DeGenesis

I feel lucky that as a man if I feel too hot in public I can just take my shirt off.

Anything that involves bending over.

Standing still is the worst thing I can do. Walking is probably the best.

Dehydration can be sometimes present on a blood test as elevated hemoglobin. Your doctor can order a CBC to check this. Keep in mind that hypovolemia is not the same as dehydration and often does not show up on a blood test, although dehydration can cause hypovolemia. If you go to the ER and say that you think you are dehydrated, I doubt that you will be refused IV saline. Sometimes doctors worry that in older patients IV saline will cause fluid overload and edema, but if your kidneys are healthy you should be able to handle a 1 - 2 L bolus easily (although you will pee a lot). You will know very quickly at that point if dehydration and/or hypovolemia are the cause of your symptoms. If you don't want to go see a doctor, electrolyte packets that you dissolve in water or Pedialyte are often more effective for rehydration than just water. Glucose and sodium are needed for water to be absorbed in your gut.

You say that you do not faint (syncope), but do you have pre-syncopal symptoms such as light-headedness, slowing of speech, and blurred vision? It is important to emphasize the impact that your symptoms are having on your QOL and your ability to perform "activities of daily living" (doctors love that phrase). If it has impacted your work or schooling, be sure to place particular emphasis there. If the cardiologist doesn't know what's up, make sure you don't walk out of the office without an additional referral, perhaps to a neurologist with experience in treating in orthostatic intolerance.

The ignorance of many cardiologists to the pharmacology of many commonly used drugs in cardiology and related fields of medicine is somewhat baffling to me.

Search google for "SSRI start-up". Most people feel increased anxiety and various physical symptoms in the intial weeks of SSRI therapy. Zoloft (sertraline) might not be the right SSRI for you, depending on your "type" of POTS. It is has non-insignificant alpha-1 antagonist properties, which is expected to make blood pooling worse. The increase in the standing vasocontrictor reflex induced by SSRIs may counteract this.

This goes back to the gorilla in the room: Are these biochemical changes compensatory or maladaptive? As much as it is said that you must find your sub-type of POTS, I think that trialing drugs until you find something that works for you is a valid approach. Some people have had success with ARBs.

Here is an interesting video linking EDS with Chiara malformation, POTS, and CFS. Thanks to Issie(?), who I believe is active on this forum, for posting it on a popular CFS forum. http://vimeo.com/71903707

I am not sure if you are describing bruxism or something else. High levels of catecholamines are associated with bruxism.

POTS/FM/CFS/ME and many interrelated conditons have been associated with autoantibodies to various receptors, including those related to the ANS and found in this study. It is an important step forward, but don't expect too much in the near future. Findings such as these have been known in CFS/ME and FM for years and there are still no large trials examining the effects of drugs used to treat autoimmune disorders in said conditions.

Beta-blockers improve my symptoms. They normalize my BP and HR. Unforunately they impair circulation in my peripheries, probably by increasing peripheral resistance, thus causing cold as well as aching arms and legs. Nebivolol is the only B1-selective beta-blocker that appears to decrease peripheral resistance, but I have not tried it. Non-selective beta-blockers like propanolol increase peripheral resistance more so than B1-selective beta-blockers, and I expect this is part of its MOA in POTS.

I notice that I have less palpitations and chest pain when I lie on my right side, or facing upright. Unforunately this position worsens my GERD.

One explanation for this particular experience of yours is that when you stand up, a massive amount of norepinephrine is being released, causing vasoconstriction and high blood pressure. When you sit or lye down again, it will take some time for your HR and BP to return to basline. Have you ever had a standing norephinphrine test? When I go from a standing to laying down position I always do it in steps. This is why I encourage people to see themselves as having dysautonomia, instead of just POTS (if that is your diagnoses). POTS is just one presentation of dysautonomia.

Florinef (fludrocortisone) acts indirectly as a vasconstrictor by increasing the sensitivity of peripheral alpha-receptors. Florinef increases plasma volume. This can help indirectly with venous pooling because while blood is pooling in your extremities, there is more reserve to perfuse your upper body. Florinef gave me heaches while laying down that were only relieved by elevating my bed. It also gave me high blood pressure. When is your blood pressure high? If it is only high when standing (orthostatic hypertension), then Florinef, as well as IV saline and salt loading, can be beneficial because hypovolemia can sometimes paradoxically cause high blood pressure due to excess sympathetic activity triggered by low cerebral perfusion. This approach definietely requires close observation by a doctor as well as at home BP monitoring. Hope this helps.

Hi Janet, I have seen this Levine article as well. I have often wanted to use it due to its succinctous, but the Levine angle plays too prominent a role in it. I do strongly believe that deconditiong and exercise are critical factors in the pathogenesis and treatment of POTS, respectively, but they are not the whole story, as I'm sure most here will agree. I know that if I gave that article to some doctors they will immediately zone in on the "Exercise" section, and ignore the rest of the article.

The Mayo Proceedings article is fantastic. Thank you and thanks to all of you who posted links.

Thank you for your warm welcome. I have just found a review by S Carew 2009 in Europace. It seems very good.

Hopefully also this paper should emphasize the possibility of orthostatic hypertension. When doctors test me and my blood pressure rises, this is usually the time when they give up mentally trying to figure it out.

Edit: Grubb 2008, I should say. Hello there, I am very pleased to be here. I have an appointment today and I was wondering what literature you give to your doctors? This doctor, like many others I meet, is ammenable particularly to journal articles. This is a good sign in a doctor since they are open to widening their scope of knowledge. If your doctor is not interested in medical journals, that is a warning sign that they will stagnate a few years post medical school. I have been using the Grubb review from 2008, but it is becoming dated. Is there anything newer people have been using. I have continued to use it because it is published in Circulation, which has some pedigree. Thank you