lthomas521

The experiences that people are describing might be part of a migraine aura. You don't necessarily get a headache afterward. You may or may not have visual disturbances.

I'm fortunate that I can go nearly car free. I found a job that is on the bus line near my house. I walk a block, sit down at the bus stop, ride the bus, and get off right at the building where I work. If I have to work late, I can walk two blocks, take the train, and then walk a little over half a mile home. (I guess I could call my spouse and ask for a ride from the train station). Sometimes I can't really tolerate that much exercise and I'm bedridden on the weekends.

its not like you have a disability or something like those people who have parkinsons or are limbless!

Before I got my POTS diagnosis, one of my doctors tested me for lupus, and the tests came back negative. A friend of mine who has lupus and lost a leg because of it was disappointed when my tests came back negative. I said, "You want me to have lupus? But you lost a leg to it, and it almost killed you." She said, "Yeah, but lupus is treatable, so I'm much higher functioning than you are now." So there you have it. A person with lupus and a below the knee amputation said that I was far more disabled than she was. And that's before my POTS got really bad.

Make sure that you are lying down for the test, especially for the part where they take the huge blood specimen for tagging the red cells. The last time I had the test, I "fell asleep" (i.e., passed out) when they took the specimen out and "woke up" (i.e., came to) when they put it back.

In drug research lingo, an "adverse event" is any undesirable thing that occurs in someone who s taking a drug. It may or may not be a result of taking the drug. In a clinical trial, the investigator may be asked to guess whether a particular event in a particular patient is probably, possibly, or unlikely related to study drug. Calling something a "side effect" means that you are pretty sure that it results from taking the drug.

If an antibiotic makes you itch, definitely tell your doctor. Allergic reactions to antibiotics can be serious.

Chest pains are a good reason to go to the doctor or emergency room, right away.

Chest pains can result from all sorts of things (e.g., esophageal spasms). In POTS, chest pain can result from the heart "beating on empty chambers": when your heart is beating too fast for the atria and ventricles to fill up with blood between beats. Nature's way of telling us to drink salty beverages and lie down, I guess.

Calcium channel blockers are used to treat hypertension, but they are generally not the first choice for the treatment of hypertension. They reduce blood pressure by relaxing the smooth muscle in the blood vessels. They can also decrease heart rate and can be useful in treating some forms of irregular heartbeat. However, it doesn't sound as if they would do me any good. I really don't need anything to relax my blood vessels any further. I already have hypovolemia. The last thing I need is vasodilation on top of that. If I had that together with a slower heart rate, I'd get very very sick, because my heart couldn't speed up to compensate for the vasodilation.

On the other hand, your situation might be totally different. Why does the doctor think that a CCB would help you? Is your problem a heart rhythm defect, rather than regular POTS?

One other thing: In men, some calcium channel blockers disrupt sperm production, almost effectively enough to be a useful contraceptive.

What in particular does your doctor think is wrong with your diet? And how does he or she think it relates to POTS?

I really like the Allegro support hose from Bright Life Direct (http://www.brightlifedirect.com)

They have loose-fitting toe caps, so they don't put painful pressure on my pressure-sensitive, incurvated big toenails. (I had to cut open the toes of the other brands of pressure stockings.) The Allegro stockings are also easier to put on and take off than some of the others I've tried.

For me to get any real benefit, they have to be 30-40 mm Hg and waist high. I've done a tilt table test with and without them, and it makes a measureable difference. However, I still qualified for a POTS diagnosis with them on.

Hi Babette:

Have you been tested or celiac disease? It seems to be very common among people with POTS. It is extremely common among people with gallbladder disease. It causes chronic diarrhea, among other things.

http://www.celiac.org/

http://www.celiac.com/index.html

How major is major? What have you tried? Have you talked to your pharmacist as well as your doctor. Have you stopped eating cheese? Cheese and iron supplements can really bind you up.

Could be fibromyalgia. You might want to ask about B-12 shots. Vitamin B-12 is apparently a scavenger of a nasty chemical that your body might produce too much of under stress and that has been implicated in fibromyalgia. B-12 shots are cheap and might be worth a try.

Hi Laura:

You might want to bring some articles with you about how disabling POTS is. If the person you are going to see is a psychiatrist, that means that he or she is also a medical doctor. If you have had a positive tilt table test, you may want to bring the records from that, to show that your problems are due to a circulatory disorder secondary to an autonomic nervous system problem.

If I were you, I'd ask the pharmacist, as well as the doctor, about whether the dopamine levels could be a result of the Wellbutrin. If Wellbutrin is blocking dopamine reuptake, then maybe the dopamine will "spill over" into the systemic circulation, just as norepinephrine does if there is impaired norepinephrine reuptake. Definitely ask the pharmacist. You can also call the drug manufacturer's information line and ask them.

How did they document the denervation and small fiber deficits?

I don't know for sure whether I have an NET deficiency or not.

Even if you have normal numbers of norepinephrine transporters, you can end up with orthostatic problems if you take a drug that blocks norepinephrine uptake. So the question is the number and function of the transporters.

Supposedly, the people at Baker Institute in Australia have addressed all these. We're all still waiting for their report.

At least in rats, iron deficiency reduces the concentration and function of the norepinephrine transporter.

http://www.ncbi.nlm.nih.gov/entrez/query.f...l=pubmed_docsum

If you are having problems with midodrine, you may have to adjust the dose. My doctor started me on a very low dose and then increased it.

I get noticeable goosebumps, but that just reminds me that I did in fact take it that morning. I don't take it every single day. I only take it first thing in the morning, because mornings are my worst time.

I don't think I've ever gotten a migraine when I've had midodrine on board.

Hi Amber:

Glad to hear that you are feeling better.

Lots of people who have fatiguing illnesses feel worse, not better, if they try to "work out." The myth that POTS results from deconditioning is still widely held. It's derived from the notion that there's nothing really wrong with us and that we would recover if we just straightened up and flew right. The problem is that we can end up wasting our limited energy by doing pointless workouts.

You might be losing weight because your overall activity level has increased because you are doing activities that you can do at a reasonable pace, instead of flogging yourself to keep up to a workout pace.

Does your doctor know how fast you are losing weight? My doctor was actually pleased when I gained a few pounds (but I was never overweight).

What you are describing could be a "rebound headache."

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

One of the subtypes of fatigue involved "heart rate variability"? Does that have anything to do with POTS?

Anyone with gallbladder problems should be tested for celiac disease.

There's an interesting theory that extra B-12 might be beneficial for people with CFS or fibromyalgia, because the B-12 acts as a nitric oxide scavenger.

http://molecular.biosciences.wsu.edu/facul...ll/pall_cfs.htm

For me, the lifestyle changes break down into 2 categories:

(1) Salt & water loading and taking my medications right on time every day, without exception.

(2) Budgeting my activities. Know how much exercise you can tolerate, and don't squander your energy on pointless, exhausting activities if you don't have enough energy to do your activities of daily living. It's silly to try to "exercise" on a treadmill or exercise bike if you don't have enough energy to carry your laundry down to the washing machine. Do your laundry for exercise. At least you'll have clean clothes! Readjust how you do your activities so that you don't waste energy pointlessly. For example, let someone else do the grocery shopping, because that involves lots of standing. If you cook, sit down at the kitchen table to do most of the prep work (e.g., chopping vegetables). I like to use the crock pot, because I don't have to hover over it. Just load it up, turn it on, and crash on the couch. I have a high barstool type of chair to sit in at the stove. If I have to do something strenuous, I schedule it for late in the day. Otherwise I'm setting myself up for a disabling migraine.

I swear by cromolyn sodium (Nasal-Crom). It is not an antihistamine, it is a mast cell stabilizer. It makes the mast cells less likely to release histamine. It is a nasal spray, but it is not a decongestant. It is not habit-forming, and it doesn't interact with anything that I know of, so you can use it in combination with other things. It's available over-the-counter. It will take a few days before you'll feel an effect from it, but it really helps me during juniper pollen season.

http://www.drugs.com/cons/Nasalcrom.html

This is a good question for the pharmacist, as well as for a pain specialist. From what I understand, it's usually over-the-counter drugs that are responsible for rebound headache. The headaches will probably get worse for a while after you quit the drug. I doubt that switching to another drug in the same therapeutic class would help avoid rebound headache. I'm not even sure that switching to another drug will give you much relief from rebound headache. You may just have to suffer through the rebounds until you break the cycle. The real question is whether you really have rebound headache. http://www.stoppain.org/pain_medicine/cont...ain/rebound.asp

If you ask for a whole assortment of different painkillers, especially if you ask for them by name, the doctor and pharmacist might start to wonder whether you are taking the stuff yourself or, um, "diverting" it. So be careful what you ask for. The last thing you need is for your doctors to refuse to give you pain meds because they don't trust you.

If you have migraines, perhaps the best thing is to keep a headache diary to see if you can identify what triggers your headaches. For me, the triggers are failure to eat my entire salt ration, spending too much time on my feet, too much exertion too early in the day, and doing something that involves a lot of bending over.

If you are worried about addiction, it may be helpful to review these definitions of related terminology.

http://www.asam.org/pain/definitions2.pdf

People who need opiate pain relievers for an extended period typically become physically dependent on them and suffer withdrawal symptoms when they discontinue taking the drug. That is normal and not evidence of addiction. Notice that the definition of addiction includes "use despite harm."

Switching from one opiate to another will not prevent addiction. Fortunately, the risk of addiction seems to be low in people who have moderate to severe chronic pain and no prior history of addictive disorders.

Yep, I was confused by what she said too, because I'd always heard and read the opposite. My geneticist did tell me there can be spontaneous mutations, which makes sense...but multiple kids with a spontaneous mutation doesn't make sense. Hmmm...

It can happen as a result of mosaicism. In other words, the mutation occurred in one of the cells in the embryo. The cells that resulted from the division of that mutated cell would have the mutation. So the person's body would consist of a mixture of normal and mutated cells. If only a small portion of the body's cell population contains the mutation, the person might look and feel normal. However, if the gamete-producing cells in the testes or ovary have the mutation, the person can pass the mutation on to more than one child. That's how researchers were able to find the gene for Cornelia deLange syndrome.

The other possibility is that the genetic disorder has incomplete penetrance. In other words, the disease can occur in someone who has only one copy of the defective gene, but there are other factors that could prevent that gene from being expressed. These factors could include the actions of other genes or some environmental factor. For example, if you have the genotype for celiac disease but never eat any gluten, you won't suffer from celiac disease.