firewatcher

"Ok, who do I have to write to to ask them to STOP calling it Grinch Syndrome..."

Actually, this is the only beef I have with his work. The flippant use of "Grinch" belittles the suffering that all of us go through and makes it sound like POTS is as serious as a hangnail. Not that POTS is the greatest acronym, but it doesn't make fun of us.

Dr. Levine's work has helped quite a few people and he is now admitting that it has to maintained daily to preserve improvement: "However, to maintain the benefits these patients will need to incorporate the training program into their everyday lives indefinitely."

Another link to a slightly larger article

Get ready folks, the whole exercise shebang is coming around again:

Propranolol vs. Exercise in POTS

Yes, it is another Levine study, so it will illicit strong feelings depending on your opinion of him and his work.

Another link to same info

"I guess I will stay pretty close to home the first few days."

Nah, I was on a field trip with my youngest when my first dose wore off. You just need ready access to a bathroom...fast!

"I was prescribed .2mg to take at night only. I am guessing since I am only taking it at night I should be able to drink and exercise normally during the day. Do you know when the max. fluid retention time with this drug?"

Since you probably won't be drinking at night, it should be OK. Every person is different with drug metabolism, so it may clear faster or slower in your system. It takes me 7 hours to clear .1mg. You will know (very clearly!) when it has worn off because you'll get thirsty and then pee buckets if you've drunk a lot. If you've limited your intake, it won't be too bad, but sometimes it can be urgent and copious! I can usually tell it is coming because I'll get thirsty before my bladder fills enough to need to find a bathroom.

Be aware, though, you can make a LOT of urine in a short amount of time! And if you take it too early at night you can wet the bed in your sleep when it wears off if you are sleeping deeply.

I take .1mg 2x day. My "dump" is between 3 and 10pm and can be a pain, depending on how much I've drunk. I'm severely plasma deficient, so it was a huge help for me. I had my sodium levels checked several times in the first two weeks, but only had problems when I was on a constant dose, with no "dump." As long as you allow a time to shed the excess water, it is no big deal.

One strange issue to be aware of is exercise induced hyponatremia. I found out much later that I was inducing this by exercising while on dDAVP in the middle of its action. I was exercising at my maximum fluid retention time and technically hyponatremic due to the dDAVP, so I was having bad post exercise effects. I had to double my sodium intake to even this out.

DDAVP is not a "mild" drug, actually it is a biological sledge hammer. It is a vasopressin analog, or a synthetic version of a naturally occurring pituitary hormone. It acts by causing the kidney to retain water, but not sodium. The most dangerous side effect to watch for is hyponatremia (low serum sodium.) This is not a problem unless you drink too much water or you don't allow a "dump" to shed the excess water. It works for POTS by causing volume expansion and raising low BP. I do know of several kids that take it for bedwetting, but they don't drink anything after they take it at bedtime and during the day, they urinate normally.

I only had issues with it when I first started it and continued to drink like a POTSy. You can't just drink when you want, you need to limit yourself to drinking only when thirsty. Other than that it has been a "wonder-drug" for me. While I am on it, my HR and BP are absolutely normal regardless of my position.

Take it once and see how you feel, it is generally out of my system by 7 hours, just don't guzzle anything other than gatorade.

My pupils are always very large. Many people have commented on it, even as far as to ask what drugs I'm on! My pupils do react to light, but not as much as everyone else and it makes bright conditions painful.

Tinks,

A Creatinine Clearance test is an old test that measures 24 hour urine creatinine against serum creatinine. It weeds out any artifactual reporting of kidney damage. If both numbers indicate that your kidneys are not clearing creatinine, then the dx is confirmed. I have an actual reduction of GFR confirmed by both tests. HOWEVER, there are many things that will appear to raise serum creatinine, from dehydration to exercise to vitamin C.

I was told that my kidney function could not improve, but honestly, in the last six months it has...according to the serum creatinine tests. I have another test at the end of this month, so we'll see if it holds.

If you truly DO have kidney damage, don't let them tell you that there is nothing they can do. I've severely limited my protein intake, along with other things and my GFR has improved.

Just out of curiosity, are you basing all this on eGFR? What has your serum Creatinine been? Do you have protein in your urine and have you had a Creatinine Clearance test done?

My SCr has been as high as 1.34, and my CrCl test confirmed reduced kidney filtration rate. I've never had protein in my urine, but with a SCr that high, I didn't need it for the dx.

I was told that kidney function could not improve once it was lost, but mine has yo-yo-ed quite a bit. I also belong to a kidney forum and there are people on there whom also show variability, what counts is the trend over time. I am currently steady or improving (we'll see with the next labs,) so I am considered stable at stage 3.

I have stage 3 CKD (egfr of 50) according to my serum Creatinine levels. They have been elevated for the last six years. Total body fluid/plasma levels will effect this test in particular. If you are low in fluid, either hypovolemia or dehydration, your serum creatinine will come back high and your eGFR will come back low. I have seen two nephrologists and neither will look for a cause, they have told me that the best that I can hope for is to maintain the function that I currently have. My doc at Vanderbilt has said that there is no correlation between POTS and kidney damage, but there are studies that implicate the kidney in the dysfunctional mechanisms of POTS. My current cardiologist calls it "end organ damage," due to a lifetime of blood pressure fluctuations.

Unfortunately, this is part of that uncharted territory we all get to eventually. I see my nephrologist next month and have some questions to ask her. I think that there is a connection.

Lyn,

I have an Apollo Go-light. I was on Rozerem at the time and sleep restriction: limiting my time in bed to 6 1/2 hours and using the light box at full strength upon waking at 6:30 am. What we did not know at the time is that my natural nadir was at 7:30-8:00am, so by using the light box immediately BEFORE nadir, it was emphasizing my circadian delay instead of backing it up. I thought that this was something that had to be pushed through and continued until I was severely sleep deprived and physically and mentally unstable. What few sleep doctors understand is that something as simple as that high intensity blue light is acting directly on the hypothalamus, the master gland and junction of the nervous system and the endocrine system. By pushing too hard, I messed myself up and am still suffering for it four years later. I am one of the few DSPS patients with a set nadir, it won't budge any further than it has already and one weekend of sleeping in will undo any advances that were made. This is genetic for my family, my son has it too.

I have improved my sleep, but mornings still hurt badly. I use a beta blocker immediately upon waking, and my sleep doc says that it abolishes any natural melatonin in my system. At night, I use 1.5mg melatonin an hour before bed with .125mg Klonopin. I do not wear sunglasses before noon and try to get full, natural sun exposure in the morning. After noon, I wear very dark sunglasses with "blue-blockers" and use very little artificial light past dusk. Summer just kills me; the earlier sunrise hits too early and reinforces the delay, so I am more of an insomniac now. Poor sleep really ramps up my sympathetic NS and makes it hard to relax. By the end of summer, I'm usually an exhausted mess.

I have DSPS too. I tried the lightbox therapy four years ago and really screwed myself up. My doc timed my true circadian rhythm incorrectly and had me use it too early, reinforcing my phase delay. It works both ways! The resulting circadian mess caused my POTS to go out of control, resulting in a crash that took years to pull out of. To his credit, my doc stuck with me and eventually we found out that I am only "shiftable" to a point and beyond that point it won't move any further.

I am glad that it helped you, I wish it had helped me.

Just a caution: don't over-expose yourself, or you could end up with panic attacks. Once you have moved your rhythm back, use a maintenance dose and don't over-sleep.

I am thrilled that you found someone! I wish we had even half that here in Georgia!

This is just my take on how this stuff works:

* 150min aerobic exercise/week---reduces any deconditioning and increases blood volume

* Lot's of fluids---again, increases blood volume

* No caffeine---cuts out any sympathetic stimulation and diuretic action of caffeine

* Beta blocker (Atenolol for me)---reduces sympathetic overstimulation and brings HR into a comfortable range

* Clonazepam---again, reduces sympathetic overstimulation and exerts some not yet understood action on the central nervous system

* Lexapro---good for the general malaise and stinky mood that all this ______ generates, as well as helps with neurotransmitters (?)

I really hope that this helps you. I know how hard you've looked to find someone locally. Keep us posted.

Sarah,

In a normal pituitary MRI, the posterior pituitary will be hyperintense, aka: a "bright spot" due to the presence of ADH. In central DI, that bright spot is absent. Mine is absent, there is no difference between the anterior and posterior pituitary on imaging, with or without contrast. This is why my dx is "iffy." With partial DI, people can concentrate their urine under extreme conditions, but only for a limited time...this is why I think my formal water deprivation test was inconclusive; normal people don't have a serum Osm of 304 after overnight fasting or a BP of 80/nothing (it was 50/"I can't hear anything" while supine.)

pituitary disorders

If you scroll down to the bottom of this page, there is an MRI image of a normal pituitary bright spot.

"What was it that finally got you your H POTS Diagnosis if you dont mind me asking?"

My ANS tests at Vanderbilt were very suggestive of hyperadrenergic POTS. Basically, my HR and BP both went way up on testing instead of "normal" responses. My presentation was also fairly life-long without a viral or postpartum "trigger." I have the tremor and cold, sweaty hands and feet with no palpable, wrist pulse when upright.

As for the DI dx, I don't have the posterior pituitary "bright spot" on MRI and have no detectible ADH on testing (even at a serum Osm of 304.) Like I mentioned before, I do concentrate my urine under extreme dehydration: serum Osm of 304, with a standing BP of 80/nothing.***this is the part to be aware of!*** A BP that low should have voided my test results because a BP drop is a potent release trigger for whatever ADH your body can produce. They never took my BP before my water deprivation test, and it should have been done before my serum Osm got above 295. When I walked into the lab, I was already at 304 and had only done overnight fasting...that really isn't normal.

Were your urine/serum osmolality tests done after fasting? Mine look like that almost every afternoon, but I do concentrate my urine under extreme conditions. I have a questionable diagnosis of partial diabetes insipidus, some others of us do as well. If you do a water deprivation test, do it under strict protocol and get a serum copeptin level drawn as well. There is a new study that should release its findings soon that shows that serum copeptin is a better marker of true DI than serum ADH levels.

Is it a burning pain or a super sensitivity? I have cutaneous allodynia:

"Cutaneous allodynia: Pain resulting from an innocuous stimulus to normal skin or scalp. The stimulus that triggers allodynia is not normally painful. The pain can be provoked by combing or brushing the hair, shaving, showering, wearing glasses or earrings. The pressure of a single strand of hair reportedly can feel like a jab with a white-hot knife. Cutaneous allodynia is believed due to a transient increase in the responsiveness of central pain neurons that process information arising from the skin. It is commonly associated with migraine. From allo- meaning other + -dynia meaning pain."

I only get it when I am having a migraine, but then even the softest clothes feel like sandpaper. Mine is only one sided.

My lowest was 50/"I can't hear anything..." as taken by the nurse at Vanderbilt. That was supine and dehydrated. Normal supine BP for me is 95/55.

Congratulations to you both! It took tremendous effort from you (hubby too) and your son for this to happen.

May this be a beginning to a healthier time in both your lives!

1. I see a Chinese Medicine practitioner: herbal formulas and acupuncture. I have had poor experiences with supplements other than salt tablets.

Perhaps all the salt is doing more than just expanding our blood volume.

Sodium and stress

"Compared with a control group, the rats that received the sodium chloride secreted fewer stress hormones and also displayed a reduced cardiovascular response to stress...The elevated sodium level, known as hypernatremia, limited stress responses by suppressing the release of the pro-stress hormone angiotensin II. Conversely, it increased the activity of oxytocin, an anti-stress hormone."

"I dont agree. Its not necessarily complex - its just poorly understood."

I think that it is complex. There are several underlying causes for POTS and understanding of those are frequently poorly understood.

"You are certainly gambling when taking chinese herbal mixtures. Some contain fairly or seemingly benign contents that have fairly extensively been studied - such as panax ginseng, dang shen, licorice, etc., but when you go the speculative edges and accept herbal mixtures that contain questionable or potentially dangerous content then you have to realise that your taking a risk. A risk that I dont see as that far removed from the risk of informed self-experimentation."

Yes, I am gambling. I saw my practitioner for several months before I took any of the herbal medicines, and then I had my pharmacist research each herb for interactions and overdose symptoms. I started slowly, but had good results that were backed up by tests from my regular doctors. Honestly, with POTS any pharmaceutical intervention is really informed self-medication; what works for one will tank another.

"Chinese medical practitioners arent really qualified in a western sense."

Perhaps I have become cynical, but this makes little difference to me. I know some incredibly smart non-doctors and some really stupid doctors. I am also aware that I have found one of the perhaps few, incredibly smart, well trained practitioners. Chinese medicine has a far longer track record than Western medicine and so far, nothing I've been given has had negative consequences like the Western drugs I've been given. I also am fully aware that some of the ingredients in my herbal formulas can be deadly if taken incorrectly or prepared poorly. All that being said, I've seen too many scientific research articles at this point that are backing up the traditional Chinese medicine theories.

IBS and SIBO link to food poisoning.

Sugar and antibiotics