firewatcher

Let me know when, and I will be there too!

What if the "dumping" polyuria is the brain's mistaken attempt to increase serum sodium levels to compensate for a sodium-channel glitch? Could this be why propranolol works at such a low dose for many of us?

I do not salt load like most of you, I only take in enough to counteract the effects of the dDAVP. I am actually on a low-sodium diet based on the current medical viewpoint.

I only eat meat once a day, and then only a piece 1/2 the size of my palm. I limit my protein to protect my kidneys, but I was vegetarian in my teens.

My acupuncturist would be all over this one. What you are experiencing is known as "tongue fur." It is "normal" except for the color, which would indicate "heat" in your system. He would have you eat cooling foods to clear the heat...according to Chinese medicine.

According to Western medicine...you simply have bacteria that is causing your tongue to be yellowish and your dentist would recommend you brush your tongue.

My tongue fur was white, there are some nasty/cool pics on the web if you google tongue fur...

Cath_UK, I looked up sodium channel blockers based on your post and found this info:

Sodium channel blockers are agents that impair conduction of sodium ions (Na⁺) through sodium channels.

Sodium channel blockers are used in the treatment of cardiac arrhythmia. They are classified as "Type I" in the Vaughan Williams classification.

Class I antiarrhythmic agents interfere with the (Na⁺) channel. Class I agents are grouped by their effect on the Na⁺ channel, and by their effect on cardiac action potentials. Class I agents are called Membrane Stabilizing Agents. 'Stabilizing' refers to the decrease of excitogenicity of the plasma membrane effected by these agents. A few class II agents, propranolol for example, also have a membrane stabilizing effect.

Membrane stabilizing effects involve the inhibition or total abolishing of action potential from being propagated across the membrane. This phenomenon is common in nerve tissues as they are the carrier of impulses from the periphery to the central nervous system. Membrane stabilization is the method through which local anesthetics work. They block the propagation of action potentials across the nerve cell thereby producing a nerve block.

http://www.sciencedaily.com/releases/2011/12/111214144751.htm

While this article is not about POTS, the heart brain connection is clearly there. What if the salt that is suggested is acting in a way other than increasing blood volume?

"Brain sends wrong message to heart

"We showed that the heart problems were actually secondary to nervous system deficits and that cardiac activity can be remolded by abnormalities in brain activity," said Neul. "Basically, the brain is sending the wrong message to the heart leading to the malfunction."

Taking a closer look at the heart cells affected by the nervous system deficits, researchers found an unusual persistent sodium current.

Sodium currents occur naturally in cell function. When there is cell activity, sodium travels in and out of the cell through a channel that acts like a window opening and closing. Unusual persistent sodium current means the "window" doesn't close properly, causing a slow trickle of sodium to flow through the channel for a longer period of time.

Seizure drug improves sodium problem

There are seizure medications that block this process, which also occurs in other neurological disorders. When Neul and his colleagues used an anti-seizure drug to treat these malfunctioning heart muscle cells in the lab, the sodium current problem improved. They then gave the common anti-seizure drug to the abnormal mice which corrected the heart rhythm problem and blocked sudden cardiac death."

There are parts that definitely missing in research and I think that a malfunction much like the one described will be the underlying issue for POTS.

Like Ramakentesh, salty things help as well as proper hydration. I also take "flat-breaks" where I get totally supine with my feet up on a chair for a few minutes. Getting up is still a pain, but my brain works better as long as get flat sometime during the day.

I have genetic Delayed Sleep Phase Disorder. It runs in my family and I got the lion's share of the genes! It was diagnosed by my wonderful sleep doctor and did not need a sleep study. I tried chronotherapy and light therapy at his direction and found out that I can shift my "phase" to a point and then no further. We have also found that the morning beta blocker and properly timed supplemental melatonin helps tremendously, along with a fairly strict schedule. Unfortunately, you have to start with your current waking time and slowly work your way back to "normal" hours, usually it takes a week to move back one hour. If you time the light and melatonin at the wrong time you can make your sleep schedule and autonomic system much, MUCH worse! It was my first attempt at circadian shifting that created my worst POTS hole! Also unfortunate, my doc has told me that my autonomic issues will probably not get better until my kids leave home and I can sleep according to my natural (genetic) rhythm. This is a really common disorder, and every teenager goes through it as part of a hormonal shift. The good news is, for almost all people it is treatable. The bad news is, that it is hard to keep the schedule!

I go regularly. I have had both insertion and non-insertion (Japanese) acupuncture done; both work. I also take Chinese Herbal formulas made by my acupuncturist. They are the closest thing that the world currently has to custom pharmaceuticals. Like any other medical professional, your results will depend on their level of experience and understanding.

For me, it has always depended on which medication. Before my symptoms more "controlled," I could take high doses of Klonopin or Ambien or other nervous system "downers" and they do very little. However, one Sudafed and it was off to the races! Now that I am on a good symptom regimen, I can finally get results from Ambien and far less Klonopin. Caffeine and other stimulants still push me out of whack, but as long as maintain some balance, I can get back to "normal" fairly quickly.

Normally, the plasma volume expansion will result in the generation of more red blood cells, but immediate correction will result in anemia. It showed up in the charts and graphs of the study and I had verbal confirmation when I went to Vandy. I am an odd duck since I have only plasma deficit and not the cellular deficit as well. With only plasma missing, it looks like polycythemia. The treatment for that is blood donation...not good with a deficit!

The Vanderbilt study that found low blood volume, found absolute low blood volume (too little blood in the system,) not just plasma volume. If the plasma volume was corrected, the patients were actually anemic. It won't show without a volume test, so bloodwork will appear normal, but you could actually be hypovolemic. The article is "The Renin-Aldosterone Paradox" by Raj.

You should see a Pituitary Endocrinologist, not just an endocrinologist. They will perform blood and urine tests and possibly an MRI, based on those, you may move to a water deprivation test (not fun!) A regular endocrinologist can do the other tests, but the "official" test, water deprivation, is usually done at a university hospital or specialized treatment center. Have you ever had a simultaneous blood and urine osmolality test done?

I get this too. Unmedicated, my HR will drop into the low 40's at night. When my doc saw that, he told me to not take a beta blocker at night. The body's circadian clock has a large part to do with this and the medical world is only beginning to scratch the surface of the impact it has on health. My symptoms are much better at night as well, but mornings have never been good for me.

My OB/GYN told me he suspects my pituitary is shot and my ovaries are just squirting what few hormones I have without direction. I'm truly hoping that this isn't the case. Maybe I'll know something soon.

I don't know yet about the anemia. I know I had a very high RBC and hemoglobin due to plasma volume deficit before all this happened. Once I stop bleeding or get to a "normal" hydration status, I probably will be. No idea on the heparin either, no one is doing any testing. I will be calling my endo tomorrow to see if I can move the appointment up...this is awful!

We tried that when I first started the Estratest, but it never had any affect on my cycles. There is some wonky pituitary thing going on.

The only real difference lately has been laxity in my pelvic ligaments, so much that my pelvis is separating...thus my EDS question.

I discontinued the Estratest when the Ob/GYN thought I might have fibroids. I was put on it initially because my hormone levels were so low. The only hormone that WAS in normal range was progesterone, so he felt safe in prescribing unopposed estrogen. I've also had quarterly blood draws to check estrogen levels and they have always been at low normal on Estratest. I stayed off it in hopes that the bleeding would stop, but it hasn't.

I already see an endo and I have labs drawn tomorrow. He's told me that I've been in perimenopause since the age of 30 (I'll be 40 in two weeks.) Up until this period, they had been getting progressively lighter and irregular. This one just won't quit! I'm already on dDAVP for partial DI, but it makes no difference in the bleeding. I've come across several anecdotal stories on heavy periods and EDS, and this is suspected but unconfirmed. I have my docs stumped as I feel like I'm slowly bleeding to death.

Is heavy or prolonged bleeding during your periods normal for EDS? I've had my period for 40+ days now. No fibroids, no PCOS, no cancer, no explanations. How do you stop this?

Liz,

Which doc seemed more knowledgeable and competent with POTS in general. I'd opt for the Birmingham group, since they've seen a LOT more POTS patients. I do agree that the thyroid thing needs to be looked at though. I wish it weren't this way, but we have to trust our gut instinct with doctors. They will try to help in as many ways as they can, but end up screwing us up in the process due to all the unknowns. I'm still holding out hope that there is one decent doc in Georgia that has the interest to treat POTS patients, but I'm not holding my breath.

Hang in there.

Jennifer

BTW, I have thyroid issues too (enlarged, firm and rubbery...like a toy duck...stuck on my neck! )

From medscape reference:

"The key to the pathophysiology, signs, symptoms, and treatment of SIADH is to understand that the hyponatremia is a result of excess water and not a serum sodium deficiency. SIADH consists of hyponatremia, inappropriately elevated urine osmolality (>200 mOsm/kg), excessive urine sodium (UNa >30 mEq/L), and decreased serum osmolality. These findings occur in the absence of diuretic therapy; in the presence of euvolemia without edema; in the setting of otherwise normal cardiac, renal, adrenal, hepatic, and thyroid function; and in absence of factors known to stimulate ADH secretion such as severe pain, hypotension, and stress.

In SIADH, the inappropriately elevated level of vasopressin enhances the reabsorption of water, thus concentrating the urine. It is the excess free water absorption that causes hyponatremia."

In English, this says that your body produces too much ADH/vasopressin and therefore, holds on to too much water only, not salt. Your urine would be concentrated and your blood would be thinner than normal with low sodium concentration. Many of us have the exact opposite issue, which is more like (or actually is) diabetes insipidus. If you are volume depleted, I doubt that you would have SIADH. Urination is the key to diagnosing this, if you urinate a lot and it is not yellow or orange, you won't have SIADH.

I have "accent" lamps around my house with 25 watt or less bulbs in them, they go on at dusk. It is just enough light to see my way around, but not enough to read. My sleep doc told me to use as little artificial light as possible after dusk. If I can get the pink, "mood" light bulbs, I get those too.

It was actually a psychiatrist that got my diagnostic ball rolling. My primary doc told me that he would not do any further testing without a full psych evaluation (he's not my primary doc anymore.) At the psych appointment, the doc looked at my chart and told me that "you can't make your body do this!" and then made me an appointment with his neurologist. I wouldn't worry either. Just have all your labs with you and be totally open about any anxiety issues they might bring up. My body had anxiety symptoms, but my emotions sure didn't. POTS is more recognized now, but keep us posted how things turn out!

Good luck!

I'm glad PE saved her life, it nearly ended mine!

http://www.desmoines...heart-condition