beta blockers are used to prevent migraines. http://headaches.about.com/od/medicationpr...ta_blockers.htm But I still got them even when I was on Toprol XL.

They found nothing, which is good. I had one because of a family history of colon cancer, on both sides of the family.

Thiamine, 500 mg per day. I don't know why, but it seems to be the most important thing for me. Other B vitamins helped, too.

A friend of mine has had to eat lots of extra salt to manage his neurocardiogenic syncope. Recently, however, he had to go to the hospital and then a step-down unit for an unrelated problem. Unfortunately, the staff at the step-down unit had been trained to keep everyone on a low-salt diet. They ignored his pleas for salt until he really couldn't stand up anymore. If you have to go to the hospital or a convalescent facility for any reason, bring a nice, visible placard, signed by your doctor, that says something like "Please give this patient as much salt as she (or he) wants. When in doubt, give extra fluids."

Maybe not. A patient can have as many diseases as he darn well pleases. Are you sure it isn't poison ivy? 'Tis the season for it. If it's poison ivy, you might get some relief from Tecnu, an over-the-counter two-part product. Don't use that unless you're sure it's poison ivy, though. It might make eczema worse.

Yes, I will have one again, by the same doctor, because he knows from experience what my problems with anesthetics are!

I think I would try a beta blocker before a tranquilizer, for excessive "startle" in POTS. The beta blocker will probably work better, and it's not habit-forming. Magnesium supplementation might also help. Magnesium deficiency causes excessive "startle" responses. If you are taking Florinef, you probably need a magnesium supplement.

Or it could be paroxysmal supraventricular tachycardia, a more common diagnosis with an equally forgettable name. The possibilities are endless.

You're not supposed to take pseudoephedrine when you are taking midodrine. Ask the pharmacist.

The sweating is an autonomic nervous system thing. It can happen even if you don't feel anxious. If it's bad, there's a prescription antiperspirant called Drysol.

Some antidepressants are relatively activating, which could explain why you had trouble sleeping. Some are relatively sedating and might improve the quality of your sleep. So maybe they can find one that will work for you. The liver damage may limit your options, however. I hope you feel better soon.

If your tachycardia is due to electrical conduction problems within the heart, as opposed to low blood volume, then Yaz or Yasmin might pose no particular problem for you. But anyone who is a candidate for Florinef should probably not take Yaz or Yasmin, which have "anti-Florinef" activity. The package insert says that it shouldn't be prescribed for women with adrenal problems.

It could be rebound headache. Mention this to the doctor. http://www.stoppain.org/pain_medicine/cont...ain/rebound.asp

Both Yasmin and Yaz contain the diuretic drospirenone. So they sound like a really bad idea for someone with POTS.

You've lost 4 inches in height?! Definitely have the bone mineral density study!

Do you mean Yasmin? Yasmin contains drospirenone, which has "antimineralocorticoid activity," which means that it makes you lose water and salt through your kidneys! This means that it does exactly the opposite of what Florinef (fludrocortisone) does. According to the prescribing information, taking Yasmin is equivalent to taking 25 mg of the diuretic spironolactone (Aldactone). http://berlex.bayerhealthcare.com/html/pro...c/Yasmin_PI.pdf Why on earth do doctors keep prescribing a pill with a diuretic in it to women who are already disabled because they are hypovolemic? It makes no sense to me.

Here's an article from American Family Physician that puts the risks of combined oral contraceptives (COCs) in perspective: http://www.aafp.org/afp/20061201/fpin.html Of course, your personal risk might be different if you have very unstable blood pressure or a family history of clotting disorders or if you smoke. COCs reduce your risk of ovarian cancer, which is a particularly deadly form of cancer, by about 40% and also reduce your risk of endometrial cancer. http://www.ncbi.nlm.nih.gov/entrez/query.f...l=pubmed_docsum The risk of cervical cancer is higher in women who use the pill for contraception, but that's almost certainly because they are not using condoms and therefore are exposed to the human papillomavirus (HPV). There is currently an HPV vaccine available for young women.

Here is a link to a consensus document from the Infectious Diseases Society of America about how to treat Lyme disease. It discusses not only the recommendations but the evidence behind the recommendations. http://www.journals.uchicago.edu/CID/journ...2033763662Guest A lot of patients seem to do well with oral antibiotics, and even the patients on injectable ("parenteral") antibiotics seem to be taking them for 28 days or less, usually around 14 days. How long have you had this PICC line? Are you sure that you still have active Lyme disease? Is it the only thing you have? You could have gotten more than one infection from the same tick, or you might have some other disease lurking in the background that is making the whole situation worse. Going back to Cleveland or Mayo sounds like a really good idea to me.

Your cardiologist said that it is impossible to have low blood volume? He's totally wrong. It's actually common in people with POTS and chronic fatigue syndrome. That's why we take the Florinef or licorice. I have patiently explained until I was blue in the face (okay, I was already blue in the face to start with) about blood volume issues to several doctors. If the cardiologist is incapable of learning, go to a nephrologist. They know about blood volume. http://www.ncbi.nlm.nih.gov/entrez/query.f...l=pubmed_docsum http://www.ncf-net.org/library/Bell-StreetenJCFS1998.htm http://www.daxor.com/

Expand your blood volume (salt and water loading, Florinef, or licorice) and wear pressure stockings. Maybe midodrine would help.

No it's not healthy. Have they measured your blood volume? You could be severely volume depleted. How much salt are you consuming per day? How much water? Are you using waist-high pressure stockings?

Yes. Anxiety can be a result of the same weird switched-off gene problem that is the likely cause of POTS. http://www.ncbi.nlm.nih.gov/entrez/query.f...l=pubmed_docsum To understand this, you need to know a little about the nerve synapse. The nervous system consists of separate cells that are separated from each other by gaps called synapses. http://faculty.washington.edu/chudler/synapse.html Nerve cells send messages along by secreting chemicals called neurotransmitters into these synapses. http://faculty.washington.edu/chudler/chnt1.html The neurotransmitter can continue to act until it leaves the synapse. Some diffuse out, some are broken down by enzymes, and some are transported back into the cell that secreted them. http://faculty.washington.edu/chudler/chnt1.html#tran Esler and coworkers have found that in most patients with POTS, the norepinephrine transporter, which is responsible for norepinephrine reuptake, is missing. It is missing because the gene that carries the recipe for making it has been switched off. It's as if the cells have the recipe to make norepinephrine transporters, but they can't read that page of the cookbook. If you don't have these norepinephrine transporters, you may have an anxiety problem, or you may have POTS, or you may have both. But in this case, both the POTS and the anxiety problem are the result of the gene being switched off. The anxiety didn't cause the POTS.

There are lots of possible causes of shortness of breath. http://www.nlm.nih.gov/medlineplus/ency/article/003075.htm